Remission! What now?: After several months of... - CLL Support

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Remission! What now?

Smedley54 profile image
20 Replies

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 profile image
Smedley54
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20 Replies
Spacee profile image
Spacee

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 am so, so happy for you!

Linda

UK-Sparky profile image
UK-Sparky

Great news, firstly celebrate! next as said, exercise and diet regime review. eat healthily and moderate exercise and...celebrate again!

UK Sparky

Mystic75 profile image
Mystic75

Congratulations Smedley!! Great news!!

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.

Smedley54 profile image
Smedley54 in reply toMystic75

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...)?

Jacksc06 profile image
Jacksc06

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.

Mystic75 profile image
Mystic75

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.

Big hug,

D.

Smedley54 profile image
Smedley54 in reply toMystic75

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.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

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.

~chris

Smedley54 profile image
Smedley54 in reply toCllcanada

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.

JuciyJ profile image
JuciyJ in reply toCllcanada

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.

Smedley54 profile image
Smedley54 in reply toJuciyJ

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.

Ballyhoo77 profile image
Ballyhoo77

Congratulations enjoy life. Wishing you the very best.

MichelleM61 profile image
MichelleM61

This is Wonderful news! Take is slow and one day at a time and Enjoy life. So Happy for you!

Smedley54 profile image
Smedley54 in reply toMichelleM61

Taking it one day at a time is solid advice I had forgotten! I'm guilty of trying to see too far down the road.

Smedley54 profile image
Smedley54

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.

Smedley54 profile image
Smedley54

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.

leilei profile image
leilei

Wish you very good luck for the treatment!

Smedley54 profile image
Smedley54 in reply toleilei

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.

leilei profile image
leilei

Stay strong! You can go through it.

Canuck901 profile image
Canuck901

Great news! Eating healthy exercise and rest should get you back up to speed

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