May drop Taxol from Carbo/Taxol combo starting #4

Scotgirl
Scotgirl Member Posts: 31
in Uterine/Endometrial Cancer #1

My medical oncologist finally opened up to me this past treatment #3 of 6. There has been this aurora of vagueness from my doctor about the side affects I have been experiencing to the point of frustration. I finally told her that the neuropathy in my fingers, feet, toes, and trunk neuropathy as well is more than I am willing to live with. Not feeling my finger tips or my toes is awful as many of you have experienced, I hearing loss as well, but that's another story.  So I asked what were my options going forward. This is how the conversation went. She told me that I could have stopped at surgery because I am so early stage even though it is a grade 3 clear cell cancer which is always the caveat to this discission making. But the 6 treatments of Carbo/taxol is protocol for this grade cancer, since they don't have the data on clear cell because so few people get it - 4 out of 100,000! They rate it up there with ovarian and similar cancer cells that share the same histology. So the chemo is for the systemic insurance policy in case of any escaped irate cells. Since there is no cancer, at this time to target, it is just that, an insurance policy with no guarantees. Ok, so the conversation continues to 3 treatments are better than None but 6 are better than 3. We can dial back the taxol by 20% to see if my body deals with that and alleviates the neuropathy, well 1 week after #3 chemo, neuropathy still bad with all the same sympthoms, rash, ear ache, body pain, severe constipation which is caused by neuropathy as well as intense burning after BM, yikes! So my next option is to drop the Taxol and just continue with the Carbo alone. I was wondering if anyone has gone this route. From what I understand the Carbo also causes neuropathy. So,that would be #4 on Dec 20 Next step is just to call it quits With the chemo and keep my fingers crossed. I am in fear of continuing what life I may have left, deaf, dumb and possibly vision impaired which is the only thing that hasn't happened to me so far. Appreciate anyone's experiences with just Carbo.

Comments

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #2
    I understand totally what you

    I understand totally what you're going through except I have UPSC, Stage II and you have clear cell - both grade 3 aggressive cancers.  I only made it through three chemos.  My doctor did not give me any other choice - it was either the taxotere/carboplatin combo at full strength or nothing.  Mine was also "insurance" chemo.  It was my GP who looked at the total me and said it's your oncologist's job to kill the cancer and my job to make sure he doesn't kill YOU.  The side effects were horrendous and a year later, I'm still dealing with them.  Thank heavens my liver seems to have recovered although the neuropathy is still there; my stomach problems continue and the fatigue is pretty much the same.  

    I can't tell you what to do and these aggressive cancers are sneaky **** but personally, I value quality over quantity.

    Can you talk to another doctor - maybe your GP and get their opinion?

    Love,

    Eldri

  • MAbound
    MAbound Member Posts: 1,175 Member
    edited December 2016 #3
    Agree With Eldri

    Eldri is absolutely right about oncologists being so focused on curing us that they perhaps lose sight of quality of life issues. They must feel like they're herding cats trying to get us through treatment because the side effects can be so awful. I like to think we'd all endure them anyway if we could just have some assurance that they won't be permanent, but none of us seem to come out of treatment the same, so our doctors can't give us that kind of guarantee. In the end, nobody but you can weigh the pros and cons of pushing on or quitting chemo. You're the one who has to ultimately live with your decision. I'm so sorry that you've been having such a hard time of it.

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited December 2016 #4
    Oh dear Scotgirl

    I'm so sorry you are still struggling with all this- I was hoping it would all smooth out.  I also can't tell you what to do - I had my taxol cut by 25% the last 2 treatments and administered over a longer period.  She had also FINALLY told me something similiar to what you heard, that this was all just insurance and that we could stop at 4 or 5- and she'd be happy- if it became a bigger problem because those side effects were likely permanent!!  My husband and I were quite thrown by all this info!!!  That is part of the reason why I decided against radiation- she kept calling it "ICING" and ins and I was NOT about to go through all those long term things people talked about after I'd already been through the chemo stuff. 

    (((HUGS))) and prayers as you make decisions regarding your ongoing treatment plans <3

  • Scotgirl
    Scotgirl Member Posts: 31
    edited December 2016 #5
    Thank you Nellasing, MABound & EZLiving66

    Thank you ladies for adding your opinions, I appreciate all any any input that helps me put things in perspective. I do have some new developments since the 3rd chemo but I will start a new thread since I have developed a new problem regarding my last brachy therapy this past Tuesday.

  • Unknown
    Unknown
    edited December 2016 #6
    I skipped taxol for one treatment.

    Your story sounds like mine, my doctor decided my (3 or 4, I can't remember which) neuropathy was too great to continue with taxol.  When I insisted, he said he could substitute taxol with taxatore, but I had already heard enough about that to say no.  So with my next treatment, I had carbo only, NO taxol.  It was perfect, no nerve pain, absolutely astonishing how much better I felt.  I did finish with 5&6 with lower dose of taxol, and I think the last two weren't as bad with pain, however fingertip and toe numbness has persisted for me.  For me, I have gotten a little better, especially the feet, not so much with the fingertips on my right hand.  I had heard that even three taxol treatments work very well.  Hugs Nancy

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #7
    Good to hear from you

    I haven't seen you on here for awhile, hope everything is going welll for you.  How are you doing?

    Lou Ann

  • Scotgirl
    Scotgirl Member Posts: 31
    edited December 2016 #8
    unknown said:

    I skipped taxol for one treatment.

    Your story sounds like mine, my doctor decided my (3 or 4, I can't remember which) neuropathy was too great to continue with taxol.  When I insisted, he said he could substitute taxol with taxatore, but I had already heard enough about that to say no.  So with my next treatment, I had carbo only, NO taxol.  It was perfect, no nerve pain, absolutely astonishing how much better I felt.  I did finish with 5&6 with lower dose of taxol, and I think the last two weren't as bad with pain, however fingertip and toe numbness has persisted for me.  For me, I have gotten a little better, especially the feet, not so much with the fingertips on my right hand.  I had heard that even three taxol treatments work very well.  Hugs Nancy

    Question for you

    Hi, Donswife48, do you mind if I ask what your diagnosis was? I could continue with just Carbo but still mulling that over since it also causes Neuropathy.

  • Scotgirl
    Scotgirl Member Posts: 31
    #9
    Lou Ann M said:

    Good to hear from you

    I haven't seen you on here for awhile, hope everything is going welll for you.  How are you doing?

    Lou Ann

    Hanging in . . . Taking it as it comes

    Hi, Lou Ann, Lots still going on, seeing my surgeon this Monday for a look see, why I have vaginal mucositis discovered during the prep on what was to be my final brachy therapy. Also, will be seeing cardiologist because my pulse has been consistently high each time I go for treatments, chemo or radiation vitals have continued to rise.

    i feel like I have soooo much to say every time I post that I feel like it is getting so old because I have yet to post something positive. But I will get there. Thanks for thinking of me and all my best wishes for a peaceful holiday and a brighter new year.

  • Editgrl
    Editgrl Member Posts: 903 Member
    #10
    Scotgirl, this is exactly the

    Scotgirl, this is exactly the place to post about whatever is going on, good or bad.  It's not getting old...  we want to hear how you are doing.  I'm hoping that your doctor has some answers for you on Monday. 

  • Kamushka
    Kamushka Member Posts: 22 Member
    #11
    Neuropathy

    I was in so much pain after chemo ..I would get it on Tuesdays and feel fine until Thursday night when I was in the throes of hell and bedridden for seven days! Had to use a cane to walk a few steps to the bathroom. First doc suggested continuing steroids then prescribed hydrocodone which allowed me to sleep. When neuropathy symptoms showed up they lowered taxol to 80% and no more pain no more hydrocodone after chemo, just the fatigue. I too was scared of irreversible neuropathy but have noticed some improvement after chemo #4and #5 and last one coming up in February.

  • Peggylee
    Peggylee Member Posts: 13
    #12
    My story

    I have only posted on here twice in the beginning  of this nightmare. Diagnosed papillary serous stage 1B grade 3. I wanted quaility of life from the beginning.  Refused to have my nodes removed.  Oncologist advised six treatments taxol and carboplatin. Neuropathy started after two treatments,  I wanted to quit.  Oncologist offered three options,  I choose to do two more rounds of just carboplatian and quit.  Right or wrong  at this point, I'm happy  that I did.  Oncologists didn't  think  the neuropathy would improve, thankfully it has dissipated.  My only problem has been with painful constipation and brain fog.  Drink 32 oz. Of water, metamucil, stool softner at bedtime helps. First time I had horrible constipation....only thing that worked was drinking prep for colonoscopy, took 6 hrs for relief.  I'm not advising anyone to be as bullheaded as me and pray I made the right choice.  Pray we all can live long and happy lives.  Thank you for being and sharing., God bless.

  • Kamushka
    Kamushka Member Posts: 22 Member
    #13
    Ice

    My oncologist cut taxol to 80% and it lessened the horrible neuropathy pain. She also suggested I put my feet on ice packs during 3 hour taxol treatments and hold an ice pack for fingertip pain......seems to work. Ice helps keep taxol from getting that far or so the nurse said. Hope it helps! 

  • gail8
    gail8 Member Posts: 1
    #14
    My oncologist at a major

    My oncologist at a major cancer center in NYC told me she would cut out the Taxol In the event of neuropathy, so there are clearly differences of opinion in the medical community. 

  • DrienneB
    DrienneB Member Posts: 182
    #15
    Kamushka said:

    Ice

    My oncologist cut taxol to 80% and it lessened the horrible neuropathy pain. She also suggested I put my feet on ice packs during 3 hour taxol treatments and hold an ice pack for fingertip pain......seems to work. Ice helps keep taxol from getting that far or so the nurse said. Hope it helps! 

    Ice

    This makes senses--putting ice packs on your feet and hands--since the frozen helmet treatments during chemo can keep people from losing hair.

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