Stopping chemo early

beeline

Hi all,

I would love some advice or input from fellow stage-3ers. My MO wants me to stop taxol after only 6 doses due to neuropathy symptoms. He says the potential benefit is not worth the risk of further loss of function. I have had symptoms of burning, tingling and numbess in my hands and feet since the first dose and it has gotten progressively worse and longer lasting though I wouldn't have thought it was bad enough to stop chemo, especially given my high risk of recurrence as stage 3C. After #6 I found I couldn't open a bottle of bathroom cleaner that requires a squeeze and turn. No amount of trying to squeeze made a dent. At that point they skipped my next dose but it didn't resolve enough. Now I have missed 2 and if I continue it will be at a lower dose. We discussed it at length and my MO would stop it now but he is leaving the decision to me. He thinks the hormone therapy is more important and is very positive about my prognosis. I like and trust him, but am really torn. Both he and my husband assumed I would ignore his advice and push on (apparently I'm that stubborn!), but at this point I can't see that I would get through more than another couple of rounds and I don't know if it is worth the risk of permanent neuropathy for 1-2 more lower doses of taxol.

Can anyone share a similar experience and what you did? I would love to hear from anyone who didn't finish their full course of treatment, especially long-term survivors, but any thoughts or input would be appreciated!

couragement

Hi beeline,

I am so sorry that the treatment has been so rough with neuropathy. I have several underlying conditions that led my non-oncologist specialists to believe I would have severe neuropathy... and indeed I did (I had been struck by lightening in my 20's and have multiple autoimmune issues). So after two rounds of TCHP my oncologist moved me over to Gemzar which is normally a Stage 4 drug. I was able to finish off all my treatments except for the last round of Gemzar (due to low platelets continuously). The severe neuropathy did not last, although I feel it occasionally when my body is inflamed or I overdo it with movement. I am also not taking AI's due to what we all believe would be severe side effects. So it is all quite scary on many fronts not to have the normal course of treatment (I also did not do radiation even with a few positive nodes due to my other illness'), but I am coming to terms with it. I wonder if your doctor would go for Gemzar in addition to hormone therapy. That might give you a bit of security. These constant decision making intersections are so difficult and exhausting while you are in the middle of feeling poorly.

On a happy note I am delighted to know you are in NZ. My husband and I used to live on the Coromandel and miss is very much! May the beauty of the country bring healing to you at many levels.

Wishing you all the best with this decision making and your course of treatment. Please let me know how you are doing.

Sending hope and love.

couragement

Oh, by the way, I iced both times (feet and hands) with the Taxol/Carbo combo and it didn't help. But some people get some good results.

beeline

Hi couragement, thank you so much for your reply. How fantastic that you used to live on the Coromandel, such a beautiful spot! I lived in California for 10 years before moving here and often think of coming back though it feels much more complicated with BC.

I am sorry about your experience with peripheral neuropathy, too! In retrospect I can see that I was probably set up for it due to another health problem I had in my 20's, but that I had nearly forgotten about. I had a long talk with the nurse yesterday who I quite like as a foil to my rather young, hot-shot MO (who I also like and trust). She is a survivor herself and has been an oncology nurse for more than 30 years. She really feels strongly that my MO would have suggested a different chemo or more AC if he thought it would make the difference, so I am trying to accept the recommendation. It is so hard not being able to predict what will happen or know precisely how much treatment anyone needs. You are right it is scary not to have the normal course of treatment. I am hoping that stopping now may reduce potential issues with endocrine therapy... but who knows.

Thank you again for your kind thoughts -- sending mine your way, too! xx

Newnorm

Hi beeline

I’m sorry you’re suffering. My Chinese herbalist who I saw the entire time I was having all my treatment recommended that I put my hands and feet in hot water for as long as possible every morning and evening during the taxol treatment. I did, and I didn’t suffer any neuropathy. I can’t be sure what helped but it’s worth trying. Water has to be hot (not burning), but hot. 10 mins at least until it cools. Good luck

beeline

Thanks Newnorm, I’ll give it a try!

couragement

Hi Beeline,

I hope you have been well. Any news on upcoming treatments and timing? Thanks for responding. I love the description of your MO and our fellow survivor nurse. What a team. Well done finding them. I like to hear about the thought and care they give you.

It has been rather New Zealand like here in California, rainy and stormy, and cool. It feels great. Did you ever read the book "Kiwis might fly." It is a hoot, written by a female British author who rides thru New Zealand on a motorcycle.

Steady on!

Meow13

Beeline, what about hormone therapy, should be effective since your are er and pr positive. Some doctor's don't think it an effective treatment not sure why data supports them especially aromatese inhibitors.

leftduetostupidmods

My diagnosis was only IIb, but also grade 2 (meaning chemo MIGHT help). I almost gave up mid treatment due to side effects, ended up finishing it. Now peripheral neuropathy, apical pulmonary fibrosis and a couple more things are part of what makes me permanently disabled.

beauz

Beeline, I understand your worry of stopping chmo early. I had neoadjuvant chemo, scheduled 4 ACs and 12 taxols. But I only did 4 AC and 7 taxols. My MO gave me reasons of permanent neuropathy, but i didn't think my neuropathy was even that bad with only feeling of a thick pad under my feet. The real reasons I think were my low level of neutrophils. I had three weeks break in between #4 and #5 because of low count and my MO refused to give me white blood cells boosters to help, but he reduced the dose of taxol by 15% after #4. Then my low count happened again after #7 and didn't bounce back after 2 weeks break.

Many stage III-ers had more chemos after the heavy duty chemos, and many went on trials of ibrance. I had 8 rounds of Xeloda after my surgery.

Good luck.

beeline

Thanks everyone for your kind responses!

couragement - so thoughtful of you to check in! I have accepted that chemo is done for me now and have been referred to radiation (which was always the plan, just starting sooner now). No timeline yet, but I am trying to enjoy being in limbo with no treatment or appointments. We've had a heatwave in Wellington, highest temperatures in 150 years! Felt much more like southern CA for a few days

Meow - hormone therapy is definitely on the horizon. We're going to try for OS+AI based on the recent studies showing better DFS. It's part of why my MO was so adamant about stopping chemo. He noted the side effects of hormone suppression and also how important it is for ER+. He reminded me that "it's a marathon, not a sprint."

seachain, I'm so sorry to hear about your lasting effects from chemo. I feel like it's a failure of imagination for me that I haven't been more afraid of permanent peripheral neuropathy, like I can't imagine that happening to me while I can easily imagine a recurrence right now. But of course, before my diagnosis last year I couldn't have imagined BC at all either!

beauz - thank you for sharing, your story is really similar to mine. I also didn't feel like my neuropathy was that bad even though it started to have some functional impacts. My MO has said he doesn't think more chemo is worth it for me and would rather get me onto hormone therapy sooner. I am also trying to enter a trial for verzenio (a cdk4/6 inhibitor like ibrance), but it is only 50/50 if I will get the treatment. I see you're in Australia. Was the Xeloda covered under the public system? I don't think it would be here.

beauz

Beeline, I am being treated in public system. I got Xeloda tablets from my local public hospital, costed me about $30 something for each round (two weeks ). I do hope you can get in the trial of verzenio and get the treatment.

Anonymous

Thank you to all for sharing information about your treatment and side effects. My heart breaks to read what some of you go through.

I have a question about Peripheral Neuropathy. It's mentioned in numerous posts I read throughout these forums.

My sister has had very bad rheumatoid arthritis much of her adult life. She is also overweight.

Do these health issues increase her chance of getting Neuropathy when she begins her chemotherapy treatment next week? Thank you!

Polly413

beeline - I am not a stage III (I'm II) but I did 4DD of AC and was supposed to do 4DD of taxol. Got through the AC and 1DD of taxol. Read that weekly taxol has same benefit but less se than DD so proceeded with weekly taxol. Finished 5 weekly which added to the 1 DD gave me the equivalent of 8 weekly. At that point my MO had already reduced my weekly dosage because of signs of neuropathy in my dominant hand. After I was prepped for the 9 weekly infusion, I had my regular meeting with MO and told him I thought I was getting neuropathy in my legs. We decided to stop all inclusions, included the one I had already been prepped for. I told him I was willing to get this 9th infusion but he said "How would we feel if this next infusion pushed you over into permanent neuropathy?" I appreciated so much that he used "we" in that question. He said I had received most of the benefit already. I stopped right there. The neuropathy in my hand went away after a few months and the leg issue never reoccurred.

I iced hands and feet during Taxol but I kept removing my dominant hand from that ice pack to eat and fiddle with the iPod and so forth. I am convinced that I would have avoided neuropathy in that hand if I had left it in the ice. I am concerned that anyone would advise the use of heat during infusions. You would dilate the blood vessels and encourage that chemo to go to your hands and feet, right? Yikes! Polly

beeline

beauz - thank you. Me too.

viewfinder - I have read that diabetes increases your risk of neuropathy, but autoimmune illnesses like RA can actually decrease the risk. Good luck to your sister.

Polly413 - thanks for sharing your story. It’s funny, for some reason I had 8 in my head as the number I would be ok stopping at. Your MO sounds like mine including you in the decision. I wish they knew more about it so we could know if one more would push us over the edge. I also iced but only after my third infusion. So glad the neuropathy resolved for you.