last treatment for a while

snommintj
snommintj Member Posts: 601
edited March 2014 in Colorectal Cancer #1
I just got my pump off. I finished my 3rd treatment, everything seems fine. I have that metallic taste in my mouth, a slight sensitivity to cold. The cold sensitivity was really diminished this time by the calcium and magnesium. I have a PET/Ct next week to see where I stand. I think I have responded well. My CEA fell from 90 to 50 after only two treatments. I had originally planned to have surgery in 6 weeks from today. I am taking 4 weeks off and entering a clinical trial for fostamatinib. I will be monitored weekly to see if it's working. If it's not working then my surgery shouldn't be delayed more than a week or so. If it does work, then I will stay on it and perhaps not need surgery for some time. There are people that have been taking it for over a year with little to no side effects and it has stabilized or reversed their disease. I hope all of you out there are doing well and are looking forward to one day being rid of this disease.

Comments

  • lisa42
    lisa42 Member Posts: 3,625
    fostamatinib
    Hi John,

    Can you tell us more about this trial drug? Is it new or just new to being tested for colorectal cancer? I always like to know options that are out there. I'm glad to hear you responded well to the other treatment you just had- let us know the outcome of your scan when you get it done.

    Best wishes and take care,
    Lisa
  • Julie 44
    Julie 44 Member Posts: 476 Member
    lisa42 said:

    fostamatinib
    Hi John,

    Can you tell us more about this trial drug? Is it new or just new to being tested for colorectal cancer? I always like to know options that are out there. I'm glad to hear you responded well to the other treatment you just had- let us know the outcome of your scan when you get it done.

    Best wishes and take care,
    Lisa

    Best of luck
    John,
    Good luck on your scans and with the test trial..I agree with Lisa can you fill us in on this drug???Always need to be on top of things..Knowledge is power....................JULIE
  • PhillieG
    PhillieG Member Posts: 4,866
    Sounds like a sound plan
    Good luck with it John.
    -phil
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Treatment
    Sounds like you are coming along really well. I am happy that you seem to be responding good. You have been through so much so maybe this new treatment is exactly what you needed. What are you on anyway? You said sensitive to cold and I only thought that was with the oxy, but I guess not. Let us know on the surgery.

    Kim
  • Fight for my love
    Fight for my love Member Posts: 1,522
    Hi John,it is good to hear
    Hi John,it is good to hear that you responsed well to the treatment.Best luck on your scan and let us know when the result comes out.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Good News
    All to the best to you, John
    I'll be curious as to how the trial works out for you.

    -Craig
  • donnare
    donnare Member Posts: 266
    lisa42 said:

    fostamatinib
    Hi John,

    Can you tell us more about this trial drug? Is it new or just new to being tested for colorectal cancer? I always like to know options that are out there. I'm glad to hear you responded well to the other treatment you just had- let us know the outcome of your scan when you get it done.

    Best wishes and take care,
    Lisa

    Good luck
    Hi John,

    Good luck with the scans and the trial. Let us know how you are doing.

    All the best,
    Donna
  • eric38
    eric38 Member Posts: 583
    Sundanceh said:

    Good News
    All to the best to you, John
    I'll be curious as to how the trial works out for you.

    -Craig

    John - Thanks for all the
    John - Thanks for all the good information you have given and continue to give us. You have been through the ringer so I am hoping and praying that you will be doing the naked happy dance soon.

    Eric
  • betina61
    betina61 Member Posts: 642
    Praying for the best results
    Praying for the best results for you, you deserve some goof news.
  • betina61
    betina61 Member Posts: 642
    Sorry with the spelling
    I mean some GOOD NEWS.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Glad for you
    John,

    That's FABULOUS! I hope this new trial will be just what you need. You deserve a break from this mess.

    *hugs*
    Gail
  • punch_vj
    punch_vj Member Posts: 88
    Nothing Like a Plan...
    You are so empowered and resourceful! you also you make the rest of us all feel it too. It is the strength and cornerstone of your healing. You are in my prayers for continued healing.

    V.
  • elizabethgd
    elizabethgd Member Posts: 145
    punch_vj said:

    Nothing Like a Plan...
    You are so empowered and resourceful! you also you make the rest of us all feel it too. It is the strength and cornerstone of your healing. You are in my prayers for continued healing.

    V.

    good luck
    Good luck with the scans and trials. Hope things continue to improve...You are such a strong person full of conviction and courage....You are in my thoughts and prayers..
  • Paula G.
    Paula G. Member Posts: 596
    Good Luck
    Good luck John! Keep us posted on how you are doing. I haven't heard of this clinical trial but this entire thing is new to us. It is people like you that do these clinical trials that give so many of us hope.
    I hope that there will be options down the road of my husband like this. Having been a part of clinical trials myself (not for cancer) they do treat you pretty good and monitor people very close.
    I hope you will be one of the ones that reverse their disease.Paula G.
  • dixchi
    dixchi Member Posts: 431
    Paula G. said:

    Good Luck
    Good luck John! Keep us posted on how you are doing. I haven't heard of this clinical trial but this entire thing is new to us. It is people like you that do these clinical trials that give so many of us hope.
    I hope that there will be options down the road of my husband like this. Having been a part of clinical trials myself (not for cancer) they do treat you pretty good and monitor people very close.
    I hope you will be one of the ones that reverse their disease.Paula G.

    Hoping for the Best
    Hope the clinical trial is successful and am glad
    you are doing ok so far. Appreciate your
    willingness to try one of the trials; it helps
    all the rest of us in our battles.

    Huggs,
    Barbara