My husband

Jaredamy21
Jaredamy21 Member Posts: 2
My husband was 31 years old when he was diagnosed with his first brain tumor it was a stage 2 oligodendroglioma. I was three months pregrant and I was so scared but they were able to take the size of lemon tumor out and they did chemotherapy and radiation. After a year he was clear and we thought it would never come back but in July 2011 he was rediagnosed with anaplastic oligodendroglioma stage 3 and some it was 4. They started chemo but one part was still growing and so they decide to do gamma knife and on thanksgiving they told us that it was working and the tumor is stable which was the best news ever. He recently had another MRI and it show no change and were they did the gamma knife it has gotten a little smaller. I was a little disappointed but happy that it was not growing. They are thinking about doing another gamma to see if they can get the stable part to start shrinking to. My husband is my world and I love him so much. His oncologist is very hard on us and doesn't look for the best outcomes. They told my husband that he only had 9 months to 1 1/2 to live and the last time he saw him after the good news he told him that it will just grow back. I wish there was a more positive doctor for him out there because of those comments he almost wants to give up and I hate that doctor for doing that. I was in the room when he gave him that news and after telling us that he walk out and never came back. So I am asking if anyone know where my husband could go for more positive out come and where is the best place for good outcomes. I am really thankful for his neurologist because he believes he could get him into remission.

Comments

  • ForHope
    ForHope Member Posts: 16
    What state?
    Hi JareDamy21

    So sorry to hear about your husband. I am on the same road as you are as I'm helping my brother go through GBM IV. There is a saying in my country...'you can't refuse to go to sleep because you are afraid of having a bad dream'. Fortunately doctors can't really predict when exactly a tumor will regrow as everybody has a different timeline. So dont let your husband stop living life to the fullest or fight his tumor the strongest b/c he is afraid of when it's going to comeback. Enjoy everyday, do things that will make him happy and plan your next vacation and the one after like you normally would. The diagnoses has stolen the far future from our lives but it doesn't have to rob us the present, the here and now.

    What state are you in so I can recommend a NO for u

    Best wishes
    ForHope
  • Jaredamy21
    Jaredamy21 Member Posts: 2
    ForHope said:

    What state?
    Hi JareDamy21

    So sorry to hear about your husband. I am on the same road as you are as I'm helping my brother go through GBM IV. There is a saying in my country...'you can't refuse to go to sleep because you are afraid of having a bad dream'. Fortunately doctors can't really predict when exactly a tumor will regrow as everybody has a different timeline. So dont let your husband stop living life to the fullest or fight his tumor the strongest b/c he is afraid of when it's going to comeback. Enjoy everyday, do things that will make him happy and plan your next vacation and the one after like you normally would. The diagnoses has stolen the far future from our lives but it doesn't have to rob us the present, the here and now.

    What state are you in so I can recommend a NO for u

    Best wishes
    ForHope

    State
    We live in Pittsburgh pa.
  • alutiiqmom
    alutiiqmom Member Posts: 256
    ForHope said:

    What state?
    Hi JareDamy21

    So sorry to hear about your husband. I am on the same road as you are as I'm helping my brother go through GBM IV. There is a saying in my country...'you can't refuse to go to sleep because you are afraid of having a bad dream'. Fortunately doctors can't really predict when exactly a tumor will regrow as everybody has a different timeline. So dont let your husband stop living life to the fullest or fight his tumor the strongest b/c he is afraid of when it's going to comeback. Enjoy everyday, do things that will make him happy and plan your next vacation and the one after like you normally would. The diagnoses has stolen the far future from our lives but it doesn't have to rob us the present, the here and now.

    What state are you in so I can recommend a NO for u

    Best wishes
    ForHope

    well said
    Good Morning:
    Thank you for sharing your positive attitude! I like your perspective. Keep living and never give up hope. I think if you read the different blogs on this site one can see that everyone has their own journey on this illness, some medicine works on some, others it doesn't. Keep looking at docs until you find one you are comfortable with. There is a website, unfortunately, I cannot remember which one exactly, I think it is the National Brain Tumor Society, it has a link that gives a break down on hospitals and the ways they treat brain cancer and the number of doctors and the procedures available. I will look on internet and post again after this post. Pray about your decisions and your medical care. God will answer your prayers. I send God's blessings to you and yours.

    Edna
  • ForHope
    ForHope Member Posts: 16

    well said
    Good Morning:
    Thank you for sharing your positive attitude! I like your perspective. Keep living and never give up hope. I think if you read the different blogs on this site one can see that everyone has their own journey on this illness, some medicine works on some, others it doesn't. Keep looking at docs until you find one you are comfortable with. There is a website, unfortunately, I cannot remember which one exactly, I think it is the National Brain Tumor Society, it has a link that gives a break down on hospitals and the ways they treat brain cancer and the number of doctors and the procedures available. I will look on internet and post again after this post. Pray about your decisions and your medical care. God will answer your prayers. I send God's blessings to you and yours.

    Edna

    Thanks
    Yes exactly... Don't stop living and never give up hope.

    The only one I know that's somewhat closer to you is dr Henry Friedman at duke. Has the latest research for the east coast and very approachable. Hope you find someone closer if not try contacting duke.

    Together in hope