Considering skipping last two chemo infusions

CarlaInNC

So I've had 6 chemo infusions so far. Four AC, all of which make me awfully sick. One Taxol infusion, which we thought would be easier, but had intense bone pain, neuropathy, etc. One Abraxane infusion, same response as Taxol.

My onc says I've had worse reactions and more side effects to the chemo drugs than most. I've had enough and am considering declining the last two Abraxane infusions.

The one thing that makes me hesitate however is my TN status. I'm weighing the risk of not taking the last two infusions against the risk of recurrance. As the only therapy available for TN, there are no do-overs. This is it. But jeeze I'm tired and sick of being so...sick.

Had a lumpectomy and full hysterectomy within two weeks of one another 3 weeks before starting chemo. Having a bi-lat in Sept with reconstruction. So there's still a long road ahead of me.

I'm wondering if any other TN ladies have opted out of their last few infusions and what the result may have been.

Any regrets? Were you at peace with your decision?

Lainey64

Hi Carla,

 I'm sorry you're having such horrible side effects.  It's been so long since I've posted so pardon me if I don't use the correct "lingo", but I'll try   I had DD chemo - 4 AC/4 Taxol. I pretty much had the same SE's as you're having now.  I remember the taxol pain was horrendous.  I think you could probably find a few of my old posts about it.  It was agony and although the nausea I had with the AC was gone, that didn't help much.  My onc advised to start taking ibuprofen before the pain from the taxol kicked in and take it continually.  I was only taking Tylenol before that because I worried about the port and the thinning meds I was taking but my doctor said the only thing that will really help the taxol pain is ibuprofen and it was OK to take.  So that's what I did and while the pain was still there, it was manageable for the last couple of treatments.

As far as discontinuing the treatments, you have to do what's right for you, but if you can handle just 2 more, please try to stick with them.  The treatment is designed the way it is for a reason.  Have you tried any alternatives to help?  I.E. massage, meditation, L-glutamine for the neuropathy?  And of course the biggest, prayer.  It helps alot!

I just made a post yesterday regarding ovary removal/hysterectomy.  I am almost 4 years out now and my gynecologist has suggested I think about it since my ovaries aren't working anymore anyway.  Was there a reason why you chose to have it done?  Just wondering because we are trip negatives and I'm trying to weigh all the pros and cons.  It's all so confusing sometimes!

God Bless You and please let me know what you decide!

Elaine

jenlee

I'm not TN, but wanted to give you some encouragement. You're over halfway there, so try to hang in there. Chemo is your systemic treatment and meant to eradicate any cells that may have escaped from your tumor. Are you being given Neulasta for your bone pain? Regarding neuropathy, my understanding is that in most cases the neuropathy fades away. I'm only a few months out, but I figure if I have some lingering neuropathy, at least I'm still alive. I finished chemo in April, had a lumpectomy in May while deciding on which type of reconstruction, and had my BMX with immediate reconstruction six weeks ago. Because of the type of reconstruction I chose, I didn't even seem like a BMX. I'm back to my normal routine, active, and feeling relieved and very positive. Just waiting for my hair to grow, but this too will pass Believe it or not, the dreary days of my last few months of chemo, where I was so incredibly drained, suffering from some bad side effects and ridiculously depressed, are already almost like a distant memory or like a vague bad dream. You can do this!

Lou10

I'm not TN either, but I had terrible side effects from docetaxel (Taxotere) so I hear ya. Just a suggestion ... before considering declining further chemo, ask what your options are. My last two doses were reduced because of neurotoxicity (I was told the lower dose would still be effective) and I also increased my pain meds.

melly1462

I hope you don't mind, I'm not TN but your thread title caught my eye.  I too wanted to stop at #4....my body was telling me enough.  I had a bit of a breakdown in onc's office and she convinced me to please stick with it.  I had already made peace and was comfortable with stopping.  I knew she was right about my high grade and HER2 being aggressive so I agreed to tough it out til the end.

You know what got me through those last two??  Exactly what your tagline says:  Taking it one day at a time.  I couldn't think about the next chemo because I got depressed.  I could only think about the day at hand.  At my last visit she took my hand and told me how happy she was I stuck with it because I was one of those patients who had a really rough time with chemo.  

Like the others have said, talk with your onc.  Mine, as I hope most are, was very responsive to my needs and concerns.  

Wishing you well with whatever decision you make.  

Alicethecat

Hi Carla

After my oncologist reduced the Taxotere dose by 20 per cent, I had practically no side-effects, although I still had - and have - red blotches on my arm.

However, I found the second infusion much easier.

Is it worth asking your onc if you could have a reduced dose too?

Best wishes

Alice

CarlaInNC

Friends:  thanks so much for the encouragement. Perhaps I will indeed ask the onc what the other options are, ie a reduced dose. But I wonder why they would order a higher dose if a reduced dose is just as effective?

The neoropathy is more a nuisance at this point. But the bone pain is a show stopper. I don't know why they can't give me something to get in front of it. None of the OTC meds worked, nor did Vicoden. Surely there are other options.

I've decided to give acupuncture a whirl to see if it has any effect on the neuropathy and fatigue. I'm not quite on board yet with the Chinese medicene and herbs.

Thank you all again for your encouragement. Every day is a little different, so goes the emotions that accompany every day.  

CarlaInNC

Lainey64:  I had the hysterectomy because they found a tumor on my ovary two weeks after finding the tumor in my breast. And since I'm BRCA1, we decided the safest thing to do was to remove everything. The tumor on the ovary was benign, but the gyn onc felt it was just a problem waiting to happen. So away it went.

The hyst was actually not too bad. Used the DaVince robotic device. I'm glad I don't have to worry about ovarian or uterine cancer on top of breast cancer.

The hard part was I had the hyst two weeks after my lumpectomy. And two weeks later started chemo. So it's been one brick after another. :-)

 Good luck to you! 

SelenaWolf

I'm sorry you are struggling with this.  It isn't fun, is it?

I'm not TN either.  I found that it wasn't so much the Taxol that gave me bone pain, it was the Neulasta shot.  I didn't get the shot until 48 hours after the Taxol and, for those 48 hours, I was fine.  No side effects whatsoever.  Then, I'd get the shot and, within 24 hours, I'd be down-for-the-count for 3-5 days.  It felt like my bones were made of napalm.  Nothing helped.  I had to grit my teeth, hang on for dear life, and wait for Day 4, when I knew the pain would start to scale back and I could feel somewhat "normal" again.

As for the neuropathy; I didn't have too many issues with my hands, but my feet/toes were problematic and I lost a few toenails (which have since grown back and, today, are painted screaming red  ).  My MO said that it could last for up to a year following treatment; however, I found that - when I started hiking/biking again - the lingering neuropathy cleared very quickly.  Within days I noticed that it has subsided completely.  When I broached the subject with the oncology nurse, she said that it was possible that the exercise increased my circulation, which - in turn - helped sweep out the drug deposits in my toes that were responsible for the neuropathy.

I think lou10 has a good suggestion.  See if a lowered dose is an option for you and, if so, try it.  Perhaps you will be able to see this through to the end...

guitarGrl

I had a similar diagnosis to you and had 4 rounds of cytoxin/taxotere. 5 years now, cancer free. So you probably could skip the Abraxane. 

QuinnCat

I'm not TN, but did have A/C and T DD.  After the 2nd and 3rd Taxol, I developed neuropathy in my hands and feet.  Not as bad as it was to become though.  My MO offered a reduced dose on tx#4 of Taxol, but I decided to take the full dose.  My neuropathy jumped the shark 2 weeks after that last tx of Taxol.   Seven weeks out, I still have significant neuropathy....for awhile it got better, but with my new chemo (which most don't get after ACT), it regressed from 45% of worst case back to 75% of worst case.  Now I'm deciding whether to skip the last 2 doses of the chemo I'm currently on, though neuropathy is less likely with this chemo - though it appears to contribute as one PA said recovery from neuropathy shouldn't regress.  It's still early in the game for neuropathy recovery, but sometimes I wish I had taken my MO up on the reduced dosage for my final Taxol. Walking is hard after 30 minutes; my feet just burn.  My hands are involved too.  It's so much a guessing/risk game.

QuinnCat

I'm not TN, but did have A/C and T DD.   Maybe my own experience will help?  After the 2nd and 3rd Taxol, I developed neuropathy in my hands and feet.  Not as bad as it was to become though.  My MO offered a reduced dose on tx#4 of Taxol, but I decided to take the full dose.  My neuropathy jumped the shark 2 weeks after that last tx of Taxol.   Seven weeks out, I still have significant neuropathy....for awhile it got better, but with my new chemo (which most don't get after ACT), it regressed from 45% of worst case back to 75% of worst case.  Now I'm deciding whether to skip the last 2 doses of the chemo I'm currently on, though neuropathy is less likely with this chemo - though it appears to contribute as one PA said recovery from neuropathy shouldn't regress.  It's still early in the game for neuropathy recovery, but sometimes I wish I had taken my MO up on the reduced dosage for my final Taxol. Walking is hard after 30 minutes; my feet just burn.  My hands are involved too.  It's so much a guessing/risk game.

CarlaInNC

Gang, as a followup, I did forego the last chemo treatment. The onc agreed that the neuropathy had reached a level that if we gave it a little shove with another infusion of Abraxane, it could become permanent. So I did 7 out of 8 infusions, and I'm very comfortable with the decision.

I was prescribed Neurotin, may have to take it as long as 12 months to battle the neuropathy. Still have numbness in my hands and feet, but hoping it will improve. 

I am now a little over 2 weeks out from my last infusion. I am feeling better every day, though still tired a lot. Trying to talk myself into getting back to the gym to start swimming, knowing that will speed the recovery from chemo and make me stronger for the upcoming mastectomy in October.