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warning about TAXOL

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    Posted: Apr 25 2009 at 5:27pm
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 know 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

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...my daughter did not have an immediate adverse reaction..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

Edited by steve - Dec 24 2010 at 9:13am
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote partner to one Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2009 at 5:54pm
Hello Steve,

My wife went through 12 weeks of taxol, the effects were not as drastic as the adriamycin and cytoxin combination she had taken for 15 weeks. What happened to us on her first treatment of taxol was that it was given very slowly. My wife was monitored for any adverse reactions and nothing out of the ordinary took place.

The fatigue factor was not as great as the previous chemotherapy, but then she started to experience numbness in her fingers and toes. She had watery eyes, and even a month after her last treatment some eyelashes were falling out.

After two months of being off Taxol there is no numbness of her fingers, the eyelashes have stopped coming out, there is only numbness in some of her toes, none in her fingers.

We had nothing bad happen from the infusion itself, all twelve went well. We do not know the results of getting Taxol, or radiation. We were told that these were necessary to eliminate whatever cancer remained in her body and gave her the best chance of survival and the best chance of the cancer not coming back. We trusted our oncologist and pray it worked. I pray it worked my wife has no doubt about it.

Is your daughter getting physical therapy for those pains? My wife is on the Active Program through Swedish Medical Center to get back her range of motion and her energy. I do recall my wife having body aches, but she appears to not have any now.




Edited by partner to one - Apr 25 2009 at 5:56pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2009 at 6:07pm
Dear partner to one,

It's interesting-my daughter had much less trouble with the AC then the TAXOL and I am delighted your wife tolerated the drug and had minimal side effects..

I am not saying, at all, that my daughter should not have taken the drug. For all I know it has helped keep her NED. I just wanted to alert folks here that rarely, things can happen, and you should try to be prepared.

All of my daughter's infusions of TAXOL went well but the side effects were harsh...

My daughter is very active physically...but does still have aches and pains..she swims, bike rides and is on the treadmill almost every day.

I wish your wife a good recovery and especially NED forever..

I will be with her in NY on May 19th..she works as a guidance counselor in a public middle school on Long Island...she is taking the day off and we will spend the day together..the 20th is her 41st birthday..I am really looking forward to seeing her...

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote partner to one Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2009 at 8:47pm
Hi Steve,

I guess that is why they say each person reacts differently to chemotherapy. I am happy that you and your daughter will be having a great time together! I believe strongly that it is family that makes cancer bearable.

I wish my wife folks stuck around for my wife's cancer treatments, they left after her mastectomy and she was in the start of her Taxol. Towards the end my wife told me she wished her mom was here.

I am glad your daughter has family to help her. My wife's mom and dad will be here next week. I cannot wait!

Dave
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alison41 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2009 at 10:57am
Hi steve
 
It was interesting to read you comments, before I started on Taxotere my onclogist went through all the possible side effects that I might expect so I was pre warned.
 
I was also reassured by my chemo nurse that if there were any reaction to taxotere they had everything to deal with and it so happens that 9 minutes after my first infusion I had an adverse reaction, which was dealt with quickly but in a orderly manner consequence was that I had to have a piriton and also they gave me the drug over a longer period, which was tolerated and I went on to have all four doses without any problems.
 
I am also experiencing the bone and muscle aches now, but hopefully it will wear off,  just waiting for surgery now.
 
Can I also ask you a question does you daughter do anything different ie. diet seen as she is 4 years plus from dx.
 
I have been viewing your positings and read then with interest, would love to hear from you if you want to PM me.
 
Ali
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Post Options Post Options   Thanks (0) Thanks(0)   Quote daffodil Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2009 at 12:43pm

Hi Steve,

I am glad your daughter was able to tolerate Taxol.  I was not so lucky and after two of the scheduled 12 infusions had to stop.  I broke out in a red itchy rash all over and suffered severe heart palpitations.  The rash lasted a number of weeks, however, I still get heart palpitations from time to time.

Daffodil

It came to pass not to stay.
Lumpectomy August 2006. No lymph node involvement. AC x 4
radiotherapy 30 sessions. Taxol lasted 2. Clear so far!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote living4today Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2009 at 1:07pm
Hi Steve,
Thanks for the information about Taxol.  I had my first dose of taxol 3 1/2 weeks ago.  My reaction started about 6 hours after infusion, 188 heart rate, shortness of breath, etc...oncologists think it may have been reaction to the steroids.   The last two treatments have been Abraxene.  Still have a range of side effects, bone and muscle pain bad today, but hoping that chemo works. 
 
 
I, too would be interested if your daughter has changed diet, etc....
 
Best wishes to her!  (intertestingly I turn 41 on the 17th of May.)
 
Living4today
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2009 at 2:22pm
Dear Daffodil,

sorry about your reaction...and may the "Clear so far!!!" written in your signature be forever!!!!

good luck to you..

Happy birthday, in advance, Living4today!!!!!!!! I will be thinking of you.
I have two children born the 18th of May five years apart..they will be 29(daughter) and 24(son) this year...they are both BRCA1 negative and then I have twins born May 20th, 1968...my daughter is the one TNBC
and my son "doesn't want to know" about his BRCA status..

My daughter has changed her diet and I will post the information here. I would like to do it after I see her on May 19. It's just easier when we have a whole day together to discuss stuff..

Thank you for your good wishes..

all the best,
Steve

p.s. Ali, I sent you a PM as you suggested..

Edited by steve - Apr 26 2009 at 2:42pm
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2009 at 7:45pm
I had a reaction the first time, too--shortness of breath, heart palpitations. The crash kit they had on hand wasn't working properly, so they stopped the drip and found another kit. 

They gave me that 2-4% figure as well, but I saw another person have a reaction while I was doing another round, and personally know two people who had reactions.

The nurse told me later that she calculates about 20% have at least a mild reaction.


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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2009 at 8:58pm
Dear Donna,

thank you so much for your post..

when I first wrote this thread I had no idea if anyone would respond...or if there were some bad experiences out there...when the incident happened
while we where in the oncologist's office and after speaking to the woman in the waiting room I figured there were others out there but your post
put a new perspective on all of this..

and again I am not saying don't take the drug..just please make sure all precautions are done and a crash cart (with someone available who knows what they are doing on staff) is nearby.

I pray that in the years to come better chemotherapy will be available with less onerous side effects and my ultimate prayer is that TNBC can be dealt with, some day, without putting poison in your body.

I think this is a pretty extraordinary community...

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2009 at 4:49am
My dear friend Steve,
 
First, hiya!!  Haven't had a chance to welcome you to this site.
 
Second, I have to tell ya, I had NO bad reaction to Taxol.  In fact, along with the Carboplatin, Avastin, and Erbitux that I was taking at the same time, I had mild side effects and reactions (as you may recall, because you were there for one of my infusions).  The first time I had Taxol, they gave me the premeds and then infused the taxol pretty quickly.  I started wheezing (I have asthma) and they asked me if I was allergic to trees. I am and so they slowed the drip to double the time, and I was fine for the remainder of my treatment.
 
Everyone is different.  Perhaps a different type of taxane would be better for some.  Probably the best thing would be for infusion staff and docs to take an assessment prior to choosing a particular type of chemo and proceeding accordingly.
 
Love,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote minniemouse Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2009 at 5:56am
Do taxol and taxotere carry the same side effects? I just had my first round of chemo last week -- cytoxan with taxotere -- and except for wicked morning fatigue, aching lower back and, starting last night, mouth sores, I'm feeling pretty good. 
I'm not in denial, but at 62 I want to focus on the positive. A friend of my daughter's who had cancer told her yesterday that hers had been estrogen positive and "not the fatal kind."  My daughter freaked out, because she knows mine is negative. I tried to reassure her, but I guess I need reassuring myself.
 
minniemouse
 dx 2/27/09 TNBC; 1.5 cm; lumpectomy; clear margins; nodes negative; BRCA negative 
 
 
   
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2009 at 6:41am
an ingredient in taxol is the chemical that can cause an allergic reaction, cremaphor (sp)  abraxane does not have cremaphor.

minnie,
i don't know if taxol or taxotere have the same side effects.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2009 at 6:59am
Dearest Caryn,

thanks for your welcome, dear friend...by the way I am delighted you had a good weekend...your update this morning brightened my day enormously.

it's funny, how the mind works, but the thing I remember the most about visiting you at CTCA was my first impression of you(I can still see you in my mind's eye) sitting in the cafeteria,on your laptop: I was instantly certain it was you because your radiance and intelligence was so apparent despite the procedures you were enduring. I think later in the day you had a radiation treatment as well and I remember you walking out, clearly whipped, but very happy to be done.

I don't know if you remember but I offered to drive us to your home and you firmly told me..."no, thanks, I got it." That resonated with me today when I read in your update that you drove over the weekend.

Later that night I reflected on our meeting and what impressed me the most and continues to impress me...was your courage and spirit...I told you then and I tell you today that I feel you will beat this. Your positive attitude is perhaps your best weapon and I feel you have been an inspiration to me and many others.

and it is not "blind" courage...you look intelligently at everything that is going on and understand it but your spirit is the key and also I believe your compassionate heart helps you...reaching out to others to be supportive while you are going through your own difficult battle says a lot about who you are as a person. I have seen that quality in others here. Women going through chemo, often with difficult side effects, posting messages of encouragement to others going through the same.

It is extraordinary to me to see that...absolutely marvelous women.

as I have told you before, I truly admire you. I am honored to be your friend.

in your corner, always,

Steve

HI MInnie,

I believe "clear margins, negative nodes and BRCA negative" are very important words and I want to reassure you that you will be o.k. I pray the chemo does its thing for you..the same way I prayed for my daughter, now almost five years out..

here are some taxotere(docetaxel) side effects from-

http://www.chemocare.com/bio/taxotere.asp

How Taxotere Is Given:

Taxotere is given through a vein (intravenously, IV)
There is no pill form of Taxotere
Premedication with a corticosteroid pill starting a day prior to Taxotere infusion for 3 days is given to reduce the severity of fluid retention and allergic reactions. Your doctor will prescribe the exact regimen.
The amount of Taxotere that you will receive depends on many factors, including your height and weight, your general health or other health problems, and the type of cancer or condition being treated. Your doctor will determine your dose and schedule.
Taxotere Side Effects:

Important things to remember about Taxotere side effects:

Most people do not experience all of the Taxotere side effects listed
Taxotere side effects are often predictable in terms of their onset and duration
Taxotere side effects are almost always reversible and will go away after treatment is complete
There are many options to help minimize or prevent Taxotere side effects
There is no relationship between the presence or severity of Taxotere side effects and the effectiveness of Taxotere.
Taxotere side effects and their severity depend on how much Taxotere is given. In other words, high doses of Taxotere may produce more severe side effects).
The following Taxotere side effects are common (occurring in greater than 30%) for patients taking Taxotere:

Low white blood cell count (this can increase your risk for infection)
Low red blood cell count (anemia)
Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.

Onset: 4-7 days
Nadir: 5-9 days
Recovery: 21 days

Fluid retention with weight gain, swelling of the ankles or abdominal area.
Peripheral neuropathy (numbness in your fingers and toes) may occur with repeated doses. This should be reported to your healthcare provider.
Nausea
Diarrhea
Mouth sores
Hair loss
Fatigue and weakness
Infection
Nail changes (color changes to your fingernails or toenails may occur while taking Taxotere. In extreme, but rare, cases nails may fall off. After you have finished Taxotere treatments, your nails will generally grow back.)
These Taxotere side effects are less common, meaning they occur in 10-29 percent of patients receiving Taxotere:

Vomiting
Muscle/bone/joint pain (myalgias and arthralgias)
Low platelet count (This can increase your risk of bleeding)
Increases in blood tests measuring liver function. These return to normal once treatment is discontinued. (see liver problems)
Infusion-related Taxotere side effects (symptoms which may occur during the actual treatment) include:

Allergic reactions (rash, flushing, fever, lowered blood pressure). Happens rarely, usually occurs in the first or second infusion. Frequency is reduced by premedication with corticosteroid starting one day before infusion. You will be monitored closely during the infusion for any signs of allergic reaction.
Infusion site reactions (uncommon and generally mild, consist of darkening of the vein, inflammation, redness or dryness of the skin, or swelling of the vein).
Not all Taxotere side effects are listed above, some that are rare (occurring in less than 10% of patients) are not listed here. However, you should always inform your health care provider if you experience any unusual symptoms.

......

Good luck to you, Minnie!!!!!!

all the best,

Steve




Edited by steve - Apr 27 2009 at 9:41am
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote minniemouse Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2009 at 9:25am

thanks, steve, for the kind reassurance and information. . i seem to develop new allergies every day, so i need to be on the lookout. that information was helpful.   I should feel lucky, because I have avoided so far the worst of those side effects.

minniemouse
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2009 at 9:45am
Dear Minnie,
 
First of all you should not have mouth sores. Didn't your onc give you "the magic mouthwash"? If he/she did not....SHAME ON THEM!!! You need to call today and tell them you want that. The sores will not get better, only worse.
 
Also are you getting either the Neulasta or Neupogen? My daughter Lori had the Taxotere, and it was prety rough. She had ACT all 3, every 3 weeks for 6 treatments. She still has side effects...the neuropothy, and last chemo was November 2007. Isn't that special!! Oh, and she lost her eyelashes and brows 5 times!
 
The HER2+ is more aggressive than the HER2-, so that is on TN's good side!!
 
I see where you are typing your stats, so I am going to send you my email in a private message. I want you to send me an email so that I can give you more info on the many resources here on the site.
Hugs,
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote minniemouse Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2009 at 7:04am
I'm medicated with magic mouthwash and happy again.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2009 at 11:02am
Minnie,
 
Did you tell them that Nancy said..."Shame on them for not giving the mouthwash to you before you started chemo"?Angry They should be bringing you roses for every treatment now!Wink
 
Honestly where are their heads? That's why we have the chemo and rads tips, and that way these oncs know you mean business, and want everything that you will need before you need it.
Hugs,
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2009 at 11:17am
Nancy you are 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2009 at 1:05pm
Steve,
 
Do these oncs even know the side effects? Seems to me from what the gals here report that they do not! If I can read the articles, then they should be able to also, and make sure that every person receiving this drug or any chemo drug, has everything they need BEFORE starting treatment. Lori had every med that she needed and with the exception of the first treatment did not hurl, and never had mouth sores.
 
First chemo she had a big Wendy's frosty, and that was her downfall. She hurled until she was almost dehydrated. She was one step from going to the ER. Of course, we all know that the ER doctors do not have a clue as to what to do, so you really have to call the onc.
 
Let's see these are the side effects....
 
Women considering taking Taxol should consult their physician. Everyone experiences side effects differently. Side effects of Taxol (and taxanes) may include:
 
I love that they say may include...Give me a break...Unhappy
 
    *hair loss...can be helped with the cold caps, but Caryn has said not to use them
     *numbness of the fingers and toes ...can be helped with Turmeric and vitamin D3, but drug companies tell you that any vitamins/supplements could possibly reduce the effectiveness of chemo, even though there are no studies to prove that.
  • neutropenia - a decrease in white blood cells which may increase the risk of infections ...give them the Neulasta or Neupogen, or they may spend a week in the hospital like Janet did, and then the insurance companies will be paying big time!!
  • nausea and vomiting ...give them the Emend...golden med to reduce nausea...but insurance sometimes will not pay unless you get really reallly sick!! IDIOTS!!
  • headaches...there are many pain medications, and sometimes just tylenol extra strength helps...and sleeping in a recliner!! Doctors don't know that one. 
  • mouth sores ...give them the magic mouth wash to use even before they start infusing!!
  • aching or pain in joints and muscles ...Vitamin D3, and again the pain meds and hot baths and moist heat...doctors don't tell you that either!!
  • diarrhea ...immodium and many others
  • skin rash ...they have meds for that also, and that is usually an allergic reaction.

So, then why do many of these women have to fight for what they need? Because their doctors are not well informed.

Hugs,
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
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