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MsBliss
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Posted: Jun 30 2009 at 5:50pm |
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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?
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SapphireSkies
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Joined: May 24 2009
Location: Madison, Wisconsin
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Posted: Jul 01 2009 at 3:03am |
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
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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. ;)
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JanetK
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Posted: Jul 01 2009 at 3:31am |
paclitaxel (Taxol®), 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
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TNBC feb 13,2009
2.6x 3.5
neoadjuvant chemo 8 rounds
Lumpectomy successful Oct 09
axillary node dissection Nov 09
still awaiting results
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dmwolf
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Posted: Jul 01 2009 at 8:39am |
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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
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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.
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JanetK
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Posted: Jul 01 2009 at 10:47am |
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I did taxotere x4, 21 days apart.
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TNBC feb 13,2009
2.6x 3.5
neoadjuvant chemo 8 rounds
Lumpectomy successful Oct 09
axillary node dissection Nov 09
still awaiting results
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trip2
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Location: Under Palm Tree
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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.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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mefowler
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Location: Topeka, Kansas
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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
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
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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
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dmwolf
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Posted: Jul 01 2009 at 11:53am |
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Wow, I'm really surprised. We definitely do not see that in the cell lines. Thanks for the post! -Denise
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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.
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Amanda
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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
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gpawelski
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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?
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Gregory D. Pawelski
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SagePatientAdvocates
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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
Edited by steve - Jul 01 2009 at 4:03pm
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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
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MsBliss
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Posted: Jul 01 2009 at 2:13pm |
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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.
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MsBliss
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Posted: Jul 01 2009 at 3:29pm |
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Your postings are very eye opening. Ten Thousand Thank You's.
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MsBliss
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Posted: Jul 01 2009 at 3:52pm |
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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.
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mefowler
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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
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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
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gpawelski
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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.
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Gregory D. Pawelski
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Shelly Rae
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Posted: Jul 01 2009 at 6:09pm |
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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.
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alene
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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... 
Edited by alene - Jul 01 2009 at 7:24pm
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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
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trip2
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Posted: Jul 02 2009 at 2:50am |
Good morning everyone,
First of all thank you so much for the thoughtful supportive comments. 
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.
Edited by trip2 - Jul 02 2009 at 4:48am
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Stage 2 2003
Stage 1 2007
BRCA 1+
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Nancy
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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
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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
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