Supportive wife

[Cb1391]

Hi there! My husband was diagnosed with CLL in 2015. He had zero issues, I was just concerned about esophageal issues (burping) and requested a 50-year full physical so we could get a scope.

Within two weeks my husband had diagnosis for esophageal cancer at GE junction (14% survival rate) and CLL.

Praise God, our healer, he is 8 years out from esophageal cancer, but his CLL has progressed.

My husband feels fine. He’s very active (works full-time in construction, rides his Harley, hunts, etc) with no pain, but I see he’s more fatigued than he realizes from the extreme anemia.

We have invested in alternative therapies, but my concern is low platelets.

[AussieNeil Partner Administrator]

Hi Cb1391 and welcome to our community,

I see that you have posted/replied elsewhere:

healthunlocked.com/cllsuppo...

and healthunlocked.com/cllsuppo...

Low platelets (typically dropping under 100), is an indication for starting treatment and I see that your husband's doctor has recommended starting on acalabrutinib. That is a good treatment option for CLL for which there is plenty of experience. I've replied in detail to your post about acalabrutinib, which I've had for my CLL treatment.

Neil

[Cb1391 in reply to AussieNeil]

Thanks Neil. I’m new to this site and trying to figure the format so I apologize for duplicative posts! I actually thought the first was a required bio. 🥸

[AussieNeil Partner Administrator in reply to Cb1391]

It's certainly a good idea to introduce yourself in a first post, thanks Thankfully on HealthUnlocked, we have the added advantage of being able to maintain our bio, which can be quickly accessed by others, simply by selecting the poster's bio avatar/name adjacent to their post/reply. You can populate your bio via this quick link healthunlocked.com/profile/...

We have a collection of our most helpful posts in our Pinned Post section here:

healthunlocked.com/cllsuppo...

It includes this post on Navigating HealthUnlocked. healthunlocked.com/cllsuppo...

Welcome to our community!

Neil

[Blue-bird_ in reply to AussieNeil]

My partner is almost 1 year post auto transplant for CNS lymphoma. He also has CLL, but has had clean BMBs since August 2022. His platelets are still below 20, sometimes rising to high 20s.

He hasn't needed a transfusion in a couple months but his counts just haven't improved. Hb is in the 80s to low 100s more recently and neutrophils finally rose above 3 last month without gsf. Is this common?

His consultant seems reluctant to give us a straight answer to this for some reason.

[AussieNeil Partner Administrator in reply to Blue-bird_]

I can't comment about other lymphomas, but there is a CRi (Complete Response with incomplete recovery category), specifically for such situations. Some people with CLL do end up waiting for months or years or indeed indefinitely for their blood counts to recover so that they are all within normal ranges. It's less of an issue with modern targeted therapies, particularly if someone has not had many prior therapies. If you are interested, clinical trial study reports can include actual numbers/percentages.

It appears that your partner's bone marrow is still gradually improving, giving he hasn't needed a transfusion in a couple of months and his neutrophils are doing quite well now without G-CSF.

Neil

[Blue-bird_ in reply to AussieNeil]

Just wanted to come back and update this thread. My partner's hb in December was 122 and platelets 77! Which we haven't seen since he was taking gcsf for his stem cell harvest. We're very pleased that he has gotten these numbers all on his own after everything his bone marrow have been through.

I did start giving him high dose B12 in June, at which he stopped needing blood transfusions. But counts were still low. I added D3, vitamin K and calcium, in addition to potassium, magnesium and 100% iron he was already taking. That's when started to see a steady improvement in his counts.

It is entirely possible that his bone marrow would've improved on its own over time, but when I when I stopped his B12 one week, he need a transfusion immediately afterwards. I started it again, and he hasn't had a transfusion since.

I stopped it because I asked his consultant whether it was safe to give him high dose b12, so his consultant checked his b12 in his next blood test. It was indeed about 700, so I stopped giving it to him to see if it would make a difference. When his next hb was was in the 70s on his next blood test, I decided I would keep giving him the high dose b12, but only every other day to keep the amount in his blood low.

His b12 and folate are still quite high, but his consultant is aware that he is taking supplements and will let us know if the result is concerning. It will be high because his bone marrow isn't working efficiently, but as long as he stays hydrated and flushes out the excess supplements, it's fine for him to keep taking them with his doctor supervising the blood tests.

I just wanted to mention in case anyone else was considering trying b12. Only anecdotal evidence, but I thought it was an interesting coincidence and wondered whether anyone else has had similar experiences with supplements.

[naturallady]

Hello, Since you are open to alternative therapies, try Standard Process sesame seed oil gel caps , husband with cll uses 2 three times a day and FloridaHerbal Pharmacy,papaya leaf, 1 three times a day. Really helped him, will not happen instantly, takes a little time for max benefit. Dont usually say anything because natural things are not really accepted on this site.normally put down quickly. Good Luck.

[naturallady]

my message was dealing with his low platelets. Forgot to say that.