New bloodwork

[Floridagirl49]

New bloodwork looks hopeful. I realize that wbc can go up or down with this cruel disease... but my hubbys has dropped by 24000 in 5 weeks. The lump abs has also dropped from 50 to 27. Platelets came up a bit... we still to get those RBCs up a bit but they were only a bit below normal. The doctor recommends treatment of platelets fall to less than 100 but they had gone up to 125. Do these look hopeful? His lymph nodes under his right arm are totally gone, others have shrunk but some still remain in neck. She really pushed a ct scan but I just don’t think we are ready yet.

[Cllcanada Top Poster CURE Hero]

I think a CTscan might be a wise idea... soonish... good to have a look inside and see what is happening...

A scan started my treatment... CLL was effecting my heart and kidney. Bloodwork tells a portion of the story, its not the full book...

~chris 🇨🇦

[Floridagirl49 in reply to Cllcanada]

Did you have symptoms?

[Cllcanada Top Poster CURE Hero in reply to Floridagirl49]

No I felt great... walking 2-3 kms everyday... absolute lymphocyte count [ALC] was in the mid 80's. Platelet were just low range HgB was fine etc...

~chris 🇨🇦

[Floridagirl49 in reply to Cllcanada]

His lymph abs is 27 ... did you do anything else except conventional treatment? If bloodwork keeps improving we may hold off but if it’s looks like a stagnation, we might go for it.

[Cllcanada Top Poster CURE Hero in reply to Floridagirl49]

I had a regression.. my absolute lymphocyte count [ALC] dropped from 136K to 42K, primarily exercise a weight loss as a result... then it started to rise again...

I cooked everything from scratch, so could control sodium levels etc... , but food changing CLL counts is more myth than fact, IMHO.

CLL is a very dynamic situation, quite often it doesn't follow typical guideline paths...

~chris 🇨🇦

[Floridagirl49 in reply to Cllcanada]

Thanks Chris.. every story I hear and article I read helps us. I really wish you much success in as my sixteen year old says “ kicking cancers butt!” 😂

[Cllcanada Top Poster CURE Hero in reply to Floridagirl49]

Thanks, regrettably my cancer butt kicking days are over... 😔

[Floridagirl49 in reply to Cllcanada]

😢

[Hidden]

as my doctor says its the trends. if most are going in the right direction-both the one that were too high and the ones that were too low thats good

[Hidden]

nothing wrong with a ct scan. whats there is there

[Floridagirl49 in reply to Hidden]

I hate the radiation in fact I read radiation as a child has been linked to CLL.

[Floridagirl49 in reply to Floridagirl49]

My hubby had xrays, a ct scan and probably more .

[Floridagirl49 in reply to Floridagirl49]

I’m not sure if he had a ct scan as I think the technology was raw back then but something radiology to his head.

[MsLockYourPosts Passed Volunteer]

Considering treatment if platelets fall under 100 would surprise me, if there weren’t other things going on. I think that I would have the scan done to have a baseline since it sounds like your husband has more of an SLL (nodal) presentation. Starting treatment too early would bother me more than a scan. While none of us need all of the scans that used to be routine, I think that we have to be careful about over reacting about the whole radiation issue. There is a place for scans used responsibly.

[AussieNeil Partner Administrator in reply to MsLockYourPosts]

In the Primary Treatment Decisions section of the latest iWCLL Guidelines the relevant phrasing is: "Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cut-off levels of Hb < 10 g/dl or platelet counts of <100.000/μl are generally regarded as indication for treatment. However, it should be pointed out that in some patients platelet counts of < 100.000/μl may remain stable over a long-period of time; this situation does not automatically require therapeutic intervention." (My emphasis)

[Floridagirl49 in reply to AussieNeil]

TY

[MsLockYourPosts Passed Volunteer in reply to AussieNeil]

Thanks for the clarification, Neil. I know people who’s platelets just sit low. I would want the most complete picture possible if considering treatment again for myself, though hopefully that wouldn’t involve biopsies of any organs. Needles, scans, BMB - no problem. But the best way to turn me into an irrational mess is to say kidney biopsy.