warning about TAXOL
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Topic: warning about TAXOL
Posted By: SagePatientAdvocates
Subject: warning about TAXOL
Date Posted: Apr 25 2009 at 5:27pm
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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 ------------- 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 |
Replies:
Posted By: partner to one
Date Posted: Apr 25 2009 at 5:54pm
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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. |
Posted By: SagePatientAdvocates
Date Posted: Apr 25 2009 at 6:07pm
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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 |
Posted By: partner to one
Date Posted: Apr 25 2009 at 8:47pm
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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 |
Posted By: Alison41
Date Posted: Apr 26 2009 at 10:57am
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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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Posted By: daffodil
Date Posted: Apr 26 2009 at 12:43pm
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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! |
Posted By: living4today
Date Posted: Apr 26 2009 at 1:07pm
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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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Posted By: SagePatientAdvocates
Date Posted: Apr 26 2009 at 2:22pm
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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.. ------------- 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: sibu
Date Posted: Apr 26 2009 at 7:45pm
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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 |
Posted By: SagePatientAdvocates
Date Posted: Apr 26 2009 at 8:58pm
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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 |
Posted By: CarynRose
Date Posted: Apr 27 2009 at 4:49am
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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 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: minniemouse
Date Posted: Apr 27 2009 at 5:56am
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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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Posted By: krisa
Date Posted: Apr 27 2009 at 6:41am
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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. |
Posted By: SagePatientAdvocates
Date Posted: Apr 27 2009 at 6:59am
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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 ------------- 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: minniemouse
Date Posted: Apr 27 2009 at 9:25am
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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 |
Posted By: Nancy
Date Posted: Apr 27 2009 at 9:45am
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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 |
Posted By: minniemouse
Date Posted: Apr 29 2009 at 7:04am
| I'm medicated with magic mouthwash and happy again. |
Posted By: Nancy
Date Posted: Apr 29 2009 at 11:02am
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Minnie,
Did you tell them that Nancy said..."Shame on them for not giving the mouthwash to you before you started chemo"?
 They should be bringing you roses for every treatment now! 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 |
Posted By: SagePatientAdvocates
Date Posted: Apr 29 2009 at 11:17am
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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 |
Posted By: Nancy
Date Posted: Apr 29 2009 at 1:05pm
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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...
 *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.
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 |
Posted By: minniemouse
Date Posted: Apr 29 2009 at 1:15pm
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It took three days for the sores to come, but then my mouth exploded! As soon as I called, they phoned in the RX, but I do wonder why they thought I might be the 1 in 1,000 patient not to get them.
Nancy, thanks for the tip on sore joints. My lower back is throbbing. I'll try the moist heat. What about the D3? Are there any studies at all on its effectiveness?
minnie
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Posted By: Nancy
Date Posted: Apr 29 2009 at 2:07pm
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Minnie,
Again. I must tell you that you have to speak to your onc about vitamins, but if it were me I would say sc*** them, but...it is not me!! Just nothing on the days that I mentioned. You really have to get that book that I have now mentioned at least 100 times...Anti Cancer, bu David Servan-Schreiber, He talks about the NK...natural killer cells that we all have and how they work. He had brain cancer twice, and took everything while on chemo.
D3 plays a very huge roll in our overall health, and it has to do with our immune system. I have posted so many articles on the news forum as to exactly what it does, and yet I know that many of you are just too ill to go there and read. There is one on the first page. In fact, I just posted a link yesterday for a clinical trial as to D3 for therapy for breast cancer. I also posted the link in the TNBC Talk forum.
Now, I have questions as to this study becuse it is funded by the Department of Defense and is there a possibility that they will try to discredit what many are now saying, that D is one of the answers, if not THE answer to many of our illnesses./diseases. This would not make the pharmaceuticals very happy, as they can not market D. It is all so political when it comes to stepping on the toes of the drug manufacturers.
Also, will this be another one of those stuidies where they only give the women 400 iu's a day, which doesn't do jack sh** for anyone, and then state they could not say conclusively that taking D has any effect on BC? Dosages of 10,000 iu's and much more a day is what they need to use. Most doctors look at you like you have 3 heads when you even ask for the vitamin D level test. That's exactly what Bev's doctor did the other day. She asked Bev what it was!
The information that I believe I gave you was mostly from the Vitamin D council, which is a non profit orgaization. They study the effects of D and have stated that even pregnant women should be taking D, and then their babies a soon as they are born.
I cannot impress on all of you the importance of this very simple vitamin, and also getting out in the sun as much as you can without any damn sunscreen, as that blocks 95% of the rays that you need to keep you healthy. Also, there are chemicals in the sunscreen, so why on earth would anyone want to use sunscreen? The crap that they market is unbelievable, and it does us more harm than good. However, since you are on chemo, they tell you to stay out of the sun. I do believe that is for the day of chemo and for a few days after. Lori took chemo starting in August and was out ther running/walking/biking every time she felt well enough and it was in the sun.
Again, ask you onc or ask to see the article which states the sun can harm you while on chemo. See Minnie, I do not ever take their word, I want to see it in writing. If they cannot produce proof, then I take matters in my own hands. GOOGLE IT!! I research everything!
Also sweetie, you want to be walking when you feel well enough, not for long distances, but just short walks, as this will help with the joint pain, and soak in a tub of hot water as often as you can. Lori said the more she moved/walked/ran, the better she felt. Then she would soak in the tub at night before going to bed. Try that as then maybe you will sleep without as much pain.
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 |
Posted By: minniemouse
Date Posted: Apr 30 2009 at 4:51am
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Yes, I've got that book. Very useful information and well-researched. Unfortunately, there is a lot of contracdictory information on chemo side effects, treatment, etc -- even coming from the doctors' offices themselves!! Feels like a lot of trial and error.
I started walking the day after chemo, even though I was draggin'. Definitely made me feel better. My back was really hurting last night, but I think I was just overtired. Feels better this morning.
I'm thinking that early morning and late afternoon direct sun, for 10 minutes at a time, can't hurt. Going to start that today.
Minnie
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Posted By: Sunris
Date Posted: May 08 2009 at 10:12am
I have had 6 treatments ( of 12) so far of Taxol ( Paclitaxel) and have not had any adverse affects so far. I have lost my hair ( still have eyebrows & my extremely long eyelashes  , gosh I wish I wouldn't lose them....but oh well. Still have 6 more Taxol treatments to go so we'll see, but like I said...no effects to the drug so far....oh wait...I have had some swelling in my lower extremities ( controllable) ..
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Posted By: minniemouse
Date Posted: May 08 2009 at 11:42am
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I posted this on another thread, but I finally found out that the taxotere aching back lasts about 7-10 days after each chemo treatment. my doc recommends 30 mg of glutamine a day. I bought the powder from a health food store and started taking 10 mg three times a day. It's supposed to help prevent neuropathy too. Will let you know how it works after 2nd round of chemo next wednesday.
I started losing my hair the other day. Finally had my husband shave it all off and I feel much better. I hope I keep my lashes too!
Good luck with the taxol. Sounds like you're doing great. ------------- 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: trip2
Date Posted: May 08 2009 at 5:50pm
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Hi Sunris, half way there, you can see the light at the end of the tunnel and how nice your side effects have not been very bad!
Minniemouse thank you for the good tips. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: May 08 2009 at 6:19pm
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Hi Minniemouse,.,
My gosh what a horrible thing for your daughter's friend to say to her. I assume her friend knows you've been diagnosed.
You know we talk about this frequently because occasionally a member hears a comment like what was said to your daughter or other iodiotic comments coming from people who should keep their mouths shut.
I am not making comments about your daughter's friend it is just that people say things sometimes and they don't realize how much it hurts.
I'm so sorry.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: minniemouse
Date Posted: May 09 2009 at 1:05pm
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Pam,
Thanks for those words. I think sometimes people just don't think before they open their mouths. I think I was able to assure my daughter I have a lot going in my favor.
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: Tina L
Date Posted: May 17 2009 at 3:22am
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Dear Steve, Hi my name is Tina, I am 53 years old and was dx with triple negative IDC on April 8th. I am currently on Chemo (adriamycin/Cytoxan) very two weeks for 4 rounds and then will start Taxol every week for 12 rounds. I am so scared after reading your post about Taxol that I DON"T want to take it at all! This is horrible, not only can the Cancer itself kill you but , so can the meds that are suppose to get rid of it? This sounds like a no win situation to me. I think I would rather take my chances with the BC than die from the medication. This is Crazy, don't they have ANY safe drugs for this? I am petrified to take this drug, I don't want to die!!!!!!! |
Posted By: Sunris
Date Posted: May 17 2009 at 2:28pm
|
Tina,
Just as Steve stated, he is not saying his daughter should not have taken Taxol, but instead his concern was for the side effects . I have had 7 treatments ( of 12) of Taxol and have had extreme minimal side effects. It is different for each and every person. If you read side effects of many drugs, you will find some stuff that will scare the living s*** out of you. We can just hope that we aren't that one random person that has the most horrific of side effects. After my 12 Taxol I will be on FAC for 12 weeks ( 1x wkly every other week) ...then I will be facing the final surgery decisions ( BRCA test results still not in...should be mid week this week) .. |
Posted By: trip2
Date Posted: May 17 2009 at 4:21pm
Sunris, I hope your BRCA test come in negative! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Sunris
Date Posted: May 17 2009 at 4:28pm
|
Pam,
Thanks sweetie. Ya know, I'm still facing the whole option of double mastectomy even if my BRCA test is neg. As good as lumpectomy sounds , I'm horrified at knowing all that tissue will still be there to possibly have a recurrence or a new cancer. Ugghh!!!! Decisions!! |
Posted By: SagePatientAdvocates
Date Posted: Feb 02 2010 at 11:30pm
|
bumped up for Kerry OK and Brad... don't want to freak you guys out but the first infusion is extremely important...if possible, please make sure you have your heart checked out before the infusion, they give you the drug slowly and that if you feel weird please tell them to stop... 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: TNBC_in_NS
Date Posted: Feb 03 2010 at 12:53pm
|
Hi Ladies and Steve:
I have posted before that I had Taxotere x 4 rounds and was severely allergic to it, but they knew right away what to do and it was done. They slowed the infuison down and that took two hours rather than one, but it was well worth it! Taxotere is the only thing that is going to hit these cells the hardest!! Take it and go with the flow, the nurses are great! Benedryl, Decadron, Nupogen injections, all that for each round but it worked! I had the like heart attack pains, the throat closing over all that but through it all, I just said "Lord do your work" and He did through the nurses and doctors. We need to have faith and know that these people work with this every day and they know what to do. It is all knew to us, so let go and be calm that is the best thing to do.
Yes, I lost my beautiful silver, natural curlie hair, eyebrows, eyelashes,
 but I am still here and I still have my sense of humor!!! That makes up for the other losses. I also check myself out in the mirror the other day and since I had so much trouble with two surgeries, etc. I finally looked and I have one headbeam straight on the other one is due south, but I am still here and I have my sense of humor - Look out world, here she comes.  This next two months I will be strengthening my body and trying to get out more. My WBC 's are still low so I still need to be careful, but I am going to get back on my feet and stay there. Still waiting for my BRCA 1/2 tests results and then it will be all behind me.Good Journey to you all and no matter what, we are here for each other!!!
 God Bless, Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: Lillie
Date Posted: Feb 03 2010 at 4:47pm
|
Hi Ladies and Steve,
I did not go to a large well know hospital for treatments, but the town I live near has one of the best oncologists that money can pay for. He tells you everything, pulls no punches, is really on top of the game. I WAS LUCKY to be referred to him by my surgeon... I had 4 bi-weekly, double dose infusions of taxol in October and November of 2006. I also had adriamician in August and September of 2006. I had a muga scan to check my heart before any treatments started and another one after the adriamician treatments ended. So they knew my heart was strong enough. I was given information on the side effects of taxol and knew it might be rough, but also was told that for the best results in my chemo regimen, I really needed taxol or taxatere. The day of my first taxol treatment the nurse hooked me up to a blood pressure cuff, a blood oxygen count machine and checked my heart every five minutes. She sat right beside me and slowly administered the drug for the first hour to be sure all was OK. I was told to let her know of ANY symptoms that seemed out of the ordinary. I did not have any abnormal reactions. Thank God.... The next three infusions were administered in half the time since I had no adverse reaction to the first one. I did have bone pain in my back and legs, neuropathy in my hands and feet,fatigue and low blood counts. You may think I was stupid and naive, but when my Oncologist told me that I really needed the Taxol I believed him, so I made up my mind to deal with the side effects. I did not have the chemo brain associated with A/C. That made it a little better. My hair, eyelashes, eyebrows and all other body hair was long gone before I started taxol, so that was no concern. Just kept wearing my hats and wig. To this day I still have residual effects from all of the chemo... BUT, 3 years and 7 months after diagnosis I am still NED. Girls, Pray for strength... Keep your chin up... Grit your teeth.... but if at all possible, take what you need to take to SAVE YOUR LIVES. I hate cancer as much as any of you; but I got it so I have to deal with it. Love in Christ... Lillie ------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
Posted By: SagePatientAdvocates
Date Posted: Feb 03 2010 at 5:02pm
|
Dear Lillie, Thank you for writing about your experience with Taxol... It is my understanding that it is essential to let the infusion nurse know IMMEDIATELY if there is a negative reaction when you start getting the Taxol, or as others have reported, even after the infusions. But, especially, rarely, there can be immediate negative reactions... And how or even should I write this when Kerry and Cristy are starting Taxol treatment soon? The last thing, on earth, I want to do is fill someone with angst/anxiety but I am a great believer in "knowledge is power" and certainly no one (including, obviously, her oncologist) shared the possible side effects with her. That was for me to discover. So, Kerry, Cristy, Brad and Scott I hope you understand. I don't know if your oncologists will treat things as Lillie's did or whether you would have had the same experience my daughter had...no real preparation. I just didn't want to take the chance that it would be the latter. good luck to both of you and all others out there that may embark of Taxol. It is still actively used in our community and my daughter had AC + Taxol for four months and she is now five years NED. Others, unfortunately have had different results. All any of us can do is follow the advice of competent physicians and then try, as best we can, to keep fighting and have a positive attitude. Lillie, my daughter, as well, did not have any immediate negative reaction but experienced all the other side effects you mentioned....and others here have reported "Taxol was a breeze and AC was awful." Thanks again for sharing...everyone else, too...that is what this community is about!!! 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: Lillie
Date Posted: Feb 03 2010 at 8:49pm
|
Hello Steve and Girls,
My surgeon told me I was triple negative. He ordered the FISH test to be certain. My oncologist told me I was triple negative. Initially I did not know what that meant except "red flags" went up when i was told I wouldn't be taking tamoxafin or herceptin. Everyone I knew with breast cancer took one of those drugs after chemo. I also believe that "knowledge is power". In retrospect, my oncologist gave me the knowledge I needed to be prepared for the taxol. I was also part of a clinical trial (gymzar was added to my regimen). I will say that when you are participating in a clinical trial all the i's are dotted and the t's are crossed. (There is a lady whose sole purpose at that clinic is to be in charge of everything that happens to clinical trial patients). That could be some of the reason I was as knowledgeable as I was. (There was a Protocol for everything that took place during my 4 months of treatments). Still, I was acting on Blind Faith... I had no TNBC site to come to and find out that there are others who've been there and done that. Kerry, Cristy, Brad and Scott; you do have this site and people sharing with you left and right. Let your doctors know that you are not in the dark and ask them to please "Give You The Knowledge" you need to get through this time and take the proper steps to insure success. Steve: I am aware that sometimes all of these steps are taken and it is just not enough. It doesn't always work. In your daughter's and my situation it seems to be working, so we step out there as "beacons" for those who are just beginning the journey. Does this make any sense? Love in Christ, Lillie ------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
Posted By: unklez
Date Posted: Feb 03 2010 at 9:50pm
|
Steve, What does MUGA have to do with Taxol? ------------- 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: Kerry OK
Date Posted: Feb 03 2010 at 10:19pm
|
Steve and Lillie
Thank you so much for all of the information. It is overwhelming but with your support and knowledge we are ready to get started so we will be cancer free too! Kerry has her first round of Taxol on Friday. She does not have a port yet, but the doctor said it would be ok to take in the vein this first treatment. The port goes in on Monday. We are going to the oncologist tomorrow to find out more about the precautions. You guys have been great~you are a wealth of information!
Brad and Kerry ------------- DX 11/11/09, IDC, <.5cm, 0-2 Nodes, Stage I, Grade 3 TNBC, Lumpectomy 11/27/09, Age 53 Treatment begins 2/5/10, 12 wkly doses Taxol, 4 doses every 2 wks of A C Then 6 wks Rads |
Posted By: TNBC_in_NS
Date Posted: Feb 03 2010 at 10:27pm
|
Unklez:
The MUGA is a wall motion study of the heart. They sometimes do that to ensure the heart is in good enough condition for the medications. My girlfriend had it done with one of her meds, I don't think it was Taxol? I had the Taxotere and did not have the MUGA so I am not sure why they are talking about that test?
Hope that helps, Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: TNBC_in_NS
Date Posted: Feb 03 2010 at 10:32pm
|
Ladies:
I noticed that we forgot to mention - drink lots of water before during and after your chemo! That is the secret....to the madness. At least that is what I found.. Keep yourself pumped up! You can do it!!
We are rooting for you all!
Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: SagePatientAdvocates
Date Posted: Feb 03 2010 at 10:40pm
|
Hi unklez.. here are some side effects- http://breast-cancer.emedtv.com/taxol/taxol-side-effects.html - http://breast-cancer.emedtv. n Introduction to Taxol Side EffectsAs with any medicine, side effects are possible with http://breast-cancer.emedtv.com/taxol/taxol.html - Taxol ® ( http://lung-cancer.emedtv.com/paclitaxel/paclitaxel.html - paclitaxel );
however, not everyone who takes the medication will experience
problems. In fact, most people tolerate it quite well. If side effects
do occur, in most cases, they are minor and either require no treatment
or can easily be treated by you or your healthcare provider.
(This article covers many, but not all, of the possible side
effects with Taxol. Your healthcare provider can discuss a more
complete list of Taxol side effects with you.)
Taxol has been studied thoroughly in clinical trials, in which a
group of people taking the drug have side effects documented. This way,
it is possible to see what side effects occur, how often they occur,
and how they compare to people not taking this drug.
In these studies, the most common Taxol side effects (used alone
or in combination with other chemotherapy medications) included:
Other common side effects, occurring in 3 to 80 percent of people, included:
About the procedure A MUGA scan is much like a http://www.cancer.net/vgn-ext-templating/v/index.jsp?vgnextoid=a8a6a67053480110VgnVCM100000ed730ad1RCRD - computed tomography (CT) scan ,
and is performed by a nuclear medicine or radiology technician at a
hospital. In most cases, the test does not require you to stay in the
hospital overnight. During the test, a small amount of a radioactive
material, called a tracer, is injected into a vein, usually in your
arm. This material is much like a dye and binds to your red blood cells
(blood cells that carry oxygen throughout your body), making it easier
to see how blood moves through your heart. After you have received the
tracer, you will lie on a table and the technician will put a gamma
camera (a special camera that uses gamma rays together with a tracer)
above you and take pictures of your heart. ------------- 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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Posted By: unklez
Date Posted: Feb 03 2010 at 10:44pm
Helen,
Thanks. My understanding is the same as yours that MUGA is used to study
the heart. I also know they do it for Adriamycyin because it is a known culprit and causes heart wall motion issues. I'm just not sure why Steve
says it should be done for Taxol also. That's why I'm asking him for clarification. Knowing Steve I'm sure he has reasons for saying so, even if this is not common medical practice. ------------- 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. |
TNBC_in_NS wrote:Posted By: unklez
Date Posted: Feb 03 2010 at 10:45pm
Thanks for clarifying Steve. I knew you had to have a reason.... ------------- 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: Lillie
Date Posted: Feb 04 2010 at 10:54am
|
Hello Unklez, Steve, Helen, Carol, Brad, Kerry and ALL my other TNBC friends,
"This is a quote from one of my prior posts" ([I had a muga scan to check my heart before any treatments started and another one after the adriamician treatments ended. So they knew my heart was strong enough.]) The main reason I was told for getting the first mugs scan was that "adriamician" can damage the heart. The reason for the second muga scan was to make sure my heart had sustained no damage from the adriamician. The clinical trial I was in COULD have dictated some of these steps, but what I was trying to say is that "the oncologist knew that my heart was still strong" before I began taxol and stated that fact to me. I also was older (65) at the time of treatment, with an extensive family history of atrial fib. You know; sometimes we "pick those nits" to death. As you will notice in my signature, I did NOT have any radiation. I have questioned my oncologist several times about that and I accept it as truth when he says, {Lillian, In "your particular situation" (mastectomy and miniscule involvement in 1 lymph node) it was not necessary.} Kerry and Brad: You are in my prayers for a positive experience tomorrow with the taxol. Let us know how thing go for you. We all care and are sending you "hugs" "warm fuzzies" and "peace of mind". Love in Christ, Lillie ------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
Posted By: trip2
Date Posted: Feb 05 2010 at 3:45am
|
Lillie,
You do make sense, thanks for your support to others in need, we so appreciate your kindness,  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Kerry OK
Date Posted: Feb 06 2010 at 12:47am
|
Friends,
We had a very good day. We could not of asked for better care. We know we will face many difficult bumps in our journey, but today was definitely good. I was so proud of Kerry, she was so brave. I really could not believe it. We had to see a financial advisor before treatment, they always want the money first. She told me that I was the one that looked uptight and scared. She was right. It is amazing how much I have learned about my wife that I did not know. I always thought I was the strong one, but she proved me wrong! I believe the support and prayers from family and friends made the difference. This includes the family and friends on this forum. We have not met you personally, yet, that is how we feel.
The only side effect so far is Kerry is wide awake and going strong. She has been working on a cancer policy that we have to file ourselves. It is a pain and has not helped much so far. The next treatment
will be 2/12/10.
Thanks to all
Brad
------------- DX 11/11/09, IDC, <.5cm, 0-2 Nodes, Stage I, Grade 3 TNBC, Lumpectomy 11/27/09, Age 53 Treatment begins 2/5/10, 12 wkly doses Taxol, 4 doses every 2 wks of A C Then 6 wks Rads |
Posted By: Lillie
Date Posted: Feb 06 2010 at 10:52am
|
Oh Brad and Kerry,
What wonderful news.... the unknown is scary, but when the time comes we seem to rise to the occasion. Love In Christ, Lillie ------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
Posted By: mrsmurphy
Date Posted: Feb 07 2010 at 1:10pm
|
thanks for the info, even though its after the fact for me... but someone has to be in that 2-4%, right? I did 4 AC and 4 Taxol, had extreme bone pain, but I was reassured over and over it was from the Neulasta shots I took with the chemo. Who knows now? I still have some "achy bones" and slight early arthritis, but would rather that than not have done the treatments. God Bless, Mrs. Murphy ------------- 33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July! |
Posted By: mrsmurphy
Date Posted: Feb 07 2010 at 1:12pm
|
Oh, also, my heart was tested extensively to see if it would tolerate the amount of chemo given, they actually were very thorough, I hope this has been standard for everyone else!
------------- 33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July! |
Posted By: Kerry OK
Date Posted: Feb 07 2010 at 3:16pm
|
mrsmurphy
That is exactly what we thought about the 2-4% group. Our oncologist said Kerry won't take the Neulasta shot until the last 12 week cycle. The only side effect we have noticed, so far, is her face is very red. She has surgery Monday to put in the port. Did you take glutamine supplements? Her joints had been achy before treatment but feels better now.
Thanks
Brad ------------- DX 11/11/09, IDC, <.5cm, 0-2 Nodes, Stage I, Grade 3 TNBC, Lumpectomy 11/27/09, Age 53 Treatment begins 2/5/10, 12 wkly doses Taxol, 4 doses every 2 wks of A C Then 6 wks Rads |
Posted By: Lillie
Date Posted: Feb 07 2010 at 3:37pm
|
Hello Kerry and Brad,
Sounds like things are moving right along. I pray you have a very positive experience with your port installment and the use of it. I also had the red face when I took taxol. It was referred to as "the chemo glow". When the taxol treatments ended my face lost it's glow. It really wasn't a problem because I normally used some cheek blush anyway, but during taxol I didn't need any extra blush. Just sharing another side effects that is not often mentioned. Love in Christ, Lillie ------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
Posted By: Guests
Date Posted: Feb 08 2010 at 11:40am
| Hi Brad, no, they did not give me any glutamine supplements, but they did give me B6 for the neuropothy (tingling in feet and hands), and that actually worked. I do now remember I had some face flush, but not much, and I did lose ALL my hair, eyebrows and all my eye lashes too. Luckily, they were the first to come back, and fast! |
Posted By: mrsmurphy
Date Posted: Feb 08 2010 at 12:17pm
|
Hi Again Brad, I also had the porta-cath surgery, one day, in and out, tell her no worries! Mine is in my arm, most are in the chest. It makes things sooo much easier than an IV!
------------- 33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July! |
Posted By: Scott
Date Posted: Feb 08 2010 at 10:06pm
|
Mrsmurphy, how much and how often did you take the B6...it is OTC isn't it?
Thanks, Scott
|
Posted By: mrsmurphy
Date Posted: Feb 09 2010 at 11:17am
|
Hi Scott, yes its OTC, but the pharmacy gave it to me, many carry it, it is Nature's Made and my Dr prescribed 2 tabs (50 mg each) once a day. It worked for me! And now I barely have any more numbness or tingling. Also, be on top of anemia, I was also prescribed iron, but with that came constipation and if you wife had a c-section (which I also did) then get the colace too. I know, it's almost too much! I also posted on another one of the form topics (about pain) the need to get enough protein as they are the building blocks for your cells. I really believe this all veggie diet can make you weaker and not build your cells strong enough. You can do this organically, I do organic hard boiled eggs, organic chicken and turkey, that kind of stuff. But you know, with the Taxol, all she can eat is all she can eat and dont worry too much about it until her appetite is back. God bless! Mrs. Murphy goodness-I REALLY hope I did not get Scott and Steve mixed up, chemo brain and S names! If I did, please pass the info to WC!! LOL! ------------- 33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July! |
Posted By: Momof2NJ
Date Posted: Nov 02 2010 at 7:15pm
|
I know this is an old archived post, but I did Cytoxan and Taxotere during my first treatment in 2008. I did four rounds. First round went off without a hitch. The second one, I went into full anaphylaxis...started with burning pain in my lower back, couldn't breathe, I turned a "grayish" color, got immediately nauseous, blood pressure crashed and I blacked out. Woke up a few mins later after they pushed more benadryl and steroids, got stable and slowed the drip. Third treatment, I was premedicated and I got a slight reaction, but no where near as bad. By the 4th and last, we had the premed routine down and everything went fine.
I just started AC x 4 on 11/1/10 for a recurrence and will follow with Taxol x 12. Given my past reaction, I'm kinda freaked. We will change to Abraxane if something happens.
Prior to my taxotere the doc went thru an entire list of allergens and I answered appropriately. One thing they NEVER asked if I was allergic to was bee stings. I am severely allergic to bees and carry an Epi-Pen. Turns out that was likely the culprit in the taxotere reaction although the Taxol may not have the same effect.
We shall see.
blessings to all,
mary ellen ------------- 2008 BRCA 1+ dx stg 1,gr 3 IDC triple neg. BM w/ recon. CT x 4. Prophy TAH 2007. Recurrence 9/13/10. 10/5/10 tumor excised. ACx4, Taxol x3, abraxane x 9. 38 rads. 7/11 NED!!! |
Posted By: SagePatientAdvocates
Date Posted: Dec 24 2010 at 9:21am
|
Thanks for sharing, Mary Ellen.. I realized when I wrote this post over a year ago that a severe reaction to TAXOL is a rare occurrence. Nevertheless, I feel the message is still important and as you indicate it is important that we become advocates for ourselves and try to cover all the bases, as best we can. It can be a stressful, but necessary (at times), task to do so. I hope all goes well for you... you and all here are in my prayers, 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: overwhelmed
Date Posted: Dec 24 2010 at 10:52am
|
I had six treatments of Taxotere with no reaction and just the usual side effects. After the forth treatmen, I started to have foot pain that resolved itself at some point during the cycle. After I had completed chemo, that pain got worse and it continues today. I ache all over, and now that radiation is done I have some tingling in my left hand (same side as mastectomy).
I am glad I didn't experience the serious reactions that, although rare, can happen. I also think the Taxols are important drugs for treating TNBC, and am thankful I was able to take it in every cycle. But, it is a potent drug, and I would imagine that not everyone gets the long term side effects (which I blame on Taxotere, but maybe the Cytoxin contributed).
Thanks, Steve, for the warning and thanks too for letting us know that the aches and pains are normal. Any ache and pain is scary these days, but mine is all over and not just in one particular spot. I just feel much older right now than I am. But, it will get better.
Lori ------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2- |
Posted By: SagePatientAdvocates
Date Posted: Apr 23 2011 at 8:10am
|
bumping up for braveheart and any others that may have severe reactions to TAXOL. 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: Guests
Date Posted: Jul 05 2011 at 3:01am
| Good post |