Weekly Taxol group
Comments
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Yeah I got Neupogen shots while I was on Taxol.
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@molly1976 thank you for sharing your experience, I had my first infusion last Monday and I was so nervous about keeping my arm perfectly still. I still have one more to go without a port, then I may take my computer like the pros rather than being lumped over on Benadryl.@6doggies thank you, my first chemo went well, I kept expecting some kind of reaction but I didn't feel anything, except the Benadryl which knocked me out, and they only gave me half a dose. I did get a weird brain jump feeling as I was rocking back and forth in the chair, so I stopped the rocking and I didn't happen again. I have felt well enough to work four days a week. I am almost a bit worried because I have not had any bad reactions or feelings, could this mean that the Taxol is not working or not aggressive enough? Should I ask for a higher dose? I keep feeling my tumor every few hours to see if its shrinking and second guessing myself about doing chemo first, I think I'm going to drive myself crazy. Ahh.
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crs008 - I too have been lucky to have very mild symptoms from the Taxol (I have had 6 of 12 so far) - and actually found myself also wondering about whether it was working, but found plenty of information from people who were using the taxol to shrink tumors who had mild side effects but saw their tumors shrink and I could find no information that mild side effects equated to fewer symptoms. (My taxol is post surgery - so there is no way to know if it is doing anything, since it is hunting down any cancer cells that might have escaped into the body rather than going against a still existing tumor.) This weekend, for the first time, I am feeling off - my infusions are Tuesday and Friday afternoon and Saturday I definitely did not feel right (mild nausea, tired and a little disoriented). Fridays have been my low day for most of my treatment - but this week was definitely the worst.
The worst symptom I had so far was a few weeks of bad constipation - and that, I think, was probably set off by taking one dose of an anti-nausea drug a few weeks into the taxol. (The nurses had insisted that I take the drug at the first sign of nausea - but the drug made me feel wore than the nausea and, when I mentioned it plus the constipation to the oncologist, he said "oh yeah, that can cause really bad constipation"). So now I just treat any nausea with the same tools I used when I was pregnant (ginger, small bites of bland food and patience.)
I also had a little neuropathy in the first weeks - which I hit with really heavy creams on my feet, and L-Glutamine and B6 at the recommendation of the oncologist. That has largely gone away (not sure if it is the supplements or just my body adjusting to the taxol.
I am taking each day as it comes - I am very thankful that my body is tolerating the drug and, although I know the side effects may well get worse over the next six weeks, each week I make it through is one week closer to the end. My heart goes out to the folks who are having bad symptoms - but there is definitely a wide range or responses to this drug. My primary oncologist told me when she recommended the taxol that it often has only mild side effects - so, that is within the normal range of responses.
Even my hair is holding out fairly well - I got it cut after my third infusion (not wanting to loose hunks of long hair). I have been shedding heavily for the last several weeks (particularly the first few days after each infusion) but my head is still covered (if thin enough that I try to wear a hat if I going to spend any time in the sun.) Without the really short haircut it would look horrible, but the short cut still looks good. (I realize that this is a major exception as most people loose their hair with taxol - but, as with the other symptoms, the degree varies.)
rleepac - I, too, have the runny nose with a bit of blood although I have only had one full-scale bloody nose since I started chemo. (I am starting to get seasonal allergies now - but can clearly distinguish between the Taxol runny nose, which is not accompanied by a need to sneeze, and the allergies which do have my sneezing.) I have found that if I dab vitamin E oil up my nostrils, it really helps keep the bleeding down. (Not an official treatment of any sort, but it has definitely helped.)0 -
Jen: Thanks for your post. I start TAxol next week and I am terrified. I guess it's just fear of the unknown and seeing what can happen.
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crs003, I'm glad everything went well, when I had my first AC, I was afraid that my head was going to explode, my mom wanted to come with us and I told her no because I wasn't sure what was going to happen, so when I moved on to Taxol, I knew my head wasn't going to explode, but was still worried because of it being a different type. LOL I have thought the same thing about Taxol several times, if I don't have any bad reactions, is it working. I had to have my dose lowered because I was having issues with my feet and was worried that it wouldn't do what it is supposed to do but my Oncologist reassured me that it was. I had my 7th last Friday, my white count was almost too low for them to give it to me, but thank God they did, I know that probably sounds weird, but I don' t want to miss any Chemo, I want to keep on the path and move on. I think that all of us can second guess and drive ourselves crazy about any decision that we have made along the way, we make decisions on the information that we have at the time we need to trust ourselves more.
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Hi,
I will be starting weekly Taxol from this Saturday. I am really concerned about peripheral neuropathy. I did some research and found that Cryotherapy and Glutamine seem to help. Found the following clinical trials which are using these to find out more
Glutamine
https://clinicaltrials.gov/show/NCT00195013
Cryotherapy
https://clinicaltrials.gov/ct2/show/NCT02230319
Does anyone has any experience using Glutamine or Cryotherapy or anything else?
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Hi arunbala, I am on weekly Taxol - I've had 4 so far - I started taking Glutamine supplements when I began Taxol and I have had no neuropathy issues yet. Not sure if it is due to the supplements but I plan to continue taking them.
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I've been taking glutamine since the beginning, 10g mixed in a small glass of water 3x a day. I also take a B-6 supplement. My MO seemed sort of skeptical that it was likely to make a difference, but I feel like it's a really easy thing to do and if it might help, why not? This is the glutamine I bought - be sure to get the powder, not pills, as you'd need to take handfuls of pills to get the dosage high enough. http://www.amazon.com/gp/product/B00E7TMONG/
I have not done cryotherapy mainly because it seems really unpleasant, and because it works by keeping the chemo drugs from reaching your fingers and toes. I want the Taxol to be everywhere in my body!
I have #10 of 12 this week and have not had any significant neuropathy. I have very mild feelings off and on like a couple of fingertips might have slightly reduced sensation - they feel sort of weird, but not numb. This has been going on since week 2 and it hasn't gotten any worse. Sometimes my feet are achy, like I've spent a long day walking, and sometimes my hands feel sort of tight - but again, that comes and goes and for some reason I didn't have any of those symptoms at all this week. My MO does not seem concerned about any of this so far. In 2.5 weeks I will be DONE and I'm really hoping my fingers and toes hang in there until the end!
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I did cryotherapy. I'm not sure if it worked as I still got some neuropathy. It wasn't painful like some people have reported just more numb. It was worth it though as the Taxol did the trick. My tumor shrank with AC but Taxol finished it off and gave me a complete pathological response.
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Trvler - I was really scared too, before I started - a fear of the unknown and knowing that, even though Taxol is one of the better tolerated chemo drugs, I and knew that many people have bad side effects. (I also think people are more likely to post when they have problems). My advice is just to take each day and week as it comes - be prepared to give yourself a break when you need it, and count your blessings if things go well. I think the glutamine is helping me with the neuropathy - I was definitely getting it in week 2, and I have not had any real problems since I started taking it. Also, slather your feet with something like bag balm if you start having problems. I take advantage of the days I feel good to get what I can done (both for work and family), but have no hesitation in taking a nap or letting other people deal with dinner when I don't feel up to it. Definitely keep up on exercise - I stopped running when the neuropathy started (also partially because of fatigue - I am not tired all the time, but an amount of exercise that would have been easier before I started can really knock me out.) I have been trying to do 30 minutes - but easier. I will do a walk (and not worry about pushing the pace), or a slow swim or, if I use my eliptical, I do it in a series of 5-8 minute workouts rather than 30 minutes in a row.0
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Before I started Taxol/Herceptin, my MO mentioned that there is thinking that L-Glutamine and Vitamin B6 might help prevent neuropathy. He was not convinced ti worked, but it was enough for me that he mentioned it at all. I read up on these boards that many women were using it. I have been taking it religiously since the beginning of my chemo and so far I don't have major problems with neuropathy. I do get slight tingling/burning in my fingers from time to time, but it always resolves. No issues with feet at all. I've had 10 treatments so far, today going in for the 11th and I'm hoping I will escape it all with no neuropathy.
I have been having blurry vision though, and I've been told that this could be a form of neuropathy. I'm hoping this is just temporary.
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Oh, and I did not try cryotherapy - in fact, I was told to make sure not to get my fingers and toes cold, so this is so very opposite. Still don't understand why such difference in advice.
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Tweetybird2…I too am early stage BC HER2+ node negative. I'm only doing 12 weeks weekly Herceptin + taxol (may stop @ week 9), then rest for 2-3 weeks before going for 4 weeks radiation therapy.BBwithBC45 - Ice my fingers and feet religiously at every chemo (scientifically proven to prevent neuropathy- go to pubmed section of the National Library of Medicine and read up on it), and painted my nails/toes black (paclitaxel supposedly cause nails to be sensitive to light. read that by painting it black, would preventing blackening and cracking).
So far so good except that hair started falling yesterday during shower, and after Chemo#3. So got a crew cut today. Everyone said I look like Sinead O Connor. LOL. Benedryll doesn't bother me, but has asked for reduced dosage on it, as well as on dexamethasone (from 20 to 16, then to 12 then 8.
Anyone not icing yet experiencing neuropathy may wish to consider buying this acupressure hand/foot massager from Amazon, at this link. http://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=wooden%20foot%20massager&sprefix=wooden+foot+m%2Caps
According to Traditional Chinese Medicine (TCM), massaging your hands by rolling it up and down, back and forth for 20-30 mins twice a day can help stimulate the nerves in your fingers/hands/feet. Good luck!
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Thank you everyone for sharing these experiences. I am starting weekly Taxol tomorrow, along with Herceptin every 3 weeks. It is so frightening not knowing what your own individual reaction will be, but it helps to hear that most people are able to tolerate it well.
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Hello Ladies,
I am about to start my Taxol treatment from Saturday. I was considering taking Glutamin 30g/day for 4 days after 24 hours of infusion as per the following clinical trial protocol
https://clinicaltrials.gov/ct2/show/NCT00195013
I had posted this question earlier and it seems others are also taking Glutamine and may have had varying degrees of success. However, I found a study which suggests that glutamine is a major source of energy for cancer cells. However, I could not find out any article suggesting any counter indication of taking glutamine if you have cancer.
Any suggestions/comments are much appreciated.
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I don't know specifically about glutamine, but I asked a close friend who is a Registered Dietician and works with pharmaceutical companies in development of vitamins and supplement (25 year experience). His advice was take nothing other than Vitamin D during chemo. Many supplements counteract chemo, and yes can supply energy to cancer cells. After chemo is completed, it's another story- that is the time to rebuild. My MO agreed and told me only to take Vitamin D for now...I have confidence in their combined extensive experience and am feeding my body well with good foods and avoiding supplements for now.
Hope you're feeling well...
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I started my first of 12 weekly doses of Taxol a couple days ago. So far, so good, but I tolerated the first 4 rounds of AC very, very well (only genuine complaint was fatigue and it shrunk my 3cm to pea-sized or less so worth it!) so I was hopeful about starting taxol. I'm a writer so with work...In between chemo brain, fatigue, and seasonal allergies from Hades for the past 2-3 weeks, not much work going on. I'm cutting myself a lot of slack about work these days, though. I need to be mentally sharp to write at a professional level and if I can't do it, I can't do it. I'm not going to wreck my author branding by setting ugly books on the market, no thanks. I worked too hard to build my rep to ruin it now.
I had some major bad news at my first taxol spa day. My MO and BS had been arguing, with my MO recommending lumpectomy after the AC treatments worked so fabulously well and my BS pushing hard for mastectomy regardless. Early on, before all the tests were in during diagnosis & staging, BS was convinced mine was an early stage IBC. Then, after all the test were in, I met with the MO who said no, it wasn't ibc. Now, after talking to the BS, my MO says while she isn't prepared to say this was definitely early stage IBC, she isn't ruling it out anymore either so I'm back on the ibc mandatory mastectomy bandwagon.
I can't begin to tell you how much I didn't want this to be ibc. I wanted to believe I could keep the girls, have a no-fuss lumpectomy (I've had one and tolerated it fine when I was younger), and my life could get back to normal after surgery & rads. I wanted so badly to have, for lack of a better word, "normal" BC like most women. I feel like the rug has been yanked from under me again, right at the moment I thought things might turn out okay. Serious bummer mode here. I'm having the "what if I don't make it?" thoughts again because, realistically, statistically, with ibc, most of us don't. Less than 50% at 5 years is the last numbers I looked at. My youngest son graduates high school in 5 years. Flip a coin -- heads I'm gone, tails I'm here to see him in cap & gown. I keep trying to coach myself up. As fast as ibc is, we caught mine early. That has to count for something. The MO says I have a fair shot at a complete pathological response (my best chance at beating this) and I'm PR pos (most ibcs are triple negatives, if I remember right). It's just really hard. I've thought about meeting with my old pastor to talk about it, but...We're friends. Good friends. He used to be my boss. Nobody even knows what stage I am, much less about the ibc, because I just couldn't take people knowing my odds, even at stage 3b. I can't lay this on him. Maybe I should ask to be referred to a therapist at the cancer center, I don't know. Help me process this, y'know? Anybody done that?
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Princess: Wow, I am sooo sorry you have to deal with all of that. I definitely think you should talk to a therapist of some sort. I think they have them that specialize in dealing with cancer which I would strongly suggest. I think many of us know that unless you are experienced in this arena, you just can't know what to say or how to help. (I use my therapist as an example who tells me things like 'sugar FEEDs cancer' and " you should visualize your cells getting the chemo. I just don't buy into all that new agey stuff so it isn't a good match for me.
Maybe ask your MO of for a referral? Do you have social worker?
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I met with the social worker at the cancer center early on, yes. They ask about depression/anxiety during intake for spa days, which I'm now on weekly so if I ask for a referral, I'm sure I'll get one & rapidly. I'm not sure I'm depressed, though, exactly. Stunned is what I am. I came to terms with ibc once, though, early on. Well, I got a start at that, anyway. I just have to get on top of it again. Try to.
Yeah, not a fan of visualizing. I'm a fan of being confident I am doing everything I can and that my body is fighting hard. I'm an aromatherapist so I'm not averse to some degree of Woo Woo, mind, and I've had good experiences with meditation too. It's just that the only people who know about my ibc or how risky my BC is, are my doctors, my husband, and just this morning, I told my brother (without mentioning odds). Might be good for me to talk to someone who isn't so emotionally invested in me, y'know? Where I don't have to watch what I say so I'm not tearing someone else's heart up.
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Princess, I saw the chaplin at my breast center during chemo and she helped me a lot. I am praying that God leads you to the right person. Love, Jean
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I'm not really in need of pastoral care, which is tetchy for me to start with since I'm a theological liberal in an area where liberal theology is about as rare as dragon feathers. But someone who's not invested emotionally in me, who isn't going to fall to pieces if I think through things that are not so pleasant for my nearest and dearest to contemplate...might be helpful. I dunno. Maybe, once I wrap my mind around it, I'll be fine on my own. I tend to be a very positive person, generally. It was just a shock after being told, categorically, that it was not ibc, only to find it that yeppers, it is. Feels like I lost the ground I thought I'd gained so far in treatment, when I know that's not true. Feels that way, though.
Btw, I'm mega impressed with taxol so far. My allergies are still rampaging, but otherwise, physically, I feel terrific. Yeah, I know, only my first of twelve, but my butt was dragging a lot more with AC.
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Karen and all...I had my first Taxol yesterday and I feel good. I joined my gym again and went right after Taxol treatment and again this morning. Granted I'm weak as I have ever been (cardio and weights) but I think it will really help me out all around. If there had been 5 AC treatments I really think I would have forgone the last one. I'm hoping that Taxol is not as cumulative as AC.
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I'm not ready for the gym, but if the pollen count wasn't so horrid, I'd be walking/hiking the trails around my house and enjoying LEAVES ON THESE TREES. Green! Oh, green, how I missed you...even though your appearance every spring is the work of the devil on my poor sinuses. Why I bought a house in the woods when my allergies slay me every spring is quite beyond my ken. Nutter, pure nutter, that's me.
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I get exactly what you mean about talking to someone who isn't emotionally involved. I also hate how much of my brain energy has to involve thinking about cancer. I sometimes wish people would stop asking me how I am. I am sure that makes sense to many of you.
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I absolutely hate the "how are you feeling" question, mostly because it's asked by people who surely don't want to know the real answer. Well, random coworker I barely know, let me tell you about my diarrhea and bloody nose. This experience is definitely going to change how I interact with people who are going through tough times in the future. "I'm thinking of you" is so much more welcome than quizzing me about the details.
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I hate the "how are you" question because everybody assumes I'm lying. Point blank, recently one friend said that. "I know you're lying." No, I'm not. Seriously. I'm keeping on top of side effects, have all along, so other than one epi-gastric episode, chemo brain, and pervasive fatigue, I've been good. I don't know which is worse, the ones who believe me & think I'm some kind of Super Woman (as opposed to Super Lucky!) or the ones who don't believe me & think I'm a big fat liar.
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Princess, I have to say that I get the super woman thing from everyone, especially my boyfriend, I'm like you, I'm super lucky and very blessed to have gotten to this point, Taxol #8 was today, with very little down time, I went to work everyday through AC and now Taxol. I get the sorry for you looks and believe it or not, the ladies were I work are absolutely horrid, not one has asked me how I am doing, not that I need them to, but we are all women, this could happen to any one of them, so you think that we have each others backs, but that just isn't the case. There are days when I would love to stay in bed and hide from having chemo brain, sore feet, a runny nose and watery eyes.
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Good Morning Ladies,I had my #8 Taxol yesterday, As I woke up at 3:00 AM this morning, thank you to the steroids, I was thinking about something that happened while seeing my MO yesterday. I mentioned to him that my hair was starting to grow back (he said congratulations) and I asked if that meant that Taxol wasn't working, he sat back and said that he can't say that it is or isn't, he hopes that it is but since I don't have a measureable disease he can't say that yes, it is working. He also said that my tumor was very small but I had 2 out of 5 positive microscopic nodes that is why I got Chemo, which I already knew. Now I'm freaking out because how can they tell if it does work or not?
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6: I wish I could answer your question. Special K is especially good with those types of questions.
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This is from this page (http://www.breastcancer.org/treatment/chemotherapy...):
- Remember that side effects have nothing to do with how well your treatment is working. Whether or not you have side effects, the chemotherapy is working to try to kill cancer cells in your body. And the medicine works best when you get the full amount of the recommended regimen on schedule.
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