Weekly Taxol group
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I didn't feel very good in the beginning. I had nasty diarrhea, aches and pains, profound fatigue. My chemo nurse said after awhile my system would adjust to the chemo. I think that's true and I also figured out how to manage each of the SE's. One at a time. But in the beginning I could completely fall apart emotionally.
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Hi ladies. I am 3 weeks PFC and I am getting my energy back and I have taste buds again. I lost them completely at taxol #6 or #7. It seemed as though my SEs had a cumulative effect. I was doing really good for the first 5 or 6 taxol. My fingers started to go numb right in the middle and my big toe went numb then too. Taxol was WAY easier than AC and more predictable. There were days when I thought this crap would never end. I hit a low point. Then I kept my eye on the prize. I knew I was done at 12. I just kept counting down to the last one... You can do this... I have learned to sleep and rest when I am tired, take advantage of the energy when I had some and not listen to the idiots who thought that I should feel great 3 days after my last TX.
My intention was to write a note to encourage you to keep going and dont get discouraged... So, keep fighting, keep listening to your body, keep accepting the help that is offered to you and know this will get better. You will get to the finish line!!
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Thank you! I'm finding the Taxol much worse than the AC ever was. Part of it is that the AC took away my fibromyalgia pain. With the Taxol, it has all returned... at what feels to be twice as bad. I can't imagine eight more weeks of this... and pray that once I'm done, the Herceptin alone will be easier.
Thank you all for your words of encouragement. I feel that I was blind-sided by the emotions that have hit me. Physically, the pain and bowel issues are terrible... but, I figure I'll feel better in time for one good day prior to the next treatment -- so thinking positive thoughts for today and tomorrow (Thursday is #3).
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TMI question.... have any of you ladies on weekly Taxol experienced bleeding with intercourse? We use Astroglide... any other recommendations?
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I did and still do sometimes. We have used extra virgin coconut oil since chemo. I haven't had bleeding in awhile, but sometimes a burning sensation, still.
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6cats~~Here's the BCO thread for help with intercourse. I hope it helps.
Blessings
Paula
http://community.breastcancer.org/forum/8/topic/776318?page=22#idx_6520 -
Hi ladies
Question about extremely bad hurting feet. I am 1 week PFC, I have gone back to work to make extra money before my lumpectomy/ALND on July 30th. I work in retail and standing/walking all day long, by the end of my shift my feet hurt so bad and are so numb/tingly- I limp to my car in tears after holding it in for 8 hrs. Has anyone else had this much pain? not sure if it's the neuropathy/not working for last 6mo during chemo/15extra pounds gained or combo of all. I am going to talk to bosses to see if 6hrs can be my max shift...seems to be my breaking point. Any suggestions for pain? I soak feet in epsom salt after every shift and take advil...RO didn't have any advice just said they should heal very slowly and be patient. I just have to hang in there a few more weeks before surgery...I guess I'm just venting, it's sometimes hard to accept the new normal and how it changes your life. I have also been taking b6 and glutamine, doesn't seem to have much effect.0 -
Oh Michelle my feet are still messed up after almost 7 months. I have the neurapathy from taxol. At least the restless leg thing resolved. They don't hurt per say but I don't like my feet touched. At first I could not handle my bedsheets even touching them. LOL
I hope it gets better for you. Maybe reduced hours is a good idea. I used to work retail and oh my feet were aching. Congratulations on end of chemo.
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Thank you Mareluna. I hope it gets better too!! I may have to get a desk job, if nothing else. So glad I don't have the restless leg thing on top of all this, sorry you had to deal with that. It's amazing what we are capable of handling and learn to live with. We are warriors!!
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I don't know if there is a separate thread for weight gain & Taxol... but I'm putting on a pound a day. No, I'm not pigging out.
I've never put on weight this fast! I worry because they are watching my heart due to echo changes after my adriamycin... and also the Herceptin I'm taking with the Taxol can cause heart issues.Any feedback? Ideas?
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Just my experience....my doctor believes the weight gain is a lot of fluid and will fall off pretty easily at the end of chemo. Another friend weighed daily during chemo and also noted gaining dramatically after infusions. I'm drinking steadily and moving, walking as much as I can stand it. I only weigh on chemo mornings and am holding steady though for sure I feel like I'm under the constant hunger influence of the cortisone.
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6cats-
I was active throughout my AC and Taxol treatments. I maintained throughout my AC which did throw me into chemo-induced menopause. (I have remained there - but since I did not have a hint of menopausal symptoms and my estradiol levels were decidedly totally pre-menopausal - I know I could come out of it. Other women have.)
I was running 25-30 miles a week through 12 weekly Taxol and the scale kept climbing. Since the steroid was only pre-infusion, my oncologist did not believe it was part of the cause. Still she allowed me to reduce the steroid the last two weeks. She DID believe that the chemo pause was a big factor. I was definitely holding on to water also. I firmly believe that my body responded to Taxol with weight gain.
I immediately started to lose the weight the week after the final infusion. It did not just drop off in 12 weeks - but I did not have to up my exercise or change my diet those first weeks to realize weight loss.
We are all so different. I know that it was a combo of factors but I know without a shadow of a doubt that I did not eat myself into the weight gain.
I was 48 when I started chemo. I'm 12 mos and 3 days post final chemo.0 -
6cats~~I lost 10 lbs the first 4 weeks post Taxol without any changes at all in diet or exercise. It will come off. I noticed a good bit of swelling in my feet & ankle during the last few Taxol. That seems to be gone, and I'm getting stronger everyday.
Paula0 -
jacee
i had and have numbness on side of face, up nose, and into my forehead. I too had a clear brain scan ( I had abraxene, for BC and had 18 taxol treatments in 2003-2005 for Ovarian cancer) I cannot do taxol based any more, neuropathy so bad. I have stage 4 BC now mets to the liver, but I am so glad they have other things that I can use-- Xeloda right now, and finally got se's under control. Do you still have facial numbness.
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Bestock ... No, my numbness went away, thankfully. The neuropathy in my toes is the only s/e that I have left from taxol, that I know of. Now just dealing with Femara and all it entails. That's anther thread:).
So glad to hear you have found another option that wors for you and is tolerable. We all endure so much! Best wishes to you.0 -
Thank you all for your encouragement on the weight gain!! I guess I should be thankful that I'm not losing so much people are worried about me! I do think most of it is water-weight... so most of it should come off easily (sometime
).Although I've only received three out of the 12 Taxol doses, I'm finding Taxol much worse than the A/C. Body pain is close to debilitating. I'll be so thankful when my heart questions are resolved... Somehow, although the heart is one of the major side-effects of the Adriamycin, I didn't expect the heart to be one of MY side-effects! So my normal anxiety is much worse than it should be.
I am so thankful that there is a group of folks who understands the ups and downs of this journey. Thank you for being here!
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Just out of curiosity, weekly taxol ladies, do you know how many mg's your dose is? My weekly Taxol is 80 mg and I'm having no real issues....bad immunity and I catch everything but no serious SE's. Have I just gotten unbelievably lucky? EC was for sure no picnic....
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Mine is 80mg/sq meter (150mg IV) ... I was really surprised when I started having SEs... everyone said Taxol was a walk in the park compared to the A/C... but the A/C was a walk in the park for me... mouth issues & moderate fatigue were my only real SE's with A/C. The diarrhea i experienced was attributed to IBS.
My MO keeps telling me I'm an "experimental group of one". I guess the fact I'm having such issues is proof of that. I think on the boards, sometimes you see the extremes. I try to remember that what someone else experiences, does not mean that I will experience the same issue. I am thankful though, to know about possible SE's -- at least that way it affirms my symptoms, and helps me not think its "all in my head"!
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I'm not sure what my mgs. are. But my MO said it is based on weight/height/bmi (she said that is computed to determine surface area of the skin), at least that's how mine is done. Weird huh? I asked because I too thought I was taking Taxol too easily compared to others and thought I might not be getting a big enough dosage since I'm very over-weight. She reassured me my dose was perfect for my size. I'm just lucky that my se's are better than most..just fatigue and constipation. Okay the constipation sucks big time. So ask how they determined the amount you're getting.
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6cats can we be experimental group of 2? I found ac much easier than this taxol crap! My body is more sore than I thought possible. Could only work half day yesterday and took off today. MO called in script for tramedol. Hoping that will work so I can sleep tonight.
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lpc, I'd love to be an experimental group of two!!! Although I'd never wish the pain on anyone else, it is good to know that someone else is having the trouble I am. I hope the tramadol works for you! Sleep well tonight!
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6cats - I also found taxol much worse than AC. Granted the nausea wasn't so bad, but the body aches and the pain were yukky. So glad I only had to have 4 dose dense treatments. I did get the final two reduced somewhat because of mild neuropathy symptoms - my MO did not want me get neuropathy because she realized that my quality of life was very important to me. Hang in there - it will be over one day and then it will seem like one bad dream.
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I've just started in with mild neuropathy in my pinkies and ring fingers... keep thinking my toes are getting it too, but then it goes away. But today, my muscle pain is severe... I feel like most muscles are totally tense and a good muscle relaxant would help.
I still have nine doses to go (tomorrow is #4). I'm concerned about making it through due to the pain levels... but, as with all things, one day at a time...
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6cats, are you taking anything to ward off the neuropathy? many of us had success with vitamin B6 and glutamine powder. There are various regimes, but at the suggestion of my chemo nurses I took 100mg of B6 daily, and 30 grams of glutamine powder on the day of chemo and the subsequent 3 days. The 30 grams was divided into 15 grams morning and night. 15 grams is about a heaping tablespoon of the powder, and you mix it in a liquid of your choice and drink it down. If you're still having tingling on the 4th day after chemo, you could continue the glutamine. For me, the 4 days each week did the trick. The chemo nurse told me to continue on with the glutamine for at least 3 weeks after finishing chemo. I ran out of the powder and didn't want to buy any more, wasn't having symptoms, and then wouldn't you know about 3 weeks PFC I got a numb big toe. It lasted a good two months, but it's fine now.
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Also, 6cats, how fast are they running your Herceptin? I've heard from others on these boards that they got very achy when Herceptin was run too fast, and were fine when the drip was slowed down. I have them run mine over an hour; some people go with an hour and a half. You might ask them to slow it down and see if that helps the aches at all.
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I just had my first chemo treatment (taxol) on July 15. My fibromyalgia pain is very magnified on day 2 and 3. Any suggestions for relief?
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Hello, all,
As someone who suffers from permanent neuropathy due to Taxol, I wish I'd pushed my team harder for possible treatments like these to ward off this particular side effect. It affects a relatively small percentage of patients, but when it does, the consequence are significant. Do whatever you can, within reason, to address numbness and tingling if it happens to you during treatment.
Take the long view! You'll be around for many years after all this, and you want them to be the best years possible.
Good health and happiness to you all.
Ann
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Ptwheeler -- I too have fibromyalgia, and have found that the Taxol (and/or Herceptin) have greatly magnified my fibro symptoms. I have either been wiped out by fatigue (Day 2 & 3) or incapacitated by pain (and/or fatigue) (Day 3-6). I have a relatively good day on the day of chemo and on the afternoon prior to my next tx.
I don't have great advice other than to talk firmly & strongly to your MO. Make sure you walk out of your appointment with appropriate pain medication -- my doc uses hydrocodone. Today her nurse said to take it on a schedule rather than let my pain get out of control. If your pain responds to naproxin, I'd recommend starting with that and moving to something stronger when necessary. The other things that have helped me keep pain at a dull roar (versus fetal position and tears), is light yoga, and hot showers. I often do range of motion in the shower to help loosen up the tighter muscles. This last treatment (#3) was much worse for me than the first two.
From a fatigue perspective, I'd recommend naps or just laying down for 20 minutes. Laying down in a darkened room for a small amount of time got me through an all-day seminar I had to go to on Day 3.
Finally, be safe. I've found my attention when driving hasn't been great... even when off the pain meds. So be careful and have someone drive you as much as possible. This also will help your pain, as you don't need to be as tense (alert) when you are going somewhere. I actually had a mild fender-bender on Day 3 after my first Taxol. Now, I try not to drive when possible.
There is a discussion board for BC and Fibromyalgia -- although its not super active, it might be helpful -- and if we both post, it may help it become more active -- here is the link http://community.breastcancer.org/forum/142/topic/803871
Just finished my Taxol #4 (I'm a third of the way done... Yippee!!). I have my Aleve in me... and just took pain meds. The other thing I'm going to try is to stay on Claritin. They give me claritin prior to tx -- so if it helps?!?! I will be excited.
Any other fibro ladies in this group? {{{{ gentle hugs }}}}
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PatinMN -- I asked the chemo nurse today about running Herceptin slower... she said she had never heard of that! And she pretty much ignored the idea. Any research articles you know of would help. I would happily take supplements, but my MO is totally against them... so I will start taking them when I finish my chemo.
Until then... does anyone know of the top three food sources of Vitamin B6 and also Glutamin? I am planning to include them in each meal as soon as I find out what common foods have the most bang for their volume (I don't want to have to eat five cups of carrots, etc. each day). I'm looking for foods you can get in a small town grocery store, not foods that are only available in a health food store or box store.
My other question is, does anyone know if there are exercises one can do that will help with peripheral neuropathy?
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6cats, your nurse should do this the way YOU want unless it affects the way the meds work. She is just being difficult. Slowing down the flow just takes longer and if you're willing to do it why can't she. Talk to your MO and tell him/her you'd like the Herceptin to run slower...insist if you have to. If the MO tells the nurse to deliver it slower than she has to. I'd tell the nurse that she doesn't have to endure the after effects of the meds and there's nothing wrong with trying something else if it MIGHT may it better. You'll never know if you don't try. I swear some doctors and nurses must take a class in just being difficult and insensitive to patients.
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