WHAT WOULD YOU DO?

Most of you know I got my first post treatment scan last week and it was clean as a whistle. My treatment consisted of 3( rads with a weekly dose of Cisplatin. I missed the last two doses of chemo due to low blood count. Doc has asked me to decide whether I want to take the last two doses just for peace of mind. He said he has absolutely no evidence to support taking it or not taking it. He reiterated this several times. The only pro I see in taking the last doses are I won't ever be able to blame myself if it comes back. The cons are many - delayed removal of tube, possible regression back to the eating problems I had, pumping 70 more ml of toxic goodness into my body for possibly no reason. So, what do you think you would do?

Comments

  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    Me
    Hi tuffenuff,
    I was asked if I "wanted" chemo with my rads, the chemo doc offered
    them. He said I don't need it but I could have it if I wanted, he said it
    helps the tumor respond better to the rads. When I asked will my treatment
    still be as effective without it, he said yes. So after reading about it and the
    side effects I decided not to have chemo and went with just the rads and
    as of today I have never been sick ( threw up ) throughout this ordeal and my
    side effects have been pretty minimal so far (5 1/2 months post rads) the usual
    taste and saliva but I'm doing pretty much what I did before I was dx.
    I never tell people what they should do, ask the man upstairs, he has guided
    you and your doctors this far, he will continue to do so.

    God bless
    Tonsil dad,

    Dan.
  • osmotar
    osmotar Member Posts: 1,006
    Choices
    Tuff,

    When I was going thru my rad treatments , I was scheduled to have 1 infusion of chemo/carboplatin for every week of rads, which would have been 8 chemos, since I had 7.5 weeks of rads, I missed 1 week due to low platelets, I asked my onco & rad docs when I should make that 1 treatment up, they said I didn't have to, because of all the previous chemo/rads & chemo one miss wasn't going to make a difference. I was willing to have it, because like you maybe the old adage more is better, I don't know...but I didn't want to ever think well what if , I ended not getting the last infusion...it's a tough choice and maybe my babble here doesn't answer your question.. at the end of the day do what you feel is right for you.

    Linda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Pro-Active
    For myself I have always took the pro-active route. Perhaps it's over kill, maybe not. But like you, I didn't want any what ifs down the road.

    So for me, I took everything they threw at me.

    There's no right or wrong answer, it can only be decided on what you can live with and standing behind the decisions you make.

    Best,
    John
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Tough question
    It's your decision. A friend who went through a similar treatment was comfortable not taking the last chemo, owing to her low blood counts. I took all of the doses. For me, I was very concerned about recurrance. If I had skipped a treatment, and the cancer had recurred, I would have blamed myself. It was not something I wanted to face.

    Deb
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    D Lewis said:

    Tough question
    It's your decision. A friend who went through a similar treatment was comfortable not taking the last chemo, owing to her low blood counts. I took all of the doses. For me, I was very concerned about recurrance. If I had skipped a treatment, and the cancer had recurred, I would have blamed myself. It was not something I wanted to face.

    Deb

    No Way
    is the wrong way, there are people on this board who had all
    treatments before and got a reacurence there are people
    who didn't so remember everyone is an individual and respond
    differently.
    Whatever you choose will be the right way.

    God bless
    Tonsil dad,

    Dan.
  • phrannie51
    phrannie51 Member Posts: 4,716
    Oh boy...I did this decision just a month ago...not easy at all!
    I'm like you in that I don't want to ever have to look back and say "what if I would have taken them"...you know, do EVERYTHING now, so I don't have any regrets....all the side effects from chemo tho, are begging to be put off to another day. I had to force myself to get my last chemo in August....I DID NOT want to go thru the mouth sores again, the tube feedings, and the misery of not being able to even drink water. But I opted to do it...when it came right down to the nitty gritty, I figured I didn't want to face something down the road, when I can get it over with now....

    Wasn't an easy decision, tho...

    p
  • hwt
    hwt Member Posts: 2,328 Member

    No Way
    is the wrong way, there are people on this board who had all
    treatments before and got a reacurence there are people
    who didn't so remember everyone is an individual and respond
    differently.
    Whatever you choose will be the right way.

    God bless
    Tonsil dad,

    Dan.

    Tough call
    My 2nd last dose was questionable due to counts but I did it. My last dose, the ONC said I "got a pass" as they had given me as much as they safely could. I volunteered to make it up later but she said it wasn't necessary. I put my trust in her and never gave it another thought. Tough call, I'd tend to lean on doctor's opinion.
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    it never ends
    Hi Cindy,

    What would I do? Take the final 2 doses. This cancer stuff caught me by surprise and I don’t want to see it again. On the flip side, maybe it is gone and the 2 doses are overkill. Tough decision, you made it this far without (disastrous) side effects, I would expect the same if you choose to continue.

    If it was easy………….

    Best,

    Matt
  • Ladylacy
    Ladylacy Member Posts: 773 Member
    CivilMatt said:

    it never ends
    Hi Cindy,

    What would I do? Take the final 2 doses. This cancer stuff caught me by surprise and I don’t want to see it again. On the flip side, maybe it is gone and the 2 doses are overkill. Tough decision, you made it this far without (disastrous) side effects, I would expect the same if you choose to continue.

    If it was easy………….

    Best,

    Matt

    Decision
    When my husband was diagnosed with laryngeal cancer in July 2010 they said that he would need 35 radiation and 3 chemo treatments of Cisplatin. Well he had the first chemo treatment and when he went back for the second his counts were too low so the oncologist put him off another week and then decided to split the dose in half that week and the other the next week. In the end he didn't have the third chemo session. Well after a PET/CT scan they said he was clear, two months later they had to do a biopsy and the tumor was back they said and referred him to Emory Winship Cancer Center. The specialist there told us that the cancer was never gone and that he should have had the 3rd chemo session and the chemo should have been changed since he was having so much trouble with the Cisplatin. He had a completely laryngectomy and throat reconstruction.


    Then a year later when he was going to have a procedure for the TEP they found, what they are calling a second primary cancer. So now the question is really should the first oncologist skipped the 3rd chemo. But that is something we will never know. He has since under 35 more radiation and 7 chemo sessions and now we are waiting for the results of the PET/CT scan to see if it got the tumor which is basically right below his stoma and we have been told pretty much inoperable due to location, previous surgery.

    So I would say, if it was me, I would go for the missed chemo and I know my husband would say it too. But just remember everyone is different in how they react to treatment. For some it works, for others it doesn't. Wishing you the best.

    Sharon
  • tuffenuff
    tuffenuff Member Posts: 277
    he argument i have been
    he argument i have been having with myself keeps steering me towards just doing it. the only thing that keeps popping in my head is that it has been 2 months since my last chemo so would it be an irrelevant dose since that much time has passed?
  • Barbara B
    Barbara B Member Posts: 40
    tuffenuff said:

    he argument i have been
    he argument i have been having with myself keeps steering me towards just doing it. the only thing that keeps popping in my head is that it has been 2 months since my last chemo so would it be an irrelevant dose since that much time has passed?

    For every case
    It seems that for every case there is a differing opinion. But that seems to be the way each person is diagnosed and eventually treated.

    My husband was originally scheduled for 3 chemo treatments and 35 radiation appts. Because of our concerns of "too much" chemo we opted to have the chemo broken down into 7 smaller (weekly) doses to coincide with the radiation.

    As it turned out (due to holiday schedules) after he had received 33 doses of radiation and 6 doses of chemotherapy it happened to be a Friday. He was asked if he wanted to come in on Monday and Tuesday for the final two doses of radiation and the final chemo treatment. He said no.

    From the beginning he was stubborn about the "one size fits all" approach. This was his way of rebelling (I guess). He is one year post treatment and doing well, except of course for the saliva and taste bud issues that everyone seems to share.

    Whatever you decide to do will be the right decision for you.
    Barbara
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    Barbara B said:

    For every case
    It seems that for every case there is a differing opinion. But that seems to be the way each person is diagnosed and eventually treated.

    My husband was originally scheduled for 3 chemo treatments and 35 radiation appts. Because of our concerns of "too much" chemo we opted to have the chemo broken down into 7 smaller (weekly) doses to coincide with the radiation.

    As it turned out (due to holiday schedules) after he had received 33 doses of radiation and 6 doses of chemotherapy it happened to be a Friday. He was asked if he wanted to come in on Monday and Tuesday for the final two doses of radiation and the final chemo treatment. He said no.

    From the beginning he was stubborn about the "one size fits all" approach. This was his way of rebelling (I guess). He is one year post treatment and doing well, except of course for the saliva and taste bud issues that everyone seems to share.

    Whatever you decide to do will be the right decision for you.
    Barbara

    Hmmmmm....
    "If there must be war, let it be in my day rather than my children's" I always liked that saying bc it meant (to me anyway) whatever takes care of the problem now, bring it on rather than later.

    I'm probably one of those ones that feels like "get it all now so no questions later" ....but then like everyone else says, it's your body and only you can make that call....I'm just sharing how I think :)

    Truly a tough decision. I did not get my last dose of Erbitux (bc my face looked like it was in a nuclear accident) but I was not given the choice to make it up later. Docs did not seem too concerned. And even though I had to stop radiation 2x due to skin melting off my neck, I did finish those.

    Best,

    Tim