Taxol Rarely Triggers Fatal Reactions

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. 

Connie,

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?

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.

Dear LRM216,

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!

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









Edited by steve - Jul 04 2009 at 10:05am

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.

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."