Pulling the plug on chemo - Neuropathy - Thoughts

eva9310 · 10-02-2014, 01:45 PM

Yesterday my MO decided it's time to pull the plug on chemo. The Taxol neuopathy is manifesting in the itching of my feet, hands knees and elbows. It's miserable. I have also had non stop diarrhea for 7 weeks. I've received all 4 of the A/C treatments 3 out of the 4 herceptin/perjeta combos with taxol and of the 12 weeks of taxol if I quit now I will be skipping the last 5 Taxol treatments and 1 Herceptin / Perjeta.

I think I can push through another two treatments to get to 9, I think she said that there is statistical data that shows there is greater benefit to getting to 9. That's two more, I think I can make it. Ultimately I would like to get to 10 and get the last Herceptin/ Perjeta combo.

Here is my question, if I push through and take two more taxol treatments, can I get the H & P on the 10th cycle without the taxol?

She's worried about permanent neuropathy damage and that it won't be reversible. I get that, the thing is I don't have horrible numbness & tingling. Mine is the rash and itching but she said that is a manifestation of the neuropathy. I could live with the numbness I have now forever but not the itching. Nothing makes it better and there is nothing left to prescribe me.

I told her I would push through and she said she would leave me on the schedule. Then last night I got an email from MD Anderson that my schedule changed. She left me on the schedule but moved my times to 2:30 PM. I'm guessing she's not thinking I'm going to continue.

Any thoughts? I don't know what the statistical data shows between 6 & 9 treatments but if any of you who are medical journal experts I would love to hear what you think.

tricia keegan · 10-02-2014, 02:44 PM

Hi Eva,

If I read your dx correctly you're still early stage so although I really have no info to back up I think if you really feel the itching is too much I'd stop now. I don't have the stats to back this up but do have a friend who pushed herself through and has been left walking with a cane due to the Taxol Neuropathy, I think your Onc may be fearing the same or similar for you and while this is not common for everyone who has Taxol, I think those that do have this strong reaction should perhaps look at stopping early. Just my personal thoughts based on my friends issue's.

Nurse4u2day · 10-02-2014, 03:48 PM

Eva I was doing the taxol/ herceptin xs12. I was told that most people manage to get through 8 or 9 treatments and that the last few are just icing on the cake. I pushed through all 12 txs mind you fear of my IBC encouraged me

. I was lucky in that I just had mild neuropathy that until now reversed itself. However which I did not know at the time that the constant itching of my left foot could possibly be related to my treatment. I never mentioned to my doctor because it started after I finished taxol. Also my oncologist nurse said that there are different stages of neuropathy. At stage one and two it's reversible but at stage 3 it is not. I would ask your doctor about this and find out where they think you are with this neuropathy. I do agree the itching sucks. Mostly bothers me when I'm not doing anything. The Atarax has helped so I imagine that yours is worse.

BonnieR · 10-02-2014, 09:13 PM

Not just the same situation as yours. But. I was d/c after 4 doses of TCH due to mild neuropathy. My onc didn't want to see it get more severe. She felt I had adequate coverage and I continued for one year on Herceptin. Neuorapthy can be debilitating and permanent. Its a fine line. And affects QOL
Keep the faith

sarah · 10-03-2014, 04:14 AM

are you on an every 3 week regime or every week? wonder if that would make a difference. I did every week for 6 months. I did have severe itching but it wasn't considered extraordinary in my case although I ended up with open sores on my arms. Also I wonder if you could take a pause and then re-start? At one point I was offered a pause after 4 months but decided to push on through. You'd think by now they have medicines to help with this. I think I was often given an anti-allergy infusion with the chemo, not sure what it was but I know it made me too sleepy to drive.
So sorry you're facing this dilemma. Perhaps speak to other doctors to find out how they've solved this, if they have. Also Taxotere is the same thing as Taxol only a synthetic version, does it have the same side effects?
health and happiness
sarah

eva9310 · 10-03-2014, 06:37 AM

Thank you all for your replies, I would say mine is severe, the bottoms of my feet now hurt just to walk on carpet. I can't walk on the pool deck and haven't for several weeks without shoes. Shoes bother me, I'm up all night trying not to claw my skin off. It's moved to all the folds of my skin, elbows, knees etc. The worst days are yet to come, tonight and tomorrow will start the bad days of itching. Oh my face is a total wreck now too.

I'm not sure why I was arguing with her, probably fear, but she knows what she's doing, they are some of the best docs in the country. I need to listen more, just like all my angst with surgery. I don't know who this person is that I've become. I'm normally not like this.

Time to listen to my docs and make the best decisions I can based on the information they have available for me and my case.

I'm going to drop the chemo, just yesterday alone I opened 3-4 new wounds from scratching even though my nails are cut as short as they can be.

Also, can cipro (antibiotic for UTI) cause a yeast infection?? If so I can add that lovely gem to my list of issues right now. Hard to tell since my skin is just so sensitive right now.

I'm not a doctor and I have found peace with that.

Thank you all for being so supportive and offering any and all advice and experience that you have to share.