Rough time.

[hossbball]

Just got out of hospital after 2 weeks with fungal pneummia. Im neutropenic wbc is 1.6. Platelets are dangerously low. Meeting with my oncology team on Tuesday. Will they start me on new chemo or do they have to wait till my numbers are better. Night sweats are killing me

[AussieNeil Partner Administrator]

Hi Hosbball,

I see this is your first post, though you are a long term member. Given your low WBC and neutropenia, I presume that you have been in treatment for a while? It's obviously working well at reducing your CLL!

Are you aware that because you live in the USA, you are able to request a free video consult with a CLL specialist? Here is the site

cllsociety.org/cll-society-...

Hope it helps you,

Neil

[MsLockYourPosts Passed Volunteer]

Are you in treatment now? If so do your doctors think that the treatment or the pneumonia is causing the low counts? They may want to work on stabilizing your counts before resuming or beginning any treatment.

You would need your team, which has been following your specific case, to decide whether numbers will probably recover best on their own, with something to boost them - blood or platelet transfusions and / or Neulasta / neupogen to boost neutrophils, or with treatment for the CLL itself.

Let us know how Tuesday goes.

[JigFettler Volunteer]

Hi Hossball! Welcome!

Do you know HOW you acquired your FUNGAL Pneumonia?

Nasty episode for you and I do hope your recovery proceeds well

Jig

[hossbball in reply to JigFettler]

My numbers dropped when started on new chemo(oral). My oncologist figured i caught it then

[cajunjeff]

Welcome Hoss. While you will not typically get medical advice on here, you might get some helpful feedback from members who have had similar experiences if you can provide some additional information.

That information might include when were you diagnosed with Cll, what markers you have if you know, what prior treatments you have had and what your platelets and hemoglobin numbers are on your labs.

Your question about “new chemo” implies you have been in treatment before now. With your platelets being dangerously low it seems likely you need some treatment and perhaps a transfusion. The newer treatments are technically not chemo, but that can be confusing.

I am glad you decided to post after you having been a member so long. I do think you might get more helpful feedback if you can share what additional information about your situation you are comfortable sharing with the community here.

[hossbball in reply to cajunjeff]

I was diagnosed in 2006 at age of 40 with cll. Started treatment in 2009, i had iv chemo treatments twice between then and 2014. Was started on trial medication in 2015 and it worked until sept of 2019. Started venetoclax in october brought my numbers down to basicslly nothing, but never improved.

Took me off venetoclax so im not getting treatment now other than platelet transfusions 3 xs a week and a nuesta shot once a week, my numbers dont really go up

[cajunjeff in reply to hossbball]

Hoss, you have had a tough time. It does sound like you are getting cutting edge care though. I am guessing your trial medication was some version of ibrutinib. The next go to drug after ibrutinib is, for many of us, venetoclax. It sounds like venetoclax might have done its job with your Cll, but also your neutrophils.

It’s so very hard to predict what your doctor might do Tuesday. It might be to continue transfusions and neulasta injections to get your body back in shape to tolerate treatment, maybe even restart venetoclax.

I wish I could be more helpful but I would be just guessing. I do hope since you have started posting now you will report back after your visit tomorrow and let us know the plan. I came out of bit of a downward spiral myself when my hemoglobin hit 7 and they were transfusing me. I felt like a guinea pig as they tried different strategies to tune me back up, which they eventually did.

Are you treating with a specialist? It sounds like you are. My only other thought would be a consult at a major cancer center like md anderson, if you are not treating at one already. Good luck tomorrow.

[hossbball in reply to cajunjeff]

My oncologist just set me up for a bone marrow biopsy. He is concerned it's myleodysplasea(not sure if i spelled that correctly) 3 scenarios he presnted me with.

1. It was toxicity from venetoclax and my pnemonia.

2. My bone marrow isnt work Isnt producing enough good cells, which he thinks will need bone marrow transplant

3. Is myleodysplasea. Which would need bonemarrow transplant and other treatments.

So lets hope for #1 scenario. On a good note my platelets are up to 30000. Lets hope they continue to climb