I had DLBCL of the brain (CNS involvement) and was treated with high dose chemotherapy for 5 1/2 months. I continue to have headaches, neuropathy, balance issues, memory problems, and immune system illness (rheumatoid arthritis).
God bless you💚💚💚💚
Shelly261,
Hi! I have/had DLBCL stage IV and had treatments of RCHOP chemo. I now have an autoimmune disorder called PMR. I've been on Prednisone now for almost a year. I have to be on it 18mos. Of course with steroids they come with its own set of side effects, weight gain etc. Now I'm also having GERD issues. But, I'm alive and I've been in remission for 2 yrs. I hope you are doing well. Kelly
Hi Shelly,
I had diffuse large-B cell primary CNS lymphoma. I can't do yoga now because I lost my balance, I have memory problems, my walking is horrible. I'm in hospice, and get around with a wheelchair. Just this past week or two, my oncologist told me there's no reason to come back because I used all my cells. But my biggest side effect is my legs, my imbalance, and the need to use a wheelchair. It upsets me that there's nothing I can do. She gave me a new diagnosis called leukoencephalopathy. Sorry I didn't give any uplifting news, but that's all that's recently happening. Take care. Have faith, Love, Kathy
Yes, that's pretty much me too. I don't really know the difference between all the various lymphomas. I'm NHL and 4 years into remission. 6 months of a drug cocktail infused via a chest port (which I had removed soon as I got the all-clear). I would wonder who goes through "similar" chemo and doesn't have long term effects? One of those effects is that I'm still alive so I try not to complain too much. Some side-effects do seem to go away. Others, like my vertigo, pain above my eyes, memory (compounded from age), and heart failure - this last is a result of one of the chemo drugs, nicknamed "red devil". Oh, and my sex drive is back like I'm 30 again and alas I'm quite single/alone. Regarding memory I'm experiencing something pretty unique I think. I've awoken from my past; I've come-to as if awakening from a coma. I find myself looking painfully into my past as if it happened in another lifetime.
Kathy, thank you. I am so grateful for this community. I appreciate each and everyone of you for being vulnerable enough to share your stories and your lives.