Good news, bad news

taraHK
taraHK Member Posts: 1,952

The good news is that the result of the test is back and I am a candidate for Temozolomide (= Temodar = TMZ). That doesn't mean it's going to "work" -- but the test identifies those for whom it will NOT work. 

As some of you know, I actually had one cycle already, while I was waiting for the results. I didn't want to be on no chemo for very long, and the side effects of TMZ are pretty mild. 

The bad news is that my CEA is WAY up. Above 300. I have never had numbers like that. And, my symptoms have gotten a little worse (pain in shoulder and left hip). I may have some radiation to reduce pain in either one or both but decided to postpone -- because I have a really good friend coming to visit me next week and I want to be able to PLAY!

Just got back from a one week holiday in Hawaii so I really can't complain about anything right now! I was able to take gentle walks most days, go out to eat, bit of shopping -- and a lot of sitting and talking with ones I love. 

Just had cycle #2 of TMZ yesterday -- side effects not bad at all. As some of you are no doubt aware, this is a drug traditionally used with brain cancer but now having some success with colorectal cancer patients -- not sure if much published yet

Tara

Comments

  • manwithnoname
    manwithnoname Member Posts: 402
    I know

    TMZ hope it works for you, FYI there has been a trial with Metformin + TMZ;


    "New drugs and targeted molecular therapies are important for future therapeutics, but sometimes we must not exclude drugs already used in the clinic that might have remarkable results. Such is the case of metformin, a drug used for decades in the treatment of type 2 diabetes mellitus that has proven to enhance the effect of TMZ in the treatment of breast cancer and, starting with this paper, of brain cancer."

    Just sayin...


  • janderson1964
    janderson1964 Member Posts: 2,215
    I pray this works for you.

    I pray this works for you.

  • Maxiecat
    Maxiecat Member Posts: 544
    I am sorry to hear that you

    I am sorry to hear that you are in pain and that your CEA is going up.   Hopefully this new treatment plan will do the trick.  I am glad to hear that the side effects of TMZ are minimal.  How many cycles are you scheduled to do?

    alex

  • taraHK
    taraHK Member Posts: 1,952
    Maxiecat said:

    I am sorry to hear that you

    I am sorry to hear that you are in pain and that your CEA is going up.   Hopefully this new treatment plan will do the trick.  I am glad to hear that the side effects of TMZ are minimal.  How many cycles are you scheduled to do?

    alex

    don't know

    Hi Alex - thanks for your warm words. I'm not sure how many cycles I'll be having. I usually have a PET scan after every 4 cycles. But this drug is taken just once a month. I guess I'll keep taking it so long as it "works" (in my case, stable = good!) or until something better comes along. 

    Tara

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Good luck Tara...hope it
    Good luck Tara...hope it works and you feel well. Have fun with your friend next week!
  • annalexandria
    annalexandria Member Posts: 2,571
    I'm so glad you got to go to HI!

    What a wonderful place for rest and healing.  And I'm glad to hear you still have treatment options.  You really are an inspiration to everybody on this board.  Please keep us posted and let us know how the new drug works out for you.  Sending hugs from Seattle~AA

  • pepebcn
    pepebcn Member Posts: 6,331

    I'm so glad you got to go to HI!

    What a wonderful place for rest and healing.  And I'm glad to hear you still have treatment options.  You really are an inspiration to everybody on this board.  Please keep us posted and let us know how the new drug works out for you.  Sending hugs from Seattle~AA

    Praying for good results on your new
    Scheme Tara! Hugs!
  • devotion10
    devotion10 Member Posts: 623
    Tara ... great news regarding the TMZ

    so glad that you are a candidate and can continue.  Keep reporting in on what the side effects are for you; hope that they continue to be mild.  I love your attitude and your desire to PLAY ... traveling, walking, going out, shopping, being social ... just wonderful.  The high CEA is concerning and so are the worsening symptoms but it sounds like you have the radiation option and also the potential for the TMZ to bring those numbers down.  I wish you the best. -- Cynthia

  • Deena11
    Deena11 Member Posts: 199
    Good luck!

    Good luck with the new treatment!!  Have fun with your friend. 

  • k44454445
    k44454445 Member Posts: 494
    good luck!

    i hope this works for you. that is great you could go to hawaii. prayers for you.

    hugs

    judy

  • YoVita
    YoVita Member Posts: 590
    Hope the TMZ helps

    I'm so glad you got to have your Hawaiian holiday. 

  • Moesimo
    Moesimo Member Posts: 1,072
    Sending HUGS!!!!!+

    Tara,

    I am glad you had a great vacation.  I am sending hugs and prayers that you can get some relief from the pain.  You are such a brave woman.  I will never forget how helpful you were to me during my early days of treatment.  I will always remember your kindness.

    Love,  MaureenSmile

  • thingy45
    thingy45 Member Posts: 632
    Moesimo said:

    Sending HUGS!!!!!+

    Tara,

    I am glad you had a great vacation.  I am sending hugs and prayers that you can get some relief from the pain.  You are such a brave woman.  I will never forget how helpful you were to me during my early days of treatment.  I will always remember your kindness.

    Love,  MaureenSmile

    Hope

    I so hope it works for you. Great you had a nice vacation and a good visit with your friend.

    Hugs, Marjan