Official Results

mrou50
mrou50 Member Posts: 389 Member

I thought I would update everyone on the official results of my CT scan, post what my primary care physician told me.  My ONC confirmed what my primary said (I did not tell him I knew) The mets are growing again, and quickly.  There are several forming up on my lungs with one that is already grown 3 cm in three months, my lymph nodes are swelling and it is suspected but not cofirmed that the cancer has reached the lymph nodes.  He suspects the mass forming in my trachea is cancer, but again not confirmed yet.  He is sending me to a pulmonary specialist to confirm this, and to stop the bleeding in my throat which he suspect is coming from the mass, he said that is done with a lazer ablasion, I believe that is the term he used.  So we are officially stopping Votrient, we got 11 months out of it and we are going to try Opdiva, he did say that Opdiva is typically good for only 4 to 5 months on average, although he said some have gotten more time out of it based on the results of the trials.  So twice a month I have to drive to Portland (4 hours) from my home and do the treatment, and then he said this summer he would like to start IL2 while I am still strong enough to hack it.  

Long story short we move on and try new and better things for my body.

 

Mark

Comments

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Thanks for the update, Mark.

    Thanks for the update, Mark. Did your doctor say anything about other surgery (for the lungs, perhaps?) It sounds like he has a plan in place for medication. There have been some good results with the ones mentioned.

    Thinking about you.

    Hugs

    Jojo

  • Bonngo
    Bonngo Member Posts: 79
    So sorry to hear this. Hoping

    So sorry to hear this. Hoping for the very best for you with the new treatment. 

    ~Bonnie

  • foxhd
    foxhd Member Posts: 3,181 Member
    Bonngo said:

    So sorry to hear this. Hoping

    So sorry to hear this. Hoping for the very best for you with the new treatment. 

    ~Bonnie

    keep plugging Mark

    Stay strong. For me the Il-2 may have been the hardest part of my cancer. Tortuous and inhumane. Remained a bit psychotic for a couple months with about a 40# wt. loss. And I was very fit. I met a guy who just finished his Il-2 a couple weeks before me. He had no issues with it at all and returned to the gym in a week. May you do the same when the time comes. I had not heard of the nivo failing after such a short time. Unless it never worked. Nivo is what saved my life several years ago. 18 months of bliss. I was almost cured but bumped from the trial and started the Il-2. It kept me stable for another year. But time goes on...Now I expect to be taken off votrient shortly. I am pushing to return to nivo. Oh how I am sick of side effects and feeling crappy. I think footsie and I have been sick enough for everyone. We need a break. Keep the new drugs coming. Maybe when you reach 5 years all the bugs will have been worked out and you won't need any other treatments.

  • nancybuck
    nancybuck Member Posts: 117
    Moving on

    I am so sorry to hear that things are not going well for you on your current regime.  Now it on to a new and hopefully, better option for you.

    Prayers are coming your way Mark.

     

    Nancy

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    nancybuck said:

    Moving on

    I am so sorry to hear that things are not going well for you on your current regime.  Now it on to a new and hopefully, better option for you.

    Prayers are coming your way Mark.

     

    Nancy

    Thanks for the update, Mark.

    Thanks for the update, Mark. Sorry for what you are facing, BUT know that we are on this journey along side you.

    Please hang on, a day at a time,  an hour? Whatever it takes Mark! We'll be there with you!

    Sending you healing hugs for comfort and serenity~

    Jan

  • cakelady
    cakelady Member Posts: 63
    Good Luck!

    May the new year bring good news and successful treatment!

  • mrou50
    mrou50 Member Posts: 389 Member
    Jojo61 said:

    Thanks for the update, Mark.

    Thanks for the update, Mark. Did your doctor say anything about other surgery (for the lungs, perhaps?) It sounds like he has a plan in place for medication. There have been some good results with the ones mentioned.

    Thinking about you.

    Hugs

    Jojo

    Surgery

    He has not mentioned surgery at all, he does not like to do surgery unless absolutely necessary. He likes to try medications first and see if they will work.  I think once I get the results back from the pulmonary specialist we will discuss further options.

     

    Mark

  • mrou50
    mrou50 Member Posts: 389 Member
    foxhd said:

    keep plugging Mark

    Stay strong. For me the Il-2 may have been the hardest part of my cancer. Tortuous and inhumane. Remained a bit psychotic for a couple months with about a 40# wt. loss. And I was very fit. I met a guy who just finished his Il-2 a couple weeks before me. He had no issues with it at all and returned to the gym in a week. May you do the same when the time comes. I had not heard of the nivo failing after such a short time. Unless it never worked. Nivo is what saved my life several years ago. 18 months of bliss. I was almost cured but bumped from the trial and started the Il-2. It kept me stable for another year. But time goes on...Now I expect to be taken off votrient shortly. I am pushing to return to nivo. Oh how I am sick of side effects and feeling crappy. I think footsie and I have been sick enough for everyone. We need a break. Keep the new drugs coming. Maybe when you reach 5 years all the bugs will have been worked out and you won't need any other treatments.

    Opdivo

    In regards to the Opdivo's timeline I was surprised as well he showed me the article as we were sitting there.  He also said though that it has worked longer in others it is just a matter of how the body and the cancer respond. I am hoping for 18 months like you got Fox because I am not to thrilled about IL2 at all.  

  • marosa
    marosa Member Posts: 334 Member
    cakelady said:

    Good Luck!

    May the new year bring good news and successful treatment!

    Backing up all these well wishes!

    Wishing you a succesful treatment Mark!

  • cheatinlil
    cheatinlil Member Posts: 197
    marosa said:

    Backing up all these well wishes!

    Wishing you a succesful treatment Mark!

    Mark

    Mark,

    I'm sending positive thoughts your way on your new treatment. 

  • Pandabear1011
    Pandabear1011 Member Posts: 123 Member
    Good Luck with the Opdivo...

    Happy New Year, Mark! Sending good vibes your way for positive results from the Opdivo. I've read quite a few inspiring Opdivo patient stories. Some people achieved complete remission ! Amazing!