Second opinion-Don't take a permanent job.

My son was diagnosed with an Astrocytoma in 1/11. He has since then lived his life despite several more tumors and ongoing treatment. Changed his Chemo from Temodar to an infusion type several months ago and it has done nothing but kicked his ass. He wanted to quit, but wanted to live. He has been being treated at Roswell Park Cancer Institute. Today, he was in at Sloan-Kettering for a second opinion. They told him to stop the Chemo as it has only had 10% benefit and to not take a "permanent job." He just graduated from college. They told him that he would be losing his thinking ability and his bladder function.
His sister lives in nyc and they went together. I think the world of both of them and decided not to hover. He called me after the appointment and told me everything. He told me that he was glad that they explained it as he had been having trouble with his bladder. I love his Doc here but feel blindsided by this news. My son asked me "What do you think?" I told him that when he got home that we would do some planning and that I thought the time was now." He agreed. He says he is done with the Chemo. I told him that I am with him on that.
I'm glad for a day before he gets home. I need a day to cry and get it together. I am not sure if he will want to still look for a cure or what. We will talk when he gets home about what he wants.
If any of you kids could give me some insight or thoughts about how I should support him, I would greatly appreciate it.
Sorry- Not that clear tonight.
Jo

Comments

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  • Just be there for him in whatever capacity he wants. Sounds like you have solid communication with him. Keep that going. Give him some space, but keep in mind that as his function declines, you may need to keep him under closer watch...and he might not appreciate that at first.

    I also would not give up on finding different treatment options. There are other excellent cancer treatment facilities that may offer something different. I have a friend who did a whirlwind tour by visiting Dana Farber, Sloan-Kettering, MD Anderson, and one or two others I don't recall.
  • mtbikernate;8570 said:
    Just be there for him in whatever capacity he wants. Sounds like you have solid communication with him. Keep that going. Give him some space, but keep in mind that as his function declines, you may need to keep him under closer watch...and he might not appreciate that at first.

    I also would not give up on finding different treatment options. There are other excellent cancer treatment facilities that may offer something different. I have a friend who did a whirlwind tour by visiting Dana Farber, Sloan-Kettering, MD Anderson, and one or two others I don't recall.
    Thanks Nate. I really did appreciate you for pointing out what I "CAN" do for him. I was feeling so helpless. After he got back in town, we talked about what he wanted to do. This morning we had an appt. with his Doc here to go over the second opinion stuff. Much to our surprise and (quite frankly joy!) , he was much more positive and hopeful than the Doc in nyc. He said that while he could see where she was coming from, she only had a "snapshot" of my son and does not know the whole picture. He went on to say that my son's tumors have always responded to treatment and that my son has always bounced back. He discussed a change in his Chemo and explained why. My son had wanted to quit the Chemo, but decided that this plan makes sense and seems into it. The Doc also said that he did not think that my son would be having the difficulties that she described within months as she had predicted. He is trying to be very careful to protect my son's quality of life and clearly my son and I are on the same train. After, the appointment, I could tell that we both felt a little better. He gave us some hope and as you know, it is so powerful. On the way home, he started talking about a project that he wants to start and I could see that spark back! At least we have something possible, and I am a pretty grateful Mom right now.
    PS- His Doc did his Residency at MD Anderson, and had already sent my son's stuff to a friend of his to see if there were any clinical trials etc. One thing about my son's Doc, is that he would send Dave anywhere if he thought they could help him. It was his idea for Dave to go to SK and he set the whole thing up.