Weekly Taxol group
Comments
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Hi guys- I can't believe I've forgotten to mention this before, but even though I was miserable on Taxol no matter what I did, one thing that definitely made things a little more tolerable was my ADHD medication. However, I have a true diagnosed case of ADHD and have taken medication for years, so LET ME BE CRYSTAL CLEAR: I AM NOT SUGGESTING ANYONE SELF-MEDICATE FROM THEIR CHILD'S ADHD MEDICATION!
I'm choosing to mention how much it helped me because:
1. I believe my regular ADHD medication gave me 4-5 "better" hours during the day than I otherwise would have had on Taxol, and if it worked for me, it might work for others.
2. I was surprised to find out some oncologists have begun prescribing very small doses of ADHD stimulants to their patients to manage chemo side effects (so I'm not the only one who noticed it helps chemo side effects!). I personally know 2 women who went home from their first chemos with prescriptions for 10mg of Ritalin, both at different cancer hospitals.
3. With a quick google search, I found quite a few seemingly reputable ongoing studies showing very small doses of these stimulants help chemo patients, especially with chemo brain. One in particular I saw is happening at MDA in Houston.
If you're struggling, it's worth asking your doctor. If he prescribes something and you don't like the way it makes you feel and/or you don't feel there's any benefit, the good news is ADHD meds are in and out of your body in only one day.
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Jean, I totally get emotional and almost depressed around day 4-6 (while on AC). I didn't even think about it being related to the decadron! How interesting. I get major food cravings as well. When I can't sleep in the middle of the night, my thoughts are all about what I will eat or drink the next day. Inevitably, nothing really appeals to me once it's in front of me, but the focus on food and drink is pretty obsessive. I thought I was watching too much Food Network, but perhaps that's not the only reason!
So nice that you have a great granddaughter on the way. It's great to have something so wonderful to look forward to, isn't it?
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Jean - ok, I'm crying while I type this! Yes, I have same SE, and WHY do we need reminders? Thank you for reminding me - gives me hope. I'm giving up on decorating house ( my arms are too heavy) and after an amble with Abby Airedale, a bath and nap are as far as I'm planning.
You all are my heroes - glad I don't have to do this alone.
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hi Linda hope you are doing well.
Nancy
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I just finished Taxol #6 of 12. Fatigue is a bear but I am trying to get as much rest as possible. However sleep does not combat the fatigue associated with Taxol for me at least. Resting does make me feel better. I still have absolutely no desire to eat or drink. I have a routine -- I have an alarm set every 2 hours to remind me to eat small meals. I keep a 32oz cup next to me to remind me to drink and I try to drink 3 of these a day. It is a routine I have to follow as my MO says I was loosing too much weight. My last two weigh I only lost 1 to 2 pounds. Total weight lose during chemo (AC and Taxol) has been 31 pounds. With AC I couldn't eat due to nausea, with Taxol MO says I have chemo anorexia. I decided not to take appetite stimulates as I don't want to add another drug to my now home pharmacy :-). Aches and pains, I am dealing with and taken pain meds to stay ahead of them. With this round seems like my muscles are sore.
Quick question: Has anyone experienced sores on their tongue while on Taxol? If so, how long did it last? Did you get a prescription from your MO to address the SE? Any suggestions on how to get ahead of this one is appreciated. The sore is starting to develop towards the back of my tongue. It doesn't feel too bad yet.
Good report, MO says my blood work looks great! Now if I could get my GI tract and fatigue to be "great".
Have a great weekend everyone.
(please overlook all typo's and grammar as chemo brain is at its best right now -- big smile).
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I had sores with AC and soreness in the gums with tax at the beginning. I used the same solution I had for AC which was called magic mouth. It's a cocktail of stuff from MO that pharmacy did. I know benedryln is in it. I also used salt water. Sorry I don't have more info.
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ladyb yes I did develop a sore on the side of my tongue. I upped the biotene mouthwash to 4 times a day. My oncology nurse also gave me a free sample of Mugard. I think both together got rid of the sore. Since upping the biotene I have not had any more sores.
BTW for whatever reason taxol #6 was the hardest for me. Have no idea why. I have done 9 now and even 7, 8 and 9 were better than 6 although after 8 I have developed some slight neuropathy.
Nancy
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LadyB ~ for my mouth sores, my MO prescribed Magic Mouthwash, Pharixia, and Lidocaine. I've had an ulcer near the tip of my tongue for the past week and I've been using the Pharixia as a rinse and then I apply the lidocaine directly to the sore area to numb it. Hope this helps!
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Thanks all, for the suggestions. I will up rinsing with the Biotene and have also called my MO to discuss Pharixia and/or getting refill on the magic mouthwash. I have not been as dilgent with the rinsing and mouthwash since finishing AC and looks like I need to get back into that routine.
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Hey Everyone! I have been looking over this board out of curiosity. I finish my A/C treatments this coming Thursday, get a couple weeks off and then start my weekly Taxol. I would love to know how it compared to A/C for those of you who did a similar protocol. I'm getting myself geared up for weekly treatments and am really not looking forward to it. Would specifically love to know if side effects were similar or different for you. Thanks!!!
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Hi knittingPT! Congrats on finishing AC! I've had both, though I had 12 weekly Taxol first, then I had 4 AC over 12 weeks (FAC actually, but pretty much the same thing). FIRST AND FOREMOST, please remember before you read through these Taxol postings that most women do pretty well with Taxol. I say this because a lot of us posting here are/were miserable on Taxol, so I don't want you to think it's the norm.
My biggest advice for you going into Taxol is to paint your nails black with a good protein base coat (and keep up with them through the 12 weeks- something about light hitting your nails during Taxol is very destructive to them), consider icing your finger and toe tips and hold ice in your mouth during the Taxol drip to keep your taste buds from turning on you. The ice in the mouth definitely works- I never had an issue with anything tasting bad. As for the black nail polish and icing fingers and toes- none of us are sure what or if they work, BUT many of us have been able to keep our nails healthy and if we've had neuropathy/numbness it's been later into the Taxol treatments.
I have friends that have breezed through Taxol with very few issues. Those of us with significant problems are in the minority! However, whatever issues you have, this is a great thread. Good luck!
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hi knittingPT - tomorrow I have my 10th weekly taxol. For me it hasn't been that bad. I do get some aches and pains. At this point I have some slight neuropathy, but it doesn't bother me. It started after #8 and did not get any worse after taxol #9. I have not had any nausea. I get tired at the end of the day and my eyes are super blurry around then. My blood counts are low but not enough to require neupogen shots yet. Fingers crossed my blood work can hold up for 3 more treatments.
I'd say overall taxol has been easier for me, but everyone is different. I wish you the best. I have taken l- glutamine throughout with my oncs ok.I have not had any nail discoloration at all. I didn't paint them either. Some women do as texasrose mentioned so you might consider it.
Nancy
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knitting, my first few taxols were worse....got dizzy...not sure if I have got used to it or it got better. I have painted the nails dark , not black, and iced...so far so good. I have got tired after taxol ten. I did nothing for the toes and one toe is turning dark in a corner. I did not ice my mouth and things have alwAys tasted fine. There has been no nausea or indigestion or mouth sores for me. No issues with blood either. In general, better than AC
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I took L-glutamine all through my 12 weeks and for two weeks after the last infusion and had no nail problems and very few neuropathy symptoms. But about two weeks after quitting the L-glut, I started developing some tingling, and purple spots on two nails. Boo. I have resumed the L-glut and the neuropathy is better, and my nails seem to have stabilized. Anyway, I am just posting to suggest that if you take L-glut, you may not want to quit too soon.
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thanks for the tip tabbygirl. I have been taking l- glutamine too and my neuropathy is very mild . It doesn't bother me.
I had taxol #10 today. My blood work fell (figures) and so for the next 3 days I have to do neupogen shots. Oh well. Gosh only 2 more to go. YAY. I also have cording under my arm. Thankfully it doesn't hurt .
Nancy
My MO said I breezed through Chemo lol
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Nancy, I developed cording, too. It pulled when I raised my arm high. My breast surgeon recommended a great physical therapist and she got rid of it
I still see her; she is working to keep my scar tissue loose on my chest. So don't despair if yours gets worse. 0 -
Tabbygirl my MO asked me if I wanted to do physical therapy - funny you brought it up too. (She's not really recommending it for the cording because it doesnt hurt) but because I have a few other pains. I am waiting to see if they go away once I finish taxol. I see my MO again at the end of January so if my aches and pains don't go away I just might take her up on the offer.
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Nancy, my PT also gives me a bit of massage for stiff neck and shoulder on the surgery side - she says it's all connected. I am loving it for the relaxation break I get
Great that your cording doesn't hurt. Strange thing, isn't it? Reminds me of a duck webfoot.
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oh weird tabbygirl - I just seem to have one chord or that's all we can feel it is odd and even stranger it didn't show up until now. I had surgery almost 6 months ago and only 3 lymph nodes removed. Wonder what other strange things will show up lol
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LadyB, it will take awhile for my feet to get better, but hoping. The node in my lung is unchanged and they do not think it is cancer.
Found out I am doing radiation. Daily for five weeks. After that am changing my Herceptin to every three weeks.
I found the taxol not as hard as the a/c, but the neuropathy, I could have done without.
mm
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5 more to go then find out if I get more surgery first or go right to radiation. I went out with hubby last evening to get some gift cards, gift bags and food at the diner. Came home and just crashed. Sometimes I just try to be normal for a while but then I pay for it.. Still waiting for great granddaughter to be born. We are all hoping it's before Christmas. Love, Jean
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Hi..my mom started Taxol treatments last week. Stage 4 with bone mets, dural mets, and spleen mets. First 2 days she felt great, days 3-5 she was pretty fatigued and loss of appetite. Day 6 was better. She has bilateral ankle swelling. Some localized aching. Also her blood counts dropped after 1st treatment. Oncologist wants to do 12 treatments but now is talking about getting through 4 which makes me nervous as I really want her to be able to get through her treatments. Similar stories?
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hi Angel....sounds similar to most of us! How bad is swelling? Nausea also
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For those of you finished with Taxol...how long did it take before your SEs subsided? I'll be 3 weeks PFC tomorrow, and I don't feel much better at all. I still have pretty substantial fatigue, swelling, aching nails, red and watery eyes, nausea off and on. The only thing that has stopped is my bloody nose. I guess I expected to feel a little better by now.
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hi All: Whining alert-#10 Taxol tomorrow. I have so sense of taste anymore-everything tastes flat. Have others had this? Didn't really happen until now, plus I have gained 10 pounds-ugh/I had lost weight before diagnosis and this just took away half of it. Neuropathy much worse. Knees down to toes and fingers. It it going away in the lower extremities but bad in the fingers and nails. Mouth sores are back and nose is stuffed and bleeding.
I know, I know-only 3 to go but I feel down. I don't even get two good days anymore between infusions.
I hope I didn't do this for nothing. how long does chemo work for? Sorry for whining-i know that I am not as bad as others but this has been going on since July and it's hard to be upbeat during the holiday season when you always have your eye on the nearest bathroom and you can't use your hands.
On the other hand I am grateful that I have had this board to read-you have no idea how much everyone here has helped-port decision, warnings re side effects, you name it. It has been a true blessing-thank you to everyone
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Hi April,
It took about 10 days PFC for my taste buds to come back, and my bloody nose finally stopped after about 2 1/2 weeks. I've gained 15 pounds since I started chemo in July (most of it during the last few Taxol tx), so as soon as Christmas is over I will trying to lose those pounds in earnest. I was lucky in that I did not get any neuropathy.
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do yiu all think yours is water weight? I hate this.....legs and even thighs swollen. Am on lasix also. My new chemo also causes it
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MO just called. They want to check me tomorrow pre #9 infusion. She is talking about delaying it or something bc of fear re permanent neuropathy. I want this over with on 1/8-anyone have this happen?
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ladies I have gained some weight on taxol too or at least that's what I am blaming it on. Never mind that I have been eating candy off and on since Halloween lol. I had lost weight when I got my diagnosis but now that I have calmed down the weight is creeping up.
I have slight neuropathy but not much and it doesn't bother me. I have taken l-glutamine throughout. I just did taxol #11 today and I pray my blood work holds up ( it's low) for #12. Last week I had to do neupogen shots.
Hope you are all managing ok
Nancy
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tobycc...the swelling is in the lower legs and ankles. Not horrible but there. But much nausea at this point
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