After several months of chemotherapy my latest bone marrow biopsy came back cancer free! It left me with psoriasis and eczema that is beginning to clear up after some persuasion, but blood tests are still a mess. How do you rebuild your health and resume a more normal life?
I'm blessed enough to be ready for a new normal, but what are the guideposts?
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Smedley54
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Congratulation!!!!! Don’t know too much to offer but I would start an slow exercise program. Walking is one place. You could even start with a physical therapist, maybe.
I can only echo what has already been posted. This is a bridge my husband and I haven't crossed yet so I am curious if the CLL specialist or physician provides direction on what are the next steps after you are in remission.
It seems that oncologists treat cancer, so once you're cancer free they lose interest. In my case chemo brain is real, and psychologically there was a period of realizing the thing I had been fighting was behind me while there was a new challenge right in front of me. Funny, but I don't remember anyone mentioning this part or explaining how to recover from the cure.
First, stamina and mental clarity are much less than two years ago, before anemia began to gnaw away at me. Diet and exercise are always the right cures for whatever ails you, so that's the path I'm trying to follow, so walking, and then the little I have found on this recommends more fruits and vegetables - something I'm still working on since nobody under this roof has had time or energy to cook this millennia.
Second, how hard can I push? There are limits - I'm still immune compromised - but what else? Can I safely continue graduate studies (after the current medical bills are settled...)?
Very pleased for you. I fully sympathise with you regarding fatigue & Chemo brain. A good diet & exercise ( mental & physical) are a good place to start. Best wishes going forward.
I wish I could offer some solutions for you but unfortunately I'm a babe in the woods, with a lot more ahead of me (and my husband) than what we have gone through so far....but I can certainly see the issues here. If it were me, I would be tempted to reach out to another specialist for some input. Hope you can get this resolved soon and be able to focus on your recovery.
As treatments improve, more people will have the blessing of this particular challenge! I keep thinking that surely someone can help me through this, but right now I'm winging it.
Glad you are MRD negative in the marrow.. it bodes well for remission longevity... quite hard to get in fact. What therapy did you have and how many cycles?
It takes time for your immune system to normalise, and depending on your treatment it can be supressed for quite some time... CD4 T cells for example can take a year for levels to rise...
Why are your blood test a mess? I'm unclear what you are refering too...
Good advice has already been given.. good diet, daily exercise, reduce stress and sleep well... smell the roses.
More specifically, red cell counts are low, cortisol is high, and glucose is routinely 60-150 points higher than usual (Type II diabetic, previously well controlled) just to name a few. Other values are off consistent with the low red cell count, but I hope things will normalize given time.
Therapy included IViG as needed, Leukeran (chlorambucil) at 15-day intervals for six doses, and Gazyva for six doses (first three doses at 15-day intervals, and three doses at 30 dose intervals). I got to keep my hair, but I did lose my mind.
Just had mine done last week. It came back "less than 1". Didn't think to ask if that means MRD negative but she said those were good results. My treatment was BR. I am mostly dealing with muscl soreness and low platelets. I get a nPlate shot once a week so not sure if the soreness is the chem from Jan, last of 6 treatments, or the nPlate.
It sounds like you've had a good outcome! I probably asked the same question, "What does this mean?", five different ways and the oncologists' specific replies were "No cancer cells" and "remission". Even after chemo that answer was unexpected, so I wanted to be sure I understood what he was saying.
I'm going to post this update as a warning to others that even when it's over, it's still not over.
A rash that dogged me for three months was diagnosed as eczema and psoriasis with attendant psoriatic arthritis. Treatment for that has been a ridiculously expensive cream and a patient wife.
Low red cell counts became bad enough for more Aranesp, and IGG fell far enough for treatment with IViG. My emotional reaction to these developments was a surprise - I've been really upset that remission of the cancer is one thing while rebuilding an independently functional body is another. "Remission" and "well" are entirely different things, and somehow this surprised me. I'm still very sick and denial is less helpful than - apparently - I hoped.
Today I was diagnosed with AML - Acute Myeloid Leukemia - and tomorrow I enter the hospital for five days of chemo and three weeks of monitoring and treatment.
Unfortunately, I'm hospitalized for at least the next three weeks receiving chemo and follow-up care for AML. It's a bad sign when your oncologist calls after hours and wants to know how soon you can check into the hospital.
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