Weekly Taxol group
Comments
-
I took vitamin B6 throughout Taxol but still developed grade 2 neuropathy by #10. It was supposed to help though. At least now at2 months PFC my neuropathy is much better.
0 -
Hi Brink - I'm sorry to hear about your neuropathy, but glad it is getting better. Can you share your symptoms? I have had tingling/numbness since #3. Now after #6 I've started to get some weakness (can't open things that you have to squeeze and turn at the same time) and just wondering how worried I should be....
0 -
Beeline - Sorry you are having it too. I started feeling tingling in my fingers by #4, then by #8 some mild pain shooting up my forearms, at which point I was prescribed Gabapentin. I could not squeeze and open things as much as before, and couldn't put much pressure on my fingers. As in peeling an orange, or even a clementine.
The Gabapentin kept pain at a minimum, and helped my hot flashes and sleep too. But the numbness continued to get worse, even at maximum 900mg/day dosage. So by #11 my MO reduced my dosage by 20%. It was a bummer but it really prevented my neuropathy from getting worse. If she hadn't my neuropathy would have been upgraded to grade 3, which means I would have a hard time with basic skills to take care of myself. As it was it was taking me 3 times as long to button my shirt...
Looking back I wish I had iced my fingers from the beginning, I tried to do icing at around #5 or 6 but it didn't really help at that point.
Thankfully the nerve pain dissipated soon after I finished the last chemo, and I stopped the Gabapentin at like 2 weeks PFC.
0 -
Thanks Brink. I started icing at #4 but I already had symptoms so if anything I think it might just have slowed down the progression a bit. My onc team has mentioned stopping early or reducing the dosage... I don't know if I'm more afraid of permanent neuropathy or not being able to finish at the full dose but I guess I'll have to discuss with my MO tomorrow. It's good to hear things have gotten better for you!
0 -
Thats helpful. thank you
0 -
I'm worried about nerve damage, too. I have neuro testing on Wednesday. I wonder about reducing dosage or doing chemo every other week. I know six weeks is close to the full twelve in effectiveness, but I really don't want to stop short of the full course. I am going to start using my walking poles out and about, and consistently using my ankle brace. Knitting like crazy, good therapy.. My typing is getting worse. Dropped the TV remote today. Ordered a pattern for chemo hats and head-wraps. Gotta keep using those hands. Maybe get out my pan of beans and rice to get some stimulation daily-- good thing I don't have a dog.
Gabapentin is an old friend 2100 mg a day. I wonder about its nutritional value, LOL.
0 -
My first post on this site. I start #3 Taxol tomorrow & so far it hasn’t been too bad. I only have to take one steroid 4mg tablet. I get the red face the next day, but it’s gone by the next day. My 4 chemo treatments went well, no nausea.
I’ve noticed my hair is starting to grow back, but it’s very thin & longish. Eyelashes are falling out now. Haven’t had surgery as yet, when all chemo is over surgery will be coming. I will be having bilateral mastectomy, different type of cancer in each breast. Was DX September 7,2018, hasn’t spread to other areas if the body. I hope to learn a lot from this site
0 -
MCBaker - I’m not sure if it’s a good idea to use your hands a lot. For me typing a lot would just aggravate the shooting pain in my fingers. Acupuncture is supposed to stimulate the nerves and I tried it, but it wasn’t effective enough to stop the progression. Maybe if your pain tolerance is high the acupuncturist can use thicker needles, which is supposed to make the treatment more effective. (Not to scare anybody, it only hurts when they stick the needles in, not really afterwards)
Just a note on hair regrowth, after my mom finished DD Taxol her hair came back curly and more fine. She shaved it to see if her hair would come back differently but it didn’t. From what I’ve read elsewhere, looks like chemo curls will disappear after 2 years. My hair has always been straight as an arrow. I would love to get some natural curls out of this!
0 -
I agree, Claritin works! Before chemo I took Zyrtec for allergies which worked better for that than Claritin. I played around with it and tried Zyrtec one week instead of the Claritin to see if there was a difference and I had more bone pain on that week than with the Claritin. I recommend Claritin too
0 -
MCBaker - how does it work that 6 weeks is close to the full 12 in effectiveness? I ask because I just got back from my pre-chemo onc appointment where they decided I should skip this round to try to give my nerves a chance to heal. I was so caught off guard I cried in the office for the first time since I got my post-surgery path results back in August. She told me you get the most benefit out of the first few doses so it doesn't matter so much if you need skip one or don't do the full 12. I didn't expect any changes at this stage so haven't done any research on it yet. It doesn't help that it wasn't my usual MO -- who my husband and I both agreed would have gone ahead with it. I just don't know if I made the wrong choice and should have fought to go on. The neuropathy doesn't seem that bad to me yet, especially not compared to the recurrence rates at stage 3C.
0 -
I have dealt with neuropathy for a long time. Physical activity is healing, but no pain meds other than gabby (or Lyrica, etc). Pain is a sign that damage is occurring. Stop. Resume with moderation when pain stops.
I think I need to take a vacation to allow my nerves to heal. Six is Wednesday. Next one after that will be appt with onco. I really don't want to stop altogether. Rubber-knees.
I agree-- so tough we can only rely on statistics to make our decisions. Fairly safe for me, but I want to live long enough to see my grandchildren.
0 -
MCBaker - That makes sense. Let me try to find something light for my fingers to do... Thank you for the tip!
0 -
Make piecrust, remember the tiny grains it needs to be rubbed into. Or use running your hands around in a pan of rice as a warmup for other activities. Get some interesting samples of carpet and rub your hands on them. Guess which one you are handling at the moment.
0 -
My nose. This gets gross. It is always running during the day. I have four boxes of tissues scattterred around the house, plus the always convenient TP. When I wake up in the morning, it is all crusty, with plenty of areas of blood. Getting up seems to get it moving, and I just got a steamer for starting the day without further irritating things with a q-tip or my finger. It loosens up everything for a gentle productive blow. I am wondering if my early waking has to do with those crusts interfering with breathing. I also have one of those cool mist thingies, at my bedside, but haven't used it since before the fateful day. Do you think It would help? Do you lubricate your nose with anything?
0 -
I go through a billion kleenexes a day. I assume it's just going to be like this until I'm finished with Herceptin. (Can't hurt to try the humidifier.)
0 -
Oh, no?!! It is the Herceptin? I was hoping for an end to it when I finish the Taxol. If that steamer helps so much to start the day, It is worth trying the cool mist. But so many things to do at the end of the day and so tired.
0 -
Oh it's absolutely the Herceptin. Can't tell you how many times I bend over and really thin mucus just runs out of my nose. I've told people I should have invested in Kimberly-Clark before I started treatment. . .
0 -
With me, it was NOT the Herceptin... I had bloody painfull crusts in my nose starting from about Taxol #3. My nose was running and if I blew it, it was blood all over the tissue (sorry for the TMI). My MO even sent me to see an ORL doctor. Nothing too amiss, but the doctor gave me a vitamin salve with panthenol to be applied in my nose in the evening. It helped a bit, the crusts were not so painfull in the morning. But what really helped was the end of Taxol, after about 3 weeks all nose-related problems were gone! I am on Herceptin now and no problems in this dept.
0 -
Just doing some research here, and vitamin e applied directly to the nose also seems to help. There is a clinical study, but they are only recruiting at this point.
0 -
I've been using small amounts of vaseline applied with a Q-tip to the inside of my nose. I also have 2 cool air moisturizer things in the house. The cool moisture has been helping with the bloody crusts. Between the 2 I can blow my nose a few times a day to clear it with minimal blood clots busting loose. The vaseline seems to keep the crusts softer and not so painful.
I hope this helps you all too
~Nanette
0 -
I also am using vaseline but don't seem to have it as bad as some of you. But just have a little tub by where I sit when things do get bad.
0 -
paw paw ointment helped so much with my nose. The problem came with Taxol for me 9I had no Herceptin).
0 -
I’m 4 weeks out from my last Taxol. I still have a sore in my left nare but it’s so much better than it was. I just shove lotion or oil up there. (Whatever I’m rubbing into my skin for radiation that day).
Regarding the neuropathy, I used CBD (legal in all states) and CBG (taken by tabs orally) and I iced for all treatments and have zero neuropathy. The CBD and CBG were recommended to me by a cannabis researcher. They do not get you stoned. Both my MO and BS were surprised I was not having issues with my hands. I didn’t take any vitamins. My fingernails still look beat up but they’re growing. I had my first haircut last week. I’m happy chemo is behind me. I ran 3 miles today. My energy is amazing. I never thought I could feel this good so soon after all that crappy chemo.
Hang tight, warriors
0 -
Is weekly Taxol always 3 weeks on/1 week off
0 -
Is weekly Taxol always 3 weeks on/1 week off0
-
Normally every week from what I’ve heard. Mine was weekly for 12 weeks, though I had a one week break when I became ill.
0 -
For MBC it is usually 3 weeks on, 1 week off I believe.
0 -
Ahhh. And the total duration would be tailored to the individual person?
0 -
SuefromSydney the frequency and duration is tailored to each person. I'm on dose dense Taxol which I have every 2 weeks for 4 infusions.
0 -
I believe most of us Stage 1 sisters do Taxol weekly for 12 weeks. I'd read enough before meeting with my MO to know that's what she'd recommend for my dx and that is indeed what my treatment protocol was.
0
