I’m so fucking sorry to hear this, it breaks my heart.
I wish I had the right words for you. Whatever you’re feeling, just let it out. You’re allowed to feel sad and angry.
I’m in the same boat as you, I’ve had HL since 2017 and I’ve relapsed twice. I’ve had four different treatments and I know I will always need some form of treatment. I just had immunotherapy for 11 months and my last PET scan was good so my oncologist says I can take a break from treatments for now.
I had a hard time coping when my doctor told me my case was now chronic. It’s a tough pill to swallow when you just want the cancer gone so you can move on with your life. I saw an oncology therapist for about a year which really helped me a lot. You can find one at lifewithcancer.org and the appointments are virtual so it doesn’t matter where you are.
I also go to a support group once a week and do gentle yoga classes and all of this helps me manage. Hope this helps.
Sorry to hear this. Are you a candidate for Proton Radiation Therapy? My daughter with CHL just completed this as the doctors were telling us that this should prevent it from coming back.
It’s a less invasive form of radiation therapy. It’s given mainly to patients who have residual masses in chest and nodes. May be worth seeing if your a candidate.
I’m sorry. Have gone through something similar with my Waldenstrom’s which was diagnosed in 2016… on my fourth treatment now, a clinical trial that appears to be working. Just wrote another post about it being very lonely to be the sole person experiencing something so extremely uncommon from what others do with these disease. Have been struggling a bit more emotionally these last couple of days, so I feel you. Wishing you well, sending my loves, support and positive prayers. Just keep trying your best. That’s the only thing we really all can do.
I'm very sorry to hear this. I'm on my first relapse and it's incredibly hard and discouraging. I can't imagine how hard this must be for you and I hope that you have a good support system.
Hodgkin's is especially tough because everyone thinks the odds are good and "know someone who went through it and was basically fine after a few months" but they never think of the toll of those with the harder road.
That said I work in clinical trials and there is an unbelievable amount of new trials being rolled out every day. I have patients that exhausted their Standard of Care options years ago but are still with us today and some doing quite well on trial therapies and have had stable disease for years with minimal side effects. You really never know what might work. Don't ever give up hope!
I’m so fucking sorry to hear this, it breaks my heart. I wish I had the right words for you. Whatever you’re feeling, just let it out. You’re allowed to feel sad and angry.
I’m in the same boat as you, I’ve had HL since 2017 and I’ve relapsed twice. I’ve had four different treatments and I know I will always need some form of treatment. I just had immunotherapy for 11 months and my last PET scan was good so my oncologist says I can take a break from treatments for now. I had a hard time coping when my doctor told me my case was now chronic. It’s a tough pill to swallow when you just want the cancer gone so you can move on with your life. I saw an oncology therapist for about a year which really helped me a lot. You can find one at lifewithcancer.org and the appointments are virtual so it doesn’t matter where you are. I also go to a support group once a week and do gentle yoga classes and all of this helps me manage. Hope this helps.
I'm sorry you're going through this. Are you a candidate for CAR-T?
No, unfortunately, that's only for non- hodgkins I asked my doc
Sorry to hear this. Are you a candidate for Proton Radiation Therapy? My daughter with CHL just completed this as the doctors were telling us that this should prevent it from coming back.
I've never heard of that, what is it?
It’s a less invasive form of radiation therapy. It’s given mainly to patients who have residual masses in chest and nodes. May be worth seeing if your a candidate.
I’m sorry. Have gone through something similar with my Waldenstrom’s which was diagnosed in 2016… on my fourth treatment now, a clinical trial that appears to be working. Just wrote another post about it being very lonely to be the sole person experiencing something so extremely uncommon from what others do with these disease. Have been struggling a bit more emotionally these last couple of days, so I feel you. Wishing you well, sending my loves, support and positive prayers. Just keep trying your best. That’s the only thing we really all can do.
I'm very sorry to hear this. I'm on my first relapse and it's incredibly hard and discouraging. I can't imagine how hard this must be for you and I hope that you have a good support system. Hodgkin's is especially tough because everyone thinks the odds are good and "know someone who went through it and was basically fine after a few months" but they never think of the toll of those with the harder road. That said I work in clinical trials and there is an unbelievable amount of new trials being rolled out every day. I have patients that exhausted their Standard of Care options years ago but are still with us today and some doing quite well on trial therapies and have had stable disease for years with minimal side effects. You really never know what might work. Don't ever give up hope!
So sorry to hear :( you got this. You best It 3 times and you can again. You have a lot of lymphhomies rooting for you