Print Page | Close Window

Taxol Rarely Triggers Fatal Reactions

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: TNBC Talk
Forum Description: A place to chat
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=4050
Printed Date: Mar 26 2026 at 7:33pm
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com


Topic: Taxol Rarely Triggers Fatal Reactions
Posted By: trip2
Subject: Taxol Rarely Triggers Fatal Reactions
Date Posted: Jun 28 2009 at 10:27am
http://cancerfocus.org/forum/showthread.php?t=2871 - http://cancerfocus.org/forum/showthread.php?t=2871
 
 
 
There is some interesting information in this link I found regarding Taxol.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+



Replies:
Posted By: Nancy
Date Posted: Jun 28 2009 at 11:19am
Pam,
 
This is very interesting as our new member just sent me this link in an email today. His name is on this article, Gregory Pawelski. Pretty scary right? Not something that the doctors or the drug companies share with us....ever!!!
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: mainsailset
Date Posted: Jun 28 2009 at 11:45am
Well damn, now that Taxol is 'off patent' more of this will come out. And isn't this just the perfect drug, shrinks the tumor while simultaneously releasing more cells into the system. What more could Big Pharma ask of a money maker drug. I would just love the opportunity to be a blood donor to one of these CEO's

-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: SagePatientAdvocates
Date Posted: Jun 28 2009 at 11:50am
Pam, thank you for posting this...I think it is essential that women take every precaution possible about this drug and if you feel very strange as the infusion starts ask them to stop it immediately..

I posted this, here, several months ago in the Welcome New Members forum-


Topic: warning about TAXOL
    Posted: 25 Apr 2009 at 7:27pm
In September 2004 my daughter embarked on a four months chemo program..2 months of AC and then 2 months of TAXOL...

Sue's sister's recent post about her sister's experience with an adverse chemo reaction(ixempra/antifungal) spurred me to write this post.

I attended all but one of my daughter's infusions and got to know the oncology nurse quite well...G-d bless her for all her kindnesses to my daughter..about a week before the transition from AC to TAXOL I asked her for the booklet that comes with PACLITAXEL(TAXOL)..you now those little booklets that you need a magnifying glass to read (I wonder if all the drug money that goes to politicians has anything to do with that?)

I asked for the booklet because at the end of the previous session my daughter went to the bathroom and I spoke to a patient in the waiting room..she told me about her experience with TAXOL.."when they started the infusion I felt like all my bones were crumbling..I have never experienced something like that in my life..My husband told me he had never heard me scream like that not even in a difficult childbirth I had..be careful with it"..so I asked for the book..

http://www.bedfordlabs.com/products/ViewProductDetails?brand=Taxol - http://www.bedfordlabs.com/products/ViewProductDetails?brand=Taxol

and then click on package insert

my daughter and I had a meeting with the oncologist before the TAXOL.
I told him I read the following-

WARNINGS
Anaphylaxis and severe hypersensitivity reactions characterized by dyspnea and hypotension requiring treatment,
angioedema, and generalized urticaria have occurred in 2% to 4% of patients receiving paclitaxel in clinical trials. Fatal
reactions have occurred in patients despite premedication. All patients should be pretreated with corticosteroids, diphen-
hydramine, and H2antagonists. (See DOSAGE AND ADMINISTRATION.) Patients who experience severe hypersensitivi-
ty reactions to paclitaxel should not be rechallenged with the drug.

..................

To be honest I do not remember if my daughter was "pretreated". I think I was so concerned with the "fatal reactions" part that I concentrated on that. I gave the book to the oncologist and expressed my concerns and his response was "I have been doing this since this drug came out and I have never seen this problem"..."well, do you have a 'crash cart' in the infusion room?". "No, I can always call a cardiologist friend who is a couple blocks away"...at that moment, unbelievably, the oncology nurse barges into the room without knocking and tells the doctor, motioning to the hallway, "I need to talk to you, NOW"...the door is left open a crack and my daughter and I hear "the guy in rm 4 is crashing..we just gave him TAXOL"...

In any event there was a crash cart in the office when she got the TAXOL and my son-in-law came to be with her for the first couple of minutes and Thank G-d she did not have a reaction but I was petrified. I know it says 2-4% but sometimes stuff happens so for those of you about to take this drug please make sure that everything is done, as much as possible, to prepare for an emergency..We were told if there is a severe reaction to the drug you should stop the infusion immediately...also I have read that sometimes you don't know you are having an adverse cardiac reaction and sometimes it is recommended that your heart is monitored for a certain time as you are receiving the drug.

I am not recommending that this drug not be taken...just be aware there can be awful side effects...probably can be with other chemos as well..My daughter hated this drug..she had constant bone pain and severe aches and still suffers at times even four + years later. But she is almost 5 years NED so hopefully it did its thing..

all the best,

Steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: trip2
Date Posted: Jun 28 2009 at 12:01pm
Steve I remember your post.
 
I too had extreme leg bone pain w/Taxol that I still remember from 6 yrs ago.  I just laid in a heap on my bed in tears, I could not move for the pain and wanted to stop my treatments half way thru but my husband wouldn't let me.
Took Lortab which did nothing.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: gpawelski
Date Posted: Jun 28 2009 at 4:43pm
As in most things, it comes down to individualization. There are clearly situations where high dose therapy reliably produces cures, while low dose therapy does not. Diseases such as testicular cancer, Hodgkin's disease, childhood leukemia, etc. The problem has been the tendency to apply the lessons of these diseases to all forms of cancer.

I don't think claiming that low dose therapy is to be preferred, anymore than claiming that high dose therapy is to be preferred. If one has a highly effective drug or drug regimen, then this should be given at the optimum dose to achieve whatever it is supposed to achieve.

If what it has the capacity to achieve is to destroy the tumor cells directly, then sufficient drug should be given to achieve this goal. If the drug does not have the capacity to destroy the tumor cell, and the drug works through an effect on angiogenesis, then the drug should be given at a dose consistent with this aim.

For example, some ovarian cancer patients do have tumors which are equisitely sensitive to platinum. These patients should be treated with aggressive platinum dosing, because you have a good shot at getting a very long term survival. But giving high dose platinum to patients with intrinsically resistant disease doubtless causes more hurt than help.
 
There appears to be a number of patients who have had long-term survival after high dose therapy, but there are a number of patients whose tumors are responsive to chemotherapy who have had long-term remissions from low dose therapy, as well as a number who show no difference in survival when treated with low-dose or high-dose therapy.
 
You may want to reserve aggressive therapy for those patients who will derive more benefit than harm, while identifying the most promising treatment regimens for everyone. In patients with tumors very resistant to cytotoxic chemotherapy, the most promising treatments may be angiogenesis inhibitors, growth factor inhibitors, or more integrative medicine approaches.
 
It may be better not to give more aggressive and toxic, mutagenic and immunosuppressive combinations, but to give "targeted" single agents, or give least toxic mutagenic synergistic combinations. Although somthing may be an above-average regimen in some patients, it may not be a highly active regimen in others.
 
More emphasis should be put on matching treatment to the patient, through the use of individualized pre-testing, having more respect for minimal partial response or stable disease, when it can be achieved through use of the least toxic and mutagenic drug regimens, and reserve the use of higher dose therapy or aggressive combination chemotherapy to those patients with tumor biologies most amenable to attack and destroy by these treatments.
 
Trying to mate a notoriously heterogeneous disease into one-size-fits-all treatments is disingenuous to all who are inflicted with it. And the criticism remains: All of the clinical trials resources have gone toward driving a square peg (one-size-fits-all chemotherapy) into a round hole (notoriously heterogeneous disease).
 
Today, they are trying to "sensitize" Taxol response with other (new) and more expensive drugs. Why not utilize some other drug (or combinations) that may work much better than Taxol, instead of trying to sensitize it According to NCI's official cancer information website on "state of the art" chemotherapy for breast cancer, there is no data to support the superiority of any particular regimen.
 
Last year, an FDA advisory panel said no to Avastin for advanced breast cancer. An FDA review concluded that while Avastin appeared to lengthen the amount of time before a cancer became severe, it did not significantly lengthen the lives of patients.
 
A clinical trial was done using Avastin in combination with Taxol. Doctors were faced with a problem of whether to use Taxol and forgo Avastin, or to use some other conventional drug for initial therapy in order to use Avastin. Perhaps the problem is not in adding Avastin to Taxol for breast cancer, but in using Taxol with Avastin?


-------------
Gregory D. Pawelski


Posted By: trip2
Date Posted: Jun 28 2009 at 6:32pm
Hi and welcome.
 
Thank you so much for this information.  Food for thought, much appreciated.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: sibu
Date Posted: Jun 28 2009 at 7:59pm
Mainy,

Can you (or anyone else) please expand on your comment in the post about Taxol coming "off patent" and what the ramifications of that are?

Is more information on a drug's side effects made public when something comes off patent?

Please explain.

Thanks,

Donna


-------------
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07


Posted By: dmwolf
Date Posted: Jun 28 2009 at 8:06pm
Hey, Gregory.  Thanks for such a thoughtful commentary.  Out of curiosity, what is your line of work?  Are you an MD and/or bio researcher of some type?  What brings you to us here at TNBC?
Thx,
Denise


-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


Posted By: SapphireSkies
Date Posted: Jun 29 2009 at 4:03am

Although this information is good to have, I find it very scary. I have one more A/C treatment scheduled, then they are switching me to Taxol. Everything I've read about Taxol seems negative. As if the pain and possible permanent neuropathy associated with it isn't bad enough, now it may cause more cancer and it's not patented anymore? And the drug itself can cause death?? Scary. Now I don't want to take it...but what other choice do I have being triple negative? Someone I know who is also triple neg. will be getting Taxotore -(spelling?) instead of Taxol...does anyone know the difference between the two drugs?

I read an article with Melissa Etheridge that I found interesting. She had like one dose of Taxol, and it affected her so badly that she stopped taking it. She is still cancer-free today, as far as I know. Does that mean anything??
This is just scary.... what to do?


Posted By: gpawelski
Date Posted: Jun 29 2009 at 5:16am
Mainy
 
Dr. David Graham, a Food and Drug Administration (FDA) employee, appeared before a Senate Finance Committee in 2006 and announced that the FDA was incapable of protecting us from unsafe drugs. He said there is an inherent structural problem that exists within the FDA. People who approve the drugs are also the ones who oversee the post marketing regulation of the drug. The people who approve a drug when they see that there is a safety problem with it are very reluctant to do anything about it because it will reflect badly on them. They continue to let the damage occur.
 
The organizational structure within the FDA and the Center for Drug Evaluation Research (CDER) is geared towards the review and approval of new drugs. When a serious safety issue arises at post marketing, the immediate reaction is almost always one of denial, rejection and heat. They approved the drugs, so there can't possibly be anything wrong with it. This is an inherent conflict of interest.
 
The basic criterion for approval of a new drug is that its benefits outweigh its associated risks. So benefits must be considered in light of the drug's toxicity and potential safety problems. The FDA weighs the tradeoff between safety and access.
 
Denise
 
I was a spouse/caregiver to a cancer patient. I became intensely interested in cancer by virtue of working through, enduring and surviving my wife's illness. I've gotten a street education by virtue of voluminous reading and hundreds of hours of past and ongoing personal communication with noted authorities in the field.
 
As a cancer patient advocate, I've been interested in and studied the aspects of cell function analysis (harken back to my college days studying biology) for a number of years, like anyone would have an interest in molecular science or biological science. My point with respect to cell function analysis is to educate patients and others that such science and technology exists, and might be very valuable.
 
I get nothing out of my endeavors except the satisfaction of knowing that I've helped to increase the knowledge of informed consent. I get no pay, no lectureships, no junkets, not even any free meals. To paraphrase Martin Luther King, Jr., "a scientific communication should be judged on the quality of its content and only secondarily, or not at all, on the qualifications of its author (I have no prefix to my name).
 
SapphireSkies
 
It's always going to be a case of what works best for you, after you performed extensive research and study. Your life depends on all the information you can muster. This is called informed consent. You must be aware of all possible "problems" as well as the "benefits." In addition, the physician "informing" a patient needs to spend enough time to make sure that the patient understands well enough that the "consent" is truly "informed."


-------------
Gregory D. Pawelski


Posted By: gerriesue
Date Posted: Jun 30 2009 at 7:06am
Hi, Interesting reading! I was given Taxotere and had a severe reaction on my second dose. I was pre-treated with a variety of drugs as is usual. However, ten minutes into the infusion started seeing stars, and having trouble breathing, nausea and severe back/kidney pain.    My chemo nurse was right on top of things and administered the drugs necessary to control the reaction. It was pretty scary and people were moving quickly all around me.   I was then (several weeks later) switched to Abraxane. Evidently, the solvent, cremespore is the thing that most people react to in the Taxol/taxene drug and abraxane does not have that in it. The solvent in abraxane is human albumin. I asked why they didn't just give Abraxane to begin with and was told iit is very expensive and usually used primarily for metastatic disease. I went on to have three rounds of that with no reaction, except for the neuropathy that over 70% of people get with this type of drug.

-------------
57 yrs. old at DX Oct. 2008 Stage 1, Grade 3, TNB, 1.7 cm tumor,Negative nodes TX partial masectomy, 4 rounds A/C, 4 rounds Abraxane


Posted By: alene
Date Posted: Jun 30 2009 at 8:29am
Taxotere...
what a nightmare...
 
The burning the burning the burning...
My face and upper chest/neck were on fire....It was like a chemical burn from the inside out...I couldn't be in any light...not outside...even lamps inside the house...made the burn worse...So I lived in darkness and wore veils when I had to ride in the car to an appointment.
 
My skin hardened...blistered  (huge blisters) and crusted over...I had to use silvadene all over my face and neck...used mountains of different cremes to try and soothe the burn.Mixed up concoctions of silvadene, skin cremes and baby sunscreen (so it wouldn't burn my eyes)...Looked like monster...
 
Got thrush 3 times...Sores up my nose...down my throat
 
Then there was of course the neuropathy....nose, around my mouth, feet and hands.
 
I was on dose dense...so every week I was worse..The nurses got so worried they complained to the doctor that my reactions were too severe...They made me take a break...then we tried again...same thing...
 
When I started having troubles breathing...My throat was swelling..the onc just stopped  the drug.  I cried and beg them to let me continue.  But they said they were worried it was going to kill me.
 
They told me...initially that taxotere had a 16% of curing me...that it was my best chance...so that's why I wanted to try to stick with it.
 
So they moved me to Red Devil...for more fun...
 
So I don't know about taxol..but my personal experience with taxotere was pretty awful...
 
 
 
 
 


-------------
DX 5/21/2008 TN 8cm TAC
Mast 12/08
Extensive Residual Lymphatic Invasion
Inop node clavicle
68 Rads
Stage IIIc
Recur 11/09 Her2+
Surgery 68 RADS
4/10 Biopsy Skin Mets TN
28 RADS
Stage IV


Posted By: minniemouse
Date Posted: Jun 30 2009 at 8:33am
gerriesue,
I have case history similar to yours. Developed breathing difficulties after second cytoxan/taxotere dose (though not as serious as yours or as quickly). My onc switched me to cytoxan/adriamycin for final two doses. (He was skeptical that Abraxane is being pushed by its makers as a miracle drug for many types of cancer at many stages, when most of research so far relates to its effect on metastic disease. ) I'm stage 1, grade 1.
 
I shared his concerns, but here I am about to get my final treatment and I'm a little concerned -- have I gotten all the meds I need to fight this cancer?
I realize there is no magic cure for TN, but I hate the not-knowing.
 
minnie
 


-------------
dx 02/09 @62;lumpectomy 3/24/09; 1.5cm; node neg; stg I/gr I; BRCA 1/2 neg
2 rnds Taxotere/Cytoxan; 2 rnds A/C (after lung react to tax); 33 rads.


Posted By: alene
Date Posted: Jun 30 2009 at 8:41am
Well I'm not a doctor...but my personal research...leads me to believe that you have really good stats...and a good prognosis...even though your TN.
 
You were node negative...This is HUGE...You  caught it early...tumour size small...Good   The tumour grade...is low for recurrance...Grade 1...This is really really good..You're not BRCA positive...Good and double good.
 
Adriamycin...has a life time limit...so getting 2 rounds...I think will allow you to save it...as a tool in case you should need it in the future.
 
It seems to me...that you got aggressive treatment...and with your stats...I just bet...you're going to be a big success story..
 
Lots of love
Alene


-------------
DX 5/21/2008 TN 8cm TAC
Mast 12/08
Extensive Residual Lymphatic Invasion
Inop node clavicle
68 Rads
Stage IIIc
Recur 11/09 Her2+
Surgery 68 RADS
4/10 Biopsy Skin Mets TN
28 RADS
Stage IV


Posted By: minniemouse
Date Posted: Jun 30 2009 at 8:46am
Thanks Arlene!!! I needed those words of encouragement!
 
minnie


-------------
dx 02/09 @62;lumpectomy 3/24/09; 1.5cm; node neg; stg I/gr I; BRCA 1/2 neg
2 rnds Taxotere/Cytoxan; 2 rnds A/C (after lung react to tax); 33 rads.


Posted By: dmwolf
Date Posted: Jun 30 2009 at 9:03am
Just a word to the newbies who might read this and get scared.  Most people do just fine on Taxol/taxotere.  I was in the majority with this, having no problems with allergy (I didn't even need the steroids, which I quickly dropped because they made me depressed).  I also didn't end up with neuropathy or any other lasting damage to any part of my body that I can discern.  It will probably be ok for you too.
-Denise


-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


Posted By: gerriesue
Date Posted: Jun 30 2009 at 9:53am
I'm glad you wrote that Denise, and I know you are right. Most people do not get this reaction. My oncologist said she has given many treatments of Taxol/taxotere and had not seen this type of reaction ( similar to mine) except once before.

-------------
57 yrs. old at DX Oct. 2008 Stage 1, Grade 3, TNB, 1.7 cm tumor,Negative nodes TX partial masectomy, 4 rounds A/C, 4 rounds Abraxane


Posted By: minniemouse
Date Posted: Jun 30 2009 at 12:34pm
Same here. My onc said my reaction to taxotere was an "extremely rare" reaction.
 
minnie


-------------
dx 02/09 @62;lumpectomy 3/24/09; 1.5cm; node neg; stg I/gr I; BRCA 1/2 neg
2 rnds Taxotere/Cytoxan; 2 rnds A/C (after lung react to tax); 33 rads.


Posted By: alene
Date Posted: Jun 30 2009 at 2:41pm
Thank you Denise
 
Listen to Denise all you newbees
 
My reaction to taxotere was rare...
 
The good news is...
 
I lived through it...I'm still here...and able to tell about it... I have no permanent scarring...
 
All that's left are "fond memories of travails gone bye"
 
Alene


-------------
DX 5/21/2008 TN 8cm TAC
Mast 12/08
Extensive Residual Lymphatic Invasion
Inop node clavicle
68 Rads
Stage IIIc
Recur 11/09 Her2+
Surgery 68 RADS
4/10 Biopsy Skin Mets TN
28 RADS
Stage IV


Posted By: MsBliss
Date Posted: Jun 30 2009 at 5:50pm
This article and the follow up below it are shocking.  Dr Valero, one of the doctors who is mentioned in the piece, wanted me to take weekly taxol.  I don't understand why if he knows it is not adding to the bottom line, he would still be prescribing it as a weekly regimin.  What is going on here?  Where are our translational doctors, who are supposed to be specially focused on noticing these connections?


Posted By: SapphireSkies
Date Posted: Jul 01 2009 at 3:03am
Originally posted by dmwolf dmwolf wrote:

Just a word to the newbies who might read this and get scared.  Most people do just fine on Taxol/taxotere.  I was in the majority with this, having no problems with allergy (I didn't even need the steroids, which I quickly dropped because they made me depressed).  I also didn't end up with neuropathy or any other lasting damage to any part of my body that I can discern.  It will probably be ok for you too.
-Denise
 
Thank you for this, Denise. Although I sincerely appreciate the experiences shared here, it is extremely scary as someone who will soon be switched to Taxol to come across this thread.
 
I guess as with any drug, there are going to be some severe reactions with some individuals. But if this drug is helping more than it's hurting, well...I guess I'll take my chances. I'm going to trust my oncologist on this one... after I ask her some more questions. ;)


Posted By: JanetK
Date Posted: Jul 01 2009 at 3:31am
http://www.cancer.gov/dictionary/db_alpha.aspx?expand=p#paclitaxel - paclitaxel (Taxol®), http://www.cancer.gov/dictionary/db_alpha.aspx?expand=d#docetaxel - docetaxel (Taxotere®) are two different drugs. I just wanted to clarify this as some posts are indicating they are one and the same.
I just came off 4 rounds of Taxotere/Avastin. I had just about every side effect down the pike. I did not however get any of the symptoms at infusion.
Hugs
Janet


-------------
TNBC feb 13,2009
2.6x 3.5
neoadjuvant chemo 8 rounds
Lumpectomy successful Oct 09
axillary node dissection Nov 09
still awaiting results


Posted By: dmwolf
Date Posted: Jul 01 2009 at 8:39am
Taxol and taxotere are almost the same thing.  They are both in the Taxane family, and if their effect on breast cancer cell lines is to be trusted, have  the same targets  (cell lines sensitive to one are sensitve to the other; cell lines resistant to one are resistant to the other).  Current thought is that the best thing for triple negatives is weekly Taxol for 12 weeks.  Fractionated (a lower dose every week instead of a bigger dose every two or three weeks) is supposed to be better for fast growing cancers like ours.  Taxotere every three weeks is done also, with trials showing the same efficacy as dose dense (every two weeks) Taxol, but the latest word is that if you have a choice, do weekly fractionated Taxol for 12wks.   This is called 'metronomic' therapy.
love,
d


-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


Posted By: JanetK
Date Posted: Jul 01 2009 at 10:47am
I did taxotere x4, 21 days apart.

-------------
TNBC feb 13,2009
2.6x 3.5
neoadjuvant chemo 8 rounds
Lumpectomy successful Oct 09
axillary node dissection Nov 09
still awaiting results


Posted By: trip2
Date Posted: Jul 01 2009 at 11:25am
I would like to apologize to any member I may have frightened with the Taxol information.  I fully understand going thru it twice how it feels to be facing chemotherapy treatments.
 
One thing we have stressed practically from day one is that we do not all respond the same to chemotherapy.
 
Whatever we read here or somewhere else should always be researched by you and discussed with your doctors.
 
 
 

 
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: mefowler
Date Posted: Jul 01 2009 at 11:49am
Hello all,
 
I came across this study when I was looking at info about carboplatin/Taxotere therapy.  It addresses the issue of cross-resistance in patients with metastatic breast cancer who had been treated previously with Taxol, and were given Taxotere in the study.  The link to the abstract is: http://www.jcojournal.org/cgi/content/abstract/16/10/3362 - http://www.jcojournal.org/cgi/content/abstract/16/10/3362
 
The conclusion was that there was only partial cross-resistance between paclitaxel (Taxol) and docetaxel (Taxotere).  This rather surprised me, as I was expecting that there would be a class resistance, but apparently that is not true.
 
It is an older study, but is still being cited by current articles.
 
Maire


-------------
53 yo, dx'd 11/08 at 51, 2.9 cm IDC, node-neg, neoadj chemotx with Taxotere/carboplatin q3wks x 6, lumpectomy 4/09, path showed pCR, margin reexcision 5/09, rad'n 6-8/09, intermittent Tarceva, dc'd


Posted By: dmwolf
Date Posted: Jul 01 2009 at 11:53am
Wow, I'm really surprised.   We definitely do not see that in the cell lines.  Thanks for the post!
-Denise


-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


Posted By: Amanda
Date Posted: Jul 01 2009 at 12:32pm
I did 12 weekly treatments of Taxol. I had a couple of reactions each time I got the infusions. I would get really hot and I would start to get tingles up the back of my neck into the back of my head. Each time this happened the nurses would stop the Taxol and give me saline for a while. Then they would start the Taxol back up again. Last summer, every Wed, I was at the treatment center for 8 to 10 hours getting Taxol. It was the longest 12 weeks of my life.
 
Thank you everyone for the info on Taxol and Taxotere. I have learned alot.
 
Amanda


Posted By: gpawelski
Date Posted: Jul 01 2009 at 1:39pm
One of the researchers listed in the foot notes of my paper had told me that the study he finally published in the journal Oncology, was rejected by all other American & Europen cancer journals (Journal of Clinical Oncology, Cancer, Annals of Oncology, European Journal of Cancer, International Journal of Cancer) where it had been submitted. The journals were reluctant to publish such a scientific report, simply because taxanes (both taxol and taxotere) were at the time very intensively advertized in these journals.
 
Less than 20 percent of registered clinical trials of cancer drugs are eventually published in medical journals, according to a review published online by the The Oncologist medical journal.
 
A search of the National Institutes of Health's ClinicalTrials.gov web site identified 2,028 registered research studies of cancer treatments. Major medical journals require all studies considered for publication be registered at ClinicalTrials.gov or another publicly accessible database.
 
And a subsequent search of the National Library of Medicine's PubMed database showed that just 17.6 percent of the trials were eventually published in peer-reviewed medical journals.
 
The publication rate was particularly low for industry-sponsored studies, such as those funded by drugmakers (just 5.9% compared to 59% for studies sponsored by collaborative research networks. Of published studies, nearly two-thirds had positive results in that the treatment worked as hoped. The remaining one-third had negative results like the outcome was disappointing or did not merit further consideration of the tested treatment, they report.
 
The finding raises concern about publication bias in cancer treatment trials, according to the researchers, Scott Ramsey and John Scoggins of University of Washington and Fred Hutchinson Cancer Research Center in Seattle.
 
The researchers suspect the rate of negative results is much higher in the studies that have gone unpublished. "It is likely that many unpublished studies contain important information that could influence future research and present practice policy," they wrote.
 
Of course, we know why a registered trial may not be published, some fail and a researcher may decide the result doesn't enhance knowledge or one's reputation. And some sponsors don't want negative results out there. Same goes for some journal editors.
 
But "unpublished trials may have special importance in oncology, due to the toxicity and/or expense of many therapies," they wrote. In other words, the knowledge base is incomplete. And who does that help?


-------------
Gregory D. Pawelski


Posted By: SagePatientAdvocates
Date Posted: Jul 01 2009 at 2:00pm
Dear Pam,

I personally feel you did everyone a service by posting the information. As you know I had posted it previously, as well.

I believe everyone here knows that the ultimate decisions will always be made based on discussions with their medical advisors. I don't believe anyone is relying on anyone's post to make such decisions.

Nevertheless, I feel all of us must be our own advocates to a certain extent and it is healthy to question, as I did, e.g. an oncologist "do you have a crash cart in your office if my daughter has a reaction to the TAXOL." Others here may not want to ask that question..that's fine..but there is no harm, in my opinion, to have the knowledge that RARELY there can be serious side effects..

We live in a world where advice changes and often dramatically..I suffer from kidney stones (my latest CT scan showed 3) and when I have passed them, in the past, I have had excruciating pain. I was told to take a heavy dose of Vicodin. In this morning's press a panel recommended that Vicodin be banned-

"ADELPHI, Md. – Government experts called for sweeping safety restrictions Tuesday on the most widely used painkiller, including reducing the maximum dose of Tylenol and eliminating prescription drugs such as Vicodin and Percocet.

The Food and Drug Administration assembled 37 experts to recommend ways to reduce deadly overdoses with acetaminophen, which is the leading cause of liver failure in the U.S. and sends 56,000 people to the emergency room annually. About 200 die each year."

and guess who came out vociferously about the panel's findings about changing the Tylenol dose?...why surprise, surprise Johnson & Johnson,
manufacturers of Tylenol..

My point is that I have AFIB so I can't take other pain killers so what should I do?...I will speak to my urologist and find out what he thinks and at the end of the day I will rely on his judgment and that is what everyone here should do as well...rely on your physician's judgment..BUT I still feel it is important for folks here to be their own advocates...try to learn, ask good questions, present new studies to their oncologists, don't be afraid to seek a second opinion, ask for genetic counseling/testing re: BRCA, or ask for a second pathology report.

To me, Pam is an absolute blessing to this site...she puts her heart and soul into efforts to help all of us, as does Nancy...and if she posted information about something that rarely happens well I think we are all savvy enough to know that there are side effects with many drugs and if the deaths come too often the drug will be withdrawn but it is valuable to know it's there.

and as I said..I posted in April about the same side effect..and a violent reaction did happen in my daughter's oncologist's office. I believe it is a service to all of us to have the knowledge that if someone feels really weird getting their first TAXOL infusion you need to tell them to STOP.
and also with certain patients..certain preliminary steps need to be done prior to taking the drug..

So, if you want to blame anyone, please blame me because I posted it first..Please, please do not blame Pam. She has one agenda here-to support, nourish, bring knowledge to the women with TNBC and I believe she loves us all. I actually have no idea how she is able to post so much information for all of us.

so in closing (I hear some "it's about time" comments...nice, no respect ) I want to say one thing-

Pam, I have only known you for about two+ months, but I have come to cherish our relationship and yes, I believe, in some mysterious way I have come to love you as the magnificent, generous, compassionate, bright woman you are. Please be kind to yourself and let's all concentrate on the good that Pam has done, is doing and I hope will do for all of us. Let's move on. I think we all get it about TAXOL. It has side effects as every chemo does,
but hopefully it has helped save my daughter's life and hopefully it will do the same for others here. I understand why you apologized. I personally feel it was not necessary for you to do so. There was nothing malicious about what you wrote. Just your effort to help as was mine.

There is no perfect in the TNBC world...including PARP inhibitors(although hopefully they will help)...just a nasty, aggressive cancer that we are trying to deal with and hopefully, in the future, there will be other options that do not rely on the poisons
that the lovely women here are advised to take.

What is perfect in my view is Pam's commitment to TNBCF. Let's cherish that and let's move on. Please.

all the best,

Steve



-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: MsBliss
Date Posted: Jul 01 2009 at 2:13pm
Sometimes we can be startled, but we are stronger than that.  Information, no matter how we might react, is priceless.  Thank you for the information.  I don't want to be lacking in information, no matter how "scarey" it might be, when it comes to my cancer.  Please don't censor yourself. 

"Let all the poisons, that lurk in the mud, hatch out"--Claudius.


Posted By: MsBliss
Date Posted: Jul 01 2009 at 3:29pm
Your postings are very eye opening.  Ten Thousand Thank You's.


Posted By: MsBliss
Date Posted: Jul 01 2009 at 3:52pm
Pam--we need you and Nancy, AND OTHERS, to feel free to post without repercussion.  Inhibiting this forum and the exchange of knowledge would be so detrimental to the mission of this forum. 

I am thankful for your work, and that of Nancy and others.


Posted By: mefowler
Date Posted: Jul 01 2009 at 4:24pm
Dear Pam,
 
I believe that knowledge is power.  I would rather know the truth, even though it may be painful, than be an ostrich and hide my head in the sand.  There is no perfect chemotherapy.  People have anaphylactic reactions to penicillin and peanuts every day, but we don't ban these products because for other people they may be lifesaving or nutritious,   respectively.  Making choices is individual, and we all must weigh the risks and benefits of various treatments to decide whether we are comfortable with our physician's recommendations.  We may all make very different decisions, but that doesn't mean one person is right and another is wrong.  And there may be an element of luck.  If my cardiac function had been better, I may have been treated with adriamycin, and who knows whether that would have been successful in giving me the complete response I got with carboplatin and Taxotere?
 
I appreciate that you put the information out there. We need information in order to make good decisions, and if we are unaware of the possible side effects, how can we look out for dangerous reactions?  Please keep posting, I think everyone on this forum realizes that without your informative posts, we would be much less informed.  Thank you for all the time and effort you give to help the rest of us.
 
Maire


-------------
53 yo, dx'd 11/08 at 51, 2.9 cm IDC, node-neg, neoadj chemotx with Taxotere/carboplatin q3wks x 6, lumpectomy 4/09, path showed pCR, margin reexcision 5/09, rad'n 6-8/09, intermittent Tarceva, dc'd


Posted By: gpawelski
Date Posted: Jul 01 2009 at 5:22pm
The ability of readers to leave comments in an interactive format is probably the most important part of most blogs and discussion boards. The interactive format allows rapid responses to medical and health care issues which frequently intertwine moral, ethical and legal concerns, and provides valuable feedback and commentary not available through traditional media.
 
Blogs and discussion boards are increasing the visibility of laypeople medical experts, who share tips about treatment and care giving from personal experience, and others have relied on them for straight talk about their health issues and bloggers often provide links to other blogs they favor.
 


-------------
Gregory D. Pawelski


Posted By: Shelly Rae
Date Posted: Jul 01 2009 at 6:09pm
Pam, Thank you for your post. I am trying to figure out why my Onc. thinks the weekly taxol is only for when the cancer has spread to other parts of the body. He wants to do 4 every two weeks. It seems to me a lot of people here get it for 12 weeks weekly with only node involvement. I am seeking a Dr. at Mayo clinic here in MN for a 2nd opinion. Thanks to Steve's help. The bad part is I can't just do a copay, I have to do the out of network stuff. But it will be worth it for peace of mind.


Posted By: alene
Date Posted: Jul 01 2009 at 7:12pm
Well I have to say that I feel really bad that my post might scare others.
 
But on the other hand...
 
It really bothers me...that we're just marched around from this appt to that test to that treatment...and nobody really tells us what to expect...nobody asks what we want to do....
 
It's not my intention to frighten..but rather to document....
 
I don't know about you...but I'm tired of hearing things like..oh..this is really rare...
 
I'm suffering from 2 frozen shoulders and I have great difficulty walking...and everyone scratches their head...like they've never heard of it...and then I come on the boards..and there are hundreds of post about arthritis like pain after chemo...One of the 7 causes of frozen shoulder is mastectomy...so give me strength please.....
 
In this very post...3 of us had similar stories...yet all 3 of us had been assured that it is very rare...Reallly?
 
Our posts as painful as they may be...may actually help another sister who is going through these supposedly "rare" side effects...know that she is not alone...and that the truth is...doctors get most of their info from companies that have no incentives to dwell on any negative that might impact their sales....so they really may not know...or may be in denial...
 
and
 
truth be told...If weighing...a treatment that might save my life...and living through side effect hell...well...I'd choose life...and drink arsenic tea that makes horns grow out of my head...if I thought it would stop this cancer.
 
Okay...I will dismount from my "high horse"...
 
And once again...apologize if anything I said..frightens anyone...There's a fine line between sharing experiences and scaring the hell out people...I'll try to do a beter job of finding that line...Smile
 
 


-------------
DX 5/21/2008 TN 8cm TAC
Mast 12/08
Extensive Residual Lymphatic Invasion
Inop node clavicle
68 Rads
Stage IIIc
Recur 11/09 Her2+
Surgery 68 RADS
4/10 Biopsy Skin Mets TN
28 RADS
Stage IV


Posted By: trip2
Date Posted: Jul 02 2009 at 2:50am
Good morning everyone,
 
First of all thank you so much for the thoughtful supportive comments.Heart
 
As I said a long time ago I feel this forum is similar to the pioneers when it comes to our having the discussions and exchange of information that we do in regard to TNBC.  We are growing unfortunately everyday and as we all know knowledge will make us stronger.
Those now diagnosed have a place to come to be with others who know what it is like to have TNBC and you all make this place great, you all make it work.  Thank you for your input!
 
I would also like to apologize to my dear friend Connie for my misunderstanding the intentions of her post.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Nancy
Date Posted: Jul 02 2009 at 6:55am
And yet another article on this very drug, which by the way is produced in China, as are many of our drugs.
 
Nancy
 
 
http://www.naturalnews.com/026539_cancer_chemotherapy_health.html - http://www.naturalnews.com/026539_cancer_chemotherapy_health.html


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: MsBliss
Date Posted: Jul 02 2009 at 11:35am
It shouldn't surprise anyone that injecting a solvent into your blood stream can be fatal or debilitating despite the use of pre meds.  I don't really understand how this can be tolerated by patients or medical professionals as a long standing protocol.  It would seem that the chemo medication, that being taxol or taxotere, should be quite enough of an assault. 




Posted By: musette green
Date Posted: Jul 02 2009 at 2:30pm
   Alene,
   Shocked     I am Not frightened, just keeping my eyes wide open. The facial expressions are the same however.
Love your messages- keep posting!
Lisa


-------------
DX 10/08. IIB,gr 3, 2.5cm. TNBC, BRAC1&2-, nodes+(left axillary, supraclavicular, ant. mediastinal & IM). Neoadjuv. chemo 4x C/T. Left mast.3/09,completed 40 rads 9/09. Reconstruction pending.


Posted By: gpawelski
Date Posted: Jul 03 2009 at 9:47am
The interesting caveat about Taxol, from "The Story of Taxol" by John Goodman and Vivian Walsh, was that it was found to be virtually insoluble in water. For that matter, the compound wouldn't dissolve very much in any solution researchers tried. ("It had the solubility of a brick," one scientist observed.) No matter how good the stuff was, without a way of getting it into a patient, what good was it?

It was discovered that something Taxol would dissove in the "might" work in a reasonably "safe" intravenous solution in humans. It was an elixir made of castor oil and marketed as Cremophor EL. It was the "only" answer (until synthetic compounds were introduced like Taxotere).
 
Few considered the solution to be the perfect answer. As a cancer-fighter, Taxol had muscle, to be sure, but the drug had some serious drawbacks. For hundreds of cancer patients, the drug simply bounced off their tumors, doing little if any good. Side-effects were a real headache, too.
 
Taxol's castor-oil carrier was suspected as the culprit behind much of the misery, which included nausea, vomiting, joint pain, appetite loss, brittle hair and tingling sensations in hands and feet. People soon began to realize that the much ballyhooed drug was no panacea, but also that it was still the best thing out there.
 
The American Cancer Society mentions that the solution can cause dangerous allergic reactions in many people, so patients "must" first take other drugs like steroids and antihistamines in "hopes" to prevent a bad reaction. The solution can also leach chemicals from regular plastic tubes used to deliver medication, so Taxol must be given through special tubing.
 
When Taxol came off patent, some academic oncology groups had clinical trials to show that Taxotere (Docetaxel), a drug like Taxol, but on patent, and if the Taxol doesn't work, will be crossed over to Taxotere, a drug which is mostly (if not completely) cross resistant with Taxol.
 
Some taxane-induced side effects are so common, and in some instances so severe, that patients and their physicians may delay treatment, reduce the dose or discontinue therapy altogether. While medications designed to prevent or treat nausea, vomiting and decreased white blood cell counts are available, there are no treatments for other serious taxane-induced side effects, particularly nerve damage.


-------------
Gregory D. Pawelski


Posted By: cg---
Date Posted: Jul 03 2009 at 1:21pm
Tavocept is being developed as a chemotherapy supportive care drug to prevent or mitigate the incidence, severity and duration of peripheral nerve damage.

The experimental compound is in phase III clinical trials for breast cancer in Japan and the United States and non-small-cell lung cancer in Japan and Europe.

 


Posted By: trip2
Date Posted: Jul 03 2009 at 3:06pm
Connie,
 
Thank you so much for this information.Heart
 
http://www.medicalnewstoday.com/articles/115415.php - http://www.medicalnewstoday.com/articles/115415.php


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: gpawelski
Date Posted: Jul 03 2009 at 4:21pm
Thanks for the heads up Medical News Today article on Tavocept Pam. I knew Bionumerik was boasting about the new drug about three or four years ago. It was aimed at preventing or reducing common and serious side effects, particularly nerve and kidney damage, associated with taxane (Taxol) and platinum (Carboplatin) drugs.
 
They talked about in their literature about how chemotherapy-induced toxicities are common and serious clinical problems that adversely impact both the quality of life of cancer patients and the ability of patients to continue treatment for their cancer.
 
Very little had been accomplished to prevent or reduce chemotherapy-induced toxicities such as nerve damage (neurotoxicity), kidney damage (nephrotoxicity) and hearing impairment (ototoxicity). But hopefully they now have a good product.


-------------
Gregory D. Pawelski


Posted By: LRM216
Date Posted: Jul 04 2009 at 6:56am
While all this information posted on this site is wonderful to have and to know, what am I supposed to do when I am scheduled to start the second half of my chemo on this coming Thursday, which will be the 4 DD of Taxol every two weeks.  I just finished my AC, and I am actually trembling with fear.  If I were not triple neg, I would run as fast as I could from this second half.  What is one to do?
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: trip2
Date Posted: Jul 04 2009 at 7:48am

Linda,

I feel terribly bad that now you are frightened to have your Taxol. The information that I posted was only to inform as I was never told and thought others would atleast like to know and beware of what could happen but most likely will not.  I had forgotten Steve had given this very same material recently, chemo brain that is me.
 
As was pointed out in this thread, people can react and become ill from everyday things that do not bother most people like peanuts or bee stings, fiddleback spider bites, seafood etc.. 
We are all different and these are rare happenings.
 
I wouldn't even want to attempt to count the people who have been given Taxol in the cancer world and are fine.  From what I have read in the last few years in this forum, other's, studies, articles, most get along fine with Taxol although some can get side effects ranging from mild fatigue to pain which is your body working to heal. 
The range seems to be that some continue to work then others have mild side effects and yet again others have mild or bad pain.  We are all different.
 
Do you have a mild sedative you could take?  When you see your Oncologist next before your treatments discuss your concerns with him so that he can explain it will be ok.
If when you begin a treatment and something isn't right, give a yell and get it stopped.  They are trained for these things IF they were to happen.
 
Please if I can help in any way let me know and I hope you'll continue to discuss what exactly is concerning you the most as I am sort of guessing here and let us know what you decide to do.
 
http://www.chemocare.com/bio/taxol.asp - http://www.chemocare.com/bio/taxol.asp
 
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: LRM216
Date Posted: Jul 04 2009 at 8:15am
Please don't misunderstand my post, as I truly am grateful to have the info that has been posted regarding the Taxol.  I spoke to my onc about this prior to my post and of course she was strong in her defense of Taxol and stated that I would be fine, they are prepared for any allergic reactions, take my steroids as directed, etc. etc.  I guess what I am most afraid of is, of course, a bad allergic reaction, but also the fact that this info is out there and yet, as much as I respect my onc and have not felt "uncertain" about her or anything recommended to me, the fact that they just lightly brush this off really bothers me and makes me feel even more insecure in my treatment.  It's not your, Steve's, or anyone else's info re Taxol, please don't think that, it's just the whole darn situtation.  I know I need this dreaded poison (what recourse do I have), but it still is so dang frightening.  Easy for onc to say - all will be fine - but my fear is still there and what about for the months to come and side effects, will it work or won't it work, what if I can't work - she's not taking it, I am.  I just hate this disease and the interruption it causes to all of our lives FOREVER, and the each and every encompassing fear it puts upon us.  Thanks so much for your response to me.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: trip2
Date Posted: Jul 04 2009 at 8:35am
Linda I really do understand and we all get frightened. What is this chemo going to do to me, what is going to happen.  Hearing you will get chemo is very scary, no one wants to go thru that but it is a highly used choice out there for those of us diagnosed with cancer. 
Some choose to avoid it.
 
It is upsetting to me also that we are not informed even of much simpler things as if we didn't need to know or wouldn't understand, I find that insulting and just adds to the feeling of being uncomfortable about the whole thing.
When I think back on my first set of treatments and how I was never told anything nor did I ask I could kick my self but how does anyone know unless they research.
 
Then when we research we will at times come across something we would have preferred not to read but a woman has to decide, do I want to be informed best that I can or do I stick my head in the sand.  It is tough.
 
Of course it is easy for them to sit back, pat you on the head and say all will be fine and they very well may be on the mark.  We want to trust them.  I think too if we are lucky to get ahold of an Oncologist who will atleast take the time to listen to our concerns, discuss with us their opinion rather than to come in, shoot out orders and snap back out the door!  I had one of those.  Then my next one after the first retired didn't want to hear or look at the studies or concerns I brought in, didn't know what basal meant then the last hurrah was when he told me to get a job.  You can see why I fired him.
 
Now I have a new place I go and I feel very comfortable.  It makes such a difference.
 
We cannot know what is to come.  If we will have lingering side effects, many times they go away within a few months.  Some will always have problems but there are choices, similar to what has been said before, if one chooses the chemo to increase their chance of living and they have an issue that doesn't want to go away because of the chemo they are still alive.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: cg---
Date Posted: Jul 04 2009 at 8:54am
Dear LRM216,
 
I had the dose dense AC/Taxol in May 2007 following my mastectomy.
I have have had anaphylactic reactions to preservatives, antibiotics and things they have not identified yet BUT the Taxol I felt safe with - because I knew I had a premedication of Benadryl (which is an antihistamine) and a steroid.  I felt much better knowing they were giving things in the event of a 'could possibly' have some reaction (2% have some sort of allergic reaction). 
 
The premedication is given before the Taxol and you have to wait until it is in your system and then slowly Taxol is given - so the nurse carefully monitors you.  That is why the Taxol treatments take so much longer than the A/C. They put in protocols to ensure the patient is safe.
 
I will tell you honestly I looked at the chemotherapy as liquid gold coursing through my veins....removing any rogue cancer cells who tried hiding anywhere.  The reason why oncologist was defending Taxol is that Taxol works for 20% of breast cancers - and they consider triple negative as a member of the 20% club along with the HER-2/neu positive!
 
Chemotherapy works the best for triple negative breast cancer over 'the other breast cancer'.
 
We have some positives in our column regarding chemotherapy treatments - and the best part is that you are now in the home stretch....just 4 more treatments to have.
 
 
Always expressed your concerns or observations because we will be there for you every step of the way.
 
Love,
Connie
 
 


Posted By: LRM216
Date Posted: Jul 04 2009 at 9:35am
Thank you, Pam.  You have helped and for that I am most appreciative.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: LRM216
Date Posted: Jul 04 2009 at 9:42am
Thank you so much, Connie.  I have researched - seems as though we have to take a crash course in Breast cancer upon diagnose and get our diploma's really fast!  Even though the AC has horrible cardio toxicity, for some reason, although nervous about it, I didn't develop the fear I seem to have regarding the Taxol.  Not too crazy about the steroids either, but as my onc said - they are totally necessary in helping fight the allergies and se's.  I will be taking 4 Decadron on Wednesday evening, and then 5 more prior to the Taxol on Thursday a.m.  Sure hope this one goes fast and that my bone pains are bearable.  I work full time, am widowed, and am raising my very active 14 year old grand-daughter.  Those are enough side-effects - now I get to deal with the Taxol side-effects as well!
 
Much thanks to all of you for slowing my accelerating heartbeats down!  Time to put the big girl panties on and get on with it.
 
Hugs and thanks to all,
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: trip2
Date Posted: Jul 04 2009 at 9:52am
Linda please stay us updated on how it is going for you.  You very well may not have much of any side effect with the Taxol.
 
My best wishes for a smooth sail.Heart


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: SagePatientAdvocates
Date Posted: Jul 04 2009 at 9:55am
Dear Linda,

I was away from my computer when you posted and I pulled up your message on my Blackberry and I, like Pam, was very upset to see how fearful you were. I don't know how to post from my Blackberry and since I wanted to respond I left my errands and went home to find Pam's thoughtful response and your very gracious, explanatory, recent post.

I totally empathize with your feelings and I am glad you had a full discussion with your oncologist about your concerns. In my view, the most important part in this journey is for a patient to be able to rely on their physician's advice. None of us here are acting as medical advisors. Certainly, I am not a medical professional and will never give anyone here or anywhere else medical advice.

Nevertheless, I have found that, particularly, with the BRCA1 mutation I have and the TNBC that is often a hallmark of that mutation that many doctors are not as familiar with either as they should be. So I came on this
board several months ago to post a study that indicated that women with TNBC should be BRCA tested, even despite a lack of family hx of breast cancer.

My unprofessional feeling is that all of us here should try our best to be our own advocates, as best we can, do research, learn, become more knowledgeable and then ask our medical advisors better questions than we would have been able to before and also it will enable us to better understand what these advisors are telling us.

My goal is to try and pass information along to the marvelous women and
men who populate this site in an effort to make folks more knowledgeable and I am also here to learn myself. Pam and Nancy have done a marvelous job with the Tips, Resources section and I am still wading through some of the important information they have posted for all of us.

Unfortunately, all too often, the information is difficult to assimilate and process because the outcomes, here, often are tragically difficult. But I still feel 'knolwedge is power' and it is essential that we learn as much as we can because the landscape is constantly changing, as witnessed e.g. by recent studies in cisplatin and PARP inhibitors.

Secondarily, but as importantly, it is my desire to try and be supportive to the women going through this horrible journey. A positive attitude, in my view, can be a very important asset in fighting the fight and I try my best to help. Pam, especially, and many others here have taken the support role to a level that is almost superhuman and sometimes I literally cry reading the support one woman going through the agony of a TNBC diagnosis herself, chemo or recovering from surgery gives another. It is such a beautiful effort to see a person, who has a lot on their plate, rise above that grief to help another. I am particularly sensitive to that because my mother, at age 43, developed breast cancer when I was 17 and since I did not see my father for 25 years from age 6-31, it was just the two of us and unfortunately all too many of her friends split. Breast cancer in 1961 did not have the publicity or public awareness/support it does now and I saw how she suffered when some of her 'friends' disappeared. I was so angry that when my mother passed away three years later and one of these "friends" came to the funeral I asked her why she had come and where had she been.

I also saw it happen to my daughter, four years ago, to a much lesser degree but it was also painful when one of her friends called her in the first week of chemo and said "well call me when you are finished and we'll have lunch" knowing full well that my daughter had four months left, because my daughter had just told her that. and the four months went by without a word from her friend. I also understand that many folks do not know how to handle cancer in a friend, unfortunately.

It is in this supportive role that I feel I may have failed the women here by posting what I did originally about TAXOL, especially you, Linda.. Perhaps I did not stress enough, that if TAXOL did cause a large number of deaths it would not be on the market etc. I would post the info again in a heartbeat but I should have taken more care. For that I apologize.

I will close by telling two stories about my daughter and I on her journey because I think it indicates how different we all are and yes there are many similarities but there are also unique experiences. My mother had her surgeries at a major NY cancer center and passed away after a gruesome 30 days in that hospital. I hated every one of those 30 days and I also hated her doctor who refused to explain to me what semi-comatose meant.."ask one of the nurses..can't you see that I am busy",
I hated the place so much and had such bad memories that even though I lived in NY for another 25 years I would try to make sure that if I had a meeting/dinner near the hospital I would literally walk around it by several blocks to avoid seeing it. So 40 years later my daughter had her surgeries and all her post-op meetings at the same hospital. As I walked through the doors holding my daughter's hand as we walked to the surgery floor I thought I would faint. I squeezed my daughter's hand really hard and she said "are you o.k. Daddy?".."yes, baby".."I am so sorry Daddy. I wish it wasn't here.".."it's o.k. sweetheart, you are in the right place."

Then after her bilateral mastectomies came the day when my daughter's drains had to be removed. Linda, everyone is different, and for my daughter the thing that petrified her the most was having the drains removed from her chest. She had a nightmare the night before that all the blood from her body flowed out when the drains were removed..and she shared that with her husband who is a surgeon (not breast). She asked him to please come with her...and he said "it's no big deal..I have a day of surgery I can't miss..your dad will be there..you will be fine." We did go together and I cleverly purchased a pair of blinders so that I would not see her chest. We are sitting together in the exam room and the nurse comes in, who is going to remove the drains, and I start to put the blinders on. The nurse says "what are you doing?"..."well, I want to hold my daughter's hand but I do not want to see her chest." laughing she says
"I have been doing this for 10 years..it will be over in seconds and you will see nothing...no reason for the blinders"..and my daughter turns to me and says "o.k. Daddy. I would rather look in your eyes anyway." and then the nurse says to my daughter "and how are WE today?" as I type that Linda I am thinking about what you wrote about your oncologist like she is having the chemo.. but it ain't funny, huh? Anyhow, I hate that "we" stuff and that should have been the warning because as the nurse removed the first drain my daughter's gown fell open. I saw her chest and quickly averted my eyes and said nothing. My daughter was so relieved that the first one was out and the second one was removed and my head was turned to the wall at that point like the scene from "The Exorcist". I was still holding my daughter's hand and my body was facing her but I had kind of screwed my head around as best I could..

Anyhow, surprisingly, my daughter suggested we have lunch before we drove to her house and we had a lovely lunch together. She was so relieved. On the way home she said "you saw, huh?"...we had vowed to be completely honest with each other from the first day of her cancer dx. so I, without hesitation, said "yes, honey..sorry"..."it's o.k. Daddy I know you helped your mom (my mother had a Halsted Radical Mastectomy..no reconstruction)..I know you have seen it before..it's o.k."

So, Linda , sorry so long-winded but your post really hit a nerve deep, deep in my soul. Please go to your TAXOL infusion with confidence...and please make sure if there is something really weird is going on you ask them to stop...and if a loved one can go with you that might help as well. I pray you have a good experience and I pray that like my daughter (five years next month NED) you will beat the beast.

Stay strong, be positive...we are all with you...and thank you for your lovely post. Your kindness and understanding brought me more relief than words can properly express.

in your corner,

Steve









-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: LRM216
Date Posted: Jul 04 2009 at 11:31am
Steve: 
 
Wow - your post had me actually crying to read about all that you have been through, with Mom and then your precious daughter.  Might I also add, which I am sure your daughter is pretty darn aware of already, that she just might be the luckiest daughter in the world.  What a magnificent dad you truly are.  God has a special place in heaven for you, Steve, for sure, and I wish for a very long, cancer-uneventful life for her.
 
I do not want you to waste one more second on being concerned of what you posted - not a one.  These are the very same abstracts and research papers that I feel should be given to us at our initial vist to our chosen oncologists office, but I am sure will never happen.  I have been nervous and apprehensive about the Taxol from the get-go.  I have researched it many times over right after finding out I would be having it, so many of the negative things about I was already aware of, that being the true root of my concern of Taxol. 
 
When I asked about being BRCA tested, I was told not only by my BS, but also the oncologist that, since I was (just turned) 62 at the time of my diagnose and have no family history of cancer on either side of my family, that I would not be considered a candidate for it.  I called my insurance carrier (BC) and was told that they would not pick it up, and being a widow, working full time and raising my 14 year old grand-daughter, could not afford to just pick it up on my own, so I have had no BRCA test.
 
I joined the amazing site with all you absolutely wonderful, dedicated and intelligent people shortly after my diagnose, upon googling to find anything I could about triple negative breast cancer, and I thank God every day I found it.  It is so wonderful to be able to be among those that  share the same disease (although it appears to wear many different masks) and fears. 
 
I also thank you, Steve, Pam, Connie, Greg (and I know I am forgeting some other names, forgive me (chemo brain?)), for all of your dedicated time, research and true love of assisting all of us newbies that come here shell-shocked and oh so needy.  We could not get through this without you all.
 
I shall embark upon my Taxol journey beginning this Thursday, full of my steroids, anxiously awaiting my benedryl, to continue fighting this beast.  I will keep you all updated.  Again, my thanks is unending.
 
Fondly,
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: trip2
Date Posted: Jul 04 2009 at 12:03pm
Steve you are a blessing to this forum.  You have every reason to be here and your daughter has been diagnosed, you have the mutation, the same goals as we do to see answers for this disease.
 
I hope you did not feel I had thrown you under the bus either.  The Taxol article also appeared in the Artemis Newsletter July 1 so you were the first to get it to us and why I didn't make note of it or have forgotten if I did I have no answer.
It was so important!
So many of the things you share with us are important to the support and knowledge of the women and family members of this forum.  You have such a wonderful gift of explaining, showing what you are talking about when discussing mutations or tnbc.
 
I've seen how you have worked so hard to find information for frightened family members, you are a blessing!
 
I agree with Linda, I also had tears reading your post.  As you said Cancer brings so much fear, pain into our lives and those of our loved ones.  The experiences may be different here and there, thank you so much for sharing a bit more about you.
 
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: trip2
Date Posted: Jul 04 2009 at 12:19pm
Linda,
 
We will all be with you Thursday, will be quite a crowded room don't ya think?Smile
 
I also am 62.  I don't remember if I told you when you joined that I had my brca test done at the age of 60 although I do have extensive family history.  Even with my family history neither time I was diagnosed was I advised to seek genetic counseling.  My first diagnosis was at the age of 56, maybe they looked at me as being "older" for this disease, I cannot say what was in their minds but I do know we have many women here over 50, several over 60 up to 80 yrs old.
 
A month before my second diagnosis my daughter had been diagnosed.  Then the bells really went off with me and my sister.  My sister was the one who initiated the counseling in another state and was able to get the kit sent to my Oncology office.  Bingo, positive brca 1, sadly both of my daughters also tested with my mutation and positive.
 
As Steve has said even w/o a family history of breast cancer some women have proven positive.  So you might give talking with a Certified Genetic Counselor a bit of thought.  Didn't you say you were raising a 14 yr old grandaughter?  If so you see she now has breast cancer in her family.  Something to think about anyway.  Try going and reading about this at http://www.facingourrisk.org - http://www.facingourrisk.org


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: LRM216
Date Posted: Jul 04 2009 at 2:39pm
Pam - Such good informative info - thanks so much.  I am so very sorry not only about your cancer, but to see your daughter have to go through it as well has to totally heartbreaking.  I am going to look into the BRCA testing on my own, outside of the oncologists office and see what info I can pull pertaining to my having it done.  I too have two daughters, one 38 and quite sickly (not cancer), the mom of my grand-daughter.  She lives with her boyfriend (and sometimes with us off and on whenever they fight!), but she has so many ailments and always has all her life, they have just worsened and with age she has developed even more, spends a good deal of time hospitalized as whenever she gets anything relatively "common" it always seems to develop into one weird bacterial infection in her blood after another.  So I have always had temp. custody of Bryanna since she was a little toddler - just in case.  She does have a Dad and he is very loving to her when he does see her.  Note:  that is all I can say about him. He does not support her in any financial way, I do, and the rest of the family helps, but I would hang by my nails from the tallest tree before I ever saw her live with him.  Don't mean to sound cruel, but it is what it is.  My other daughter is 40 and lives up in Sweetwater, MN. with her son and husband.  But they are both approaching the dangerous years and they DO have a lot of cancer on their father's side.  Perhaps I should urge them to investigate the BRCA test as well - even if I can't have it done.  Oh, you are so smart to have enlightened me about all this.  I am going to call each of them first thing tomorrow and urge they get in contact with their gynos now that I have the beast.  Good lord, I am certainly rambling - guess this is what being by yourself on the 4th of July does to one!  Just too hot to enjoy the festivities and am still feeling a bit queasy since my last AC, so decided to skip the family "gala." 
 
Please know that I wish both you and your daughter nothing but the best - hopefully no more bumps in the road.  Watch - with my luck, I will do fine through the Taxol - finish it up and then die of a heart attack from the AC which didn't scare me at all!  Hmmm... perhaps I am worrying about the wrong chemo!
 
Enjoy the rest of the holiday and I will keep you all posted.
 
Linda
 
 


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: trip2
Date Posted: Jul 04 2009 at 2:58pm
Good, I'm glad to hear you will consider a consult anyway.
 
I have BCBS so they helped with all but 10% but I did not have to pay for the genetic counseling, my sister did that part.  We did it in a sort of odd way.
I have heard that sometimes Myriad will help in some way but I do not know the details.  You could ask on the Force forum or if we get lucky Steve will come by.
 
Also my youngest 22 yr old who is going to college was able to get free genetic counseling thru a large hospital in a big city.  So I bet if you made a few calls it is possible you might find a way of getting this done if you so desired.  And you bet your daughters are of concern.
 
Good luck and keep us poste.
 
I too am sitting here recovering from a hectic week and it feels good.  Nothing that I have to do and I love it!Smile


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: SagePatientAdvocates
Date Posted: Jul 04 2009 at 3:04pm
Dear Linda and Pam,

thanks for your kind words....and Linda, again good luck on Thursday.

all the best,

Steve



-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: MsBliss
Date Posted: Jul 04 2009 at 3:47pm
Steve, thank you for sharing the story of your mom and daughter.  It was so honest and heartfelt, I felt as though I was in the room with you and your daughter.  I want to add that you also gave me a giggle with the blinders and The Exorcist imagery.  It was, I am sure, not in the least funny then, but with time, well, we can wink and smile a bit! 


Posted By: LRM216
Date Posted: Jul 04 2009 at 4:52pm
Much thanks, Steve.  Be thinking of you all on Thursday!
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: SagePatientAdvocates
Date Posted: Jul 04 2009 at 5:24pm
Dear Linda,

I am starting a separate thread on free BRCA testing offered by Myriad..

don't want the information getting buried in this one..from the way I read it you may not qualify because of your age at dx.

all the best,

Steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: LRM216
Date Posted: Jul 04 2009 at 5:38pm
I've got BCBS as well, but when I called they told me no.  Will try again and will definitely look into other options just in case I do find an avenue to pursue.  Enjoy the rest of the weekend.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: trip2
Date Posted: Jul 04 2009 at 5:54pm
Well you know I think that is wrong.  We know most women who have tnbc are under 40 so insurance pays?
So what about what I figure could be approximately a third of tnbc over 40 who also may carry the gene?
They did pay for mine at age 60 but too I know there are different BCBS policies and plans.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: LRM216
Date Posted: Jul 04 2009 at 6:24pm
Pam -
 
Going to give it my best shot.  Maybe the girls might have better luck so I will have them try as well.  Thanks.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: SagePatientAdvocates
Date Posted: Nov 30 2009 at 11:10pm
Hi all,

I am bumping this thread up due to Onty's recent experience with TAXOL. Please look at page one of this thread to see my warnings originally posted in April. It is very important that women know that the reaction Onty had is rare but it is imperative in my view that they be aware and that preparations are made buy the oncologist to have a crash cart ready etc. The reaction normally happens very quickly as it did with Onty.

I am not writing this to scare anyone..My daughter's experience was fine but, at times, it is truly scary and again, in my view, imperative that women make sure their oncologists are prepared in the infusion room and that if you feel weird the infusion should be stopped immediately..

Onty, unklez, I will respond on the other thread as well..but wanted to 'bump' this up..

all the best,

Steve

 


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: unklez
Date Posted: Dec 01 2009 at 11:00am
Dear Steve,
Thanks. I read somewhere that up to 10% patients react to Taxol. If re=challenged with Taxol with or without added steroids/antihistamines etc, a quarter of these then can expect to have a more severe second reaction sometimes fatal.





-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: mainsailset
Date Posted: Dec 01 2009 at 11:57am

This is interesting discussing the reactions to Taxol

http://www.patentstorm.us/patents/6153756/description.html - http://www.patentstorm.us/patents/6153756/description.html
 
I had been looking to see if Taxol, which is manufactured in China, was seeing any problems with the various fillers added.
All this reminds me that in the rush to find more competitive prices for medicines the end result of resourcing our medicines from China needs to be investigated and better regulated.


-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: MsBliss
Date Posted: Dec 01 2009 at 3:42pm
I will never understand how a solvent made of castor oil became the standard accepted carrier for chemotherapy taxanes, except of course, in the case of Abraxane.  Abraxane would probably become the standard but they refuse to make it affordable.  Abraxane even has the ability to weep into the molecular joints of neoplasms, thus more coverage.  Yet it is not available broadly because it is simply overpriced and so my sisters are being infused with taxol and taxotere with a chemical solvent.  This causes me so much upset.


Posted By: unklez
Date Posted: Dec 01 2009 at 3:53pm
Dear Ms. Bliss,

Until Abraxane came about the only solvent that could be dissolve paclitaxel and docetaxel was cremaphor. Abraxis discovered and patented nab paclitaxel after some controversy but they did. So we are stuck with the situation for now.




-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: gpawelski
Date Posted: Dec 01 2009 at 4:21pm
Taxotere (docetaxel), which doesn't need to be dissolved in the castor oil solution that Taxol, might work 1% better in each clinical trial so that the highly remunerative Taxotere can be viewed as the new "standard" therapy. Who does this serve? The patients? Or the clinical investigators and the clinical oncologists?
 
Abraxane is just a new form of Taxol. Abraxane also does not need to be dissolved in the castor oil solution that Taxol does, and does not require special equipment to be given to patients. The delivery mechanism is different, however, they are basically the same drug.
 
Abraxane mixes the same active ingredient as Taxol in protein particles to make it more tolerable. Abraxane combines the drug paclitaxel with Albumin, a protein found in human blood, where Taxol combines paclitaxel with Cremophor, a combination of castor oil and alcohol.
 
Patients taking Abraxane do not need to take a steroid or antihistamine, and can be given at higher doses than Taxol. However, more of the women on Abraxane had numbness and tingling in their hands and feet. And more suffered nausea and vomiting, diarrhea, muscle and joint pain and anemia.

Dr. Ramaswamy Govindan, a Washington University professor who was co-author of a December 2006 article in the Annals of Oncology about Abraxane and other, as-yet-unapproved Cremophor-free versions of Taxol, said that none of the new drugs had shown significant advantages over the older medicine. In general, the novel formulations so far have not stood out as distinctly superior.


-------------
Gregory D. Pawelski


Posted By: unklez
Date Posted: Dec 01 2009 at 4:40pm
Dear Greg,

I respectfully disagree with the last statement in your post that novel formulations are not superior.

Abraxane is a novel formulation. It can be used in patients who are allergic to cremaphor and thus cannot be given Taxol. Is it not superior thus?

By the way Taxotere is dissolved in polysorbate and ethanol. Certain patients develop hyper sensitivity to polysorbate also.




-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: gpawelski
Date Posted: Dec 01 2009 at 8:40pm
unklez
 
You can take that up with Drs. Seidman and Govindan about novel formulations not being superior.
 
Dr. Andrew D. Seidman, a breast cancer specialist at MSK, has said the two drugs are similar. "Is this a breakthrough in terms of the notion that this is a new class of drug with a new mechanism of action? No."
 
And Dr. Govindan reiterated that none of the Cremophor-free versions had shown significant advantages over the older medicine. In general, the novel formulations have not stood out as distinctly superior.
 
According to studies by Bionumerik, developer of Tavocept, a new drug aimed at preventing or reducing common and serious side effects associated with taxane and platinum drugs, more of the women on Abraxane had numbness and tingling in their hands and feet, and more suffered nausea and vomiting, diarrhea, muscle and joint pain and anemia.
 
Is this superior?


-------------
Gregory D. Pawelski


Posted By: unklez
Date Posted: Dec 01 2009 at 9:15pm
Dear Greg,

All these doctors are saying is that Taxol should remain the drug of first choice over Abraxane because Taxol has been around for several more years, has been studied in more trials and in actual use - by itself and in combination with other drugs, is cheaper, etc.

The 3-8% cancer patients who develop reactions to Taxol and whose lives are saved by Abraxane would say that it is a superior formulation. Wouldn't you? That the mechanism of action is not new, that the active ingredient is not new, are both irrelevant to such patients.

Hope this clarifies....


-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: LRM216
Date Posted: Dec 01 2009 at 9:22pm
Unklez - you are correct about the Abraxane.  When I developed neuropathy immediately upon my first Taxol, my onc told me that in three weeks (instead of 2 wks as the taxol was to be done - and to see if the neuropathy would abate), she would then start me on the taxotere.  I balked at this as I felt the abraxane would be better cancerwise, as well as easier since the taxotere was still the twin to taxol.  She absolutely refused the abraxane saying the side effects, especially neuropathy, was worse than even the taxol.  I finished my last three rounds with taxotere and was fine.  My neuropathy from the first taxol is still with me, and annoying, but not debilitating.  It certainly never worsened, as she said it would not, on the taxotere.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: SusanE1104
Date Posted: Dec 01 2009 at 9:22pm
Dear Sapphireskies,
I don't pretend to understand all the info in the previous posts about Taxol.  But if it's any comfort to you, I had six months of Taxol with Avastin, and I had no pain.  I do have some neuropathy in my feet, but I don't regard it as a problem.  My nails were affected too, but again, it's a small price to pay for being NED after three months of treatment.  I had low dose treatments...three weeks on, one week off.  Maybe that made it easier.  I'm sure all of the chemo drugs are hard on our bodies, but if they allow us to live longer lives, I say bring them on.  I didn't see my drugs as poison, rather I saw them as live giving medicines. 
Good luck
Susan


-------------
Susan 62 1987 Stage 1   1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
8/09 NED
12/09 liver mets Taxol/Avastin
4/10 liver mets
11/22 Parp Car/gem
parp failed
2/2011 Ixempra


Posted By: 123Donna
Date Posted: Dec 01 2009 at 10:17pm
Unklez,

When I was having my last chemo treatment, the young lady sitting next to me was getting her Taxol treatment.  She was feeling OK and we were talking.  The chemo nurses kept watching her and one noticed she started looking a little flushed and kept asking her how she was feeling.  She again said Ok.  The nurse looked worried, said the patient was flushed, stopped the infusion and put her on oxygen.  She called the other chemo nurse over and paged the oncologist.  After much discussion, they continued with the treatment, but much slower drip and added more benadryl.  The patient did fine.  I often wondered why the chemo nurses would watch the patients and ask them how they're feeling.  I feel like they are taught to look for any signs of reaction to the chemo drugs and act quickly.  It's scary to think that at anytime, a reaction to chemo can occur.   


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: LRM216
Date Posted: Dec 01 2009 at 10:31pm
123Donna,
 
That is exactly what all the chemo nurses are supposed to do.  Watch us carefully without alarming us, but to be pro-active and be ready asap should something happen.  The compounds in the taxol (in particular) are what are so dangerous to the few women unfortunate enough to be allergic to them.  No one thinks of Taxol as "poison" per se, as it has saved millions of lives, but it is known that it could prove fatal to some individuals that are allergic to it.  Unfortunately, there is no test to tell before administering it, that is why you are loaded up with steroids and it must be dripped extremely slow.  My chemo center had crash carts very easily accessible to all the chemo nurses should someone begin to develop a problem.  Sounds as if your chemo nurses were on the ball and avoided any further problems with the lady sitting next to you.  I only pray they are all set up that way.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: unklez
Date Posted: Dec 01 2009 at 10:33pm
Dear Donna,

That is sort of like how it happened with my wife, ie nurses right by the chair and closely watching. They say most people who are sensitive get their reactions in the first 2 Taxol doses. She got the reaction (felt a choking sensation and extreme heat in chest and head, etc.) in the first dose and with less than 14 drops infused. The nurse was ready with a couple of syringes and I think she injected one of them very quickly in the drip. It was scary but the worst passed soon and she recovered in a few seconds. The oncologist recommended against continuing given the reaction was strong and early in spite of benadryl and decadron doses. Those few seconds tell you how fragile and small, yet important, our lives are. One pooof, it's gone.




-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: 123Donna
Date Posted: Dec 01 2009 at 10:39pm
Linda,

It sure made me appreciate the chemo nurses even more.  It takes a special person to work in the chemo, I mean Infusion room.




-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: 123Donna
Date Posted: Dec 01 2009 at 10:43pm
Originally posted by unklez unklez wrote:

Those few seconds tell you how fragile and small, yet important, our lives are. One pooof, it's gone.


Perfectly said.  I'm so glad that Onty is OK.

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: LRM216
Date Posted: Dec 01 2009 at 11:04pm
Donna,
 
Yes, they certainly are special, to say the least.  Mine were all angels and I felt so well protected by them.  When I went back for my 2nd round, I had a different nurse, and I was in a panic because I didn't have the same nurse as the first round.  How silly I was, I had a different nurse at least 5 times out of my 8 rounds and it would be a tough sell for me to choose one over the other as more special!
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: mainsailset
Date Posted: Dec 03 2009 at 2:15pm
I remember sitting there the first time and my heart started to flutter. I was fine after they slowed the drip but it is this overwhelming feeling with these drugs that everything happens so fast and we are so not in control. And how bizarre it was to have the man next to me pass out, alarms screamed, nurses raced around, doctors came flying in and somehow there we all sat, jaws dropped as a fellow patient was attended to whilst we all were still hooked up to this bottle of battery acid. It's all just amazing.

-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: SusanE1104
Date Posted: Dec 03 2009 at 2:36pm
I had a rather humorous situation once when a fellow patient had a reaction to her chemo.  I had just had my infusion of Benedryl and was drifting off to a nice nap when all the excitement started happening.  I was just TORN between forcing myself awake to take it all in and enjoying my nap.  The nap won out, but I kept one ear open to what was happening.  The patient was OK once they stopped the chemo and gave her some extra Benedryl.  They started it again later, and she was fine.

-------------
Susan 62 1987 Stage 1   1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
8/09 NED
12/09 liver mets Taxol/Avastin
4/10 liver mets
11/22 Parp Car/gem
parp failed
2/2011 Ixempra


Posted By: SagePatientAdvocates
Date Posted: Dec 28 2009 at 9:51pm
bump for a friend..

all the best,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: scared
Date Posted: Dec 29 2009 at 1:21am
I did not read the article, I read a lot of the posts here about Taxol.  My wife did 12 weeks of it and we put together our team of doctors and have complete confidence in their abilities.  Dr. Rinn of Swedish Cancer Institute is one of the best in the area, she is up to date on breast cancer and trials.  She stated that if we did what she recommended we would have an 85% survival rate.  

Sometimes, you just need faith and that God is somehow guiding the team for the best results possible.  It could drive a person CRAZY worrying about it.

So, we did what was best, and hope and pray for the best.  


-------------
Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.


Posted By: SagePatientAdvocates
Date Posted: Dec 29 2009 at 8:45am
Dear scared,

I believe Taxol may have helped save my daughter's life. She did not have the adverse reaction at infusion that some women have experienced. However, I think it is important that women realize that at times reactions can be severe. 

I have friends who are actively going through treatment. Taxol is to start in two days and I wanted them to know to be careful as the infusion started and if there was an extreme adverse reaction for them to be aware that the infusion should not continue and also to have cardio tests done before the infusion and to have her heart monitored.

Perhaps you are right....don't worry about this because the reactions are rare...and yes, it can make you "crazy" to be more vigilant but I think there is some value in knowing about Taxol's side effects. Certainly, having the knowledge can make you more anxious and the anxiety, angst itself is not healthy. I do not know that there is an easy solution.

After the last AC infusion I was waiting for my daughter in the waiting room and a woman asked me how she was doing. I told her that she was going to start Taxol at the next infusion. She told me "when I had Taxol, within a few minutes it felt like my bones were crumbling. I screamed in a way my husband had never heard. Make sure she tells them to stop if she has a severe reaction." To be honest, I debated telling my daughter but I decided it was best that she know and when she walked back to the waiting room the woman was still there. I introduced my daughter and they chatted for a few minutes and the woman repeated her warning to her..

In the car, on the way home "honey, I know that was upsetting..I debated about telling you." "no, I am glad you did, Daddy. Always remember that I am viewing this through 'knowledge is power' glasses. I want to know"...and then she fell asleep..she fell asleep as she said "know"..my little girl was so tired and when we got home she sat next to me to watch a movie and she was asleep before I could work the clicker. I held her as she slept and thought back to the first time I fed her, in the pediatric ICU (she was premature..by weight..she was a twin and weighed under 5 lbs. her brother was over and she had to stay in the hospital) her first meal. She drank 1.5 oz. of milk and I was sooooo excited, as were the nurses. It was probably one of the nicest moments of my life. 36 years later, I thought back to that moment and as I held her I realized she would always be my little girl, no matter her age. Five years later, that is still the case and I believe always will be. I am very proud of the work she is doing as a middle school guidance counselor but the "little girl" feelings remain. Strange combo, in a way..but there it is. 

scared, I am glad you have confidence in your physicians and I certainly understand and value your point of view. Good luck to you and your wife..

I think the only "for sure" thing in all of this is that cancer truly sux.

all the best,

Steve



 



-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: mainsailset
Date Posted: Dec 29 2009 at 10:51am

I believe there is merit in being a well informed patient so that one becomes an active partner in the team of caregivers.

As well as I thought I knew myself and my body, the process of going through treatments was one that taught and retaught me to be vigilant daily and never to hesitate to say stop or please read the pharmacist's label to be sure it is meant for me or no don't use Lidocaine, I'm allergic. My team was not unusual in that they cared deeply for me and my health but the onus was always on me to be their double checker and first responder.

-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: scared
Date Posted: Dec 30 2009 at 1:21am
I agree that you need to know and understand the pro's and con's of treatment.  For example if having chemotherapy will give you a five percent greater chance of survival then not having it that should be analyzed.  I read about the Taxol effects and we understood there were risks, but the entire treatment gave us a survival rate that we could live with weighing the costs for us it was worth it.

Each person is different and knowledge is the best tool you can have in the battle with cancer.


-------------
Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.


Posted By: trip2
Date Posted: Dec 30 2009 at 11:29am
I totally agree, knowledge is so important.
 
Thank heavens we now have this forum plus more and more news coming out about TNBC.
 
My first diagnosis I wasn't told what I had and honestly didn't know to ask too many questions.  I put faith in my Onc to give me the right treatment.  I was so clueless as many are. 
This forum was not here, didn't know what kind I had so until I got my act together and began reading did I finally know what was going on.
 
The second time I wasn't told either but I knew by then to ask questions, I had researched but it had been because I had gone thru it before.  For a first diagnosis you don't know these things unless you are told, the docs are doing better and I believe the patients are becoming smarter as observed in this forum.
 
I'm so thankful women have a place to come now, the need is huge to take it upon ourselves to learn but then some prefer not to.  It's a choice.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+



Print Page | Close Window

Forum Software by Web Wiz Forums® version 12.01 - http://www.webwizforums.com
Copyright ©2001-2018 Web Wiz Ltd. - https://www.webwiz.net