Good news and Bad news?

[bertie260]

( IGHV mutated, No 17P or TP53 deletion and borderline for 13Q 6.5% and W&W for 18 years) I recently had bloods drawn and to my surprise WBC went down from 29K to 24K and Hgb is holding steady at between 10.5 - 11.0. However, platelets have fallen to 62 from 72 in just about four months. Otherwise I have no other symptoms and feel great. I would love to remain on W&W. I also should say that I do not know whether the platelet count was automated or manual. So do I start treatment - likely A only, A&V, or V&G, or A&O, or O&V (Gazyva is not recommended if platelets are less than 70K) - or do I try to deal with platelets with Rituximab, prednisone and IVIG and possibly Dexamethazone and kick the can down the road again on W&W, or PROMACTA or simply try some other option such as papaya leaf extract or "FMD" fasting. My BMB shows that there is no indication of MDS, No PLL, No ALPS. (monoclonal Bcells 83%). Any advice, input or comments would be appreciated. Thank you in advance.

[lankisterguy Volunteer]

Hi bertie260,

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Your question seems to fall into the category of medical advice, which we cannot do.

We can share our experiences, and published data, but not recommend your personal path forward.

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You really need to discuss this with a CLL expert and decide whether any treatment or which treatment might improve your condition. And obviously, continuing W&W is also an option. The doctors will always consider "do no harm" and nearly every treatment has side effects and down sides.

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We had a discussion with you just 3 weeks ago healthunlocked.com/cllsuppo...

about finding a medical expert and team to help cllsociety.org/cll-sll-pati...

So have you pursued any of those suggestions? Especially cllsociety.org/programs-and...

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Len

[seelel]

Your ALC is low and your red blood cells and neutrophils are in the normal range. The question is - are the platelets reduced due to an overcrowded bone marrow or because of something else. Given that the other major inhabitants in the marrow factory are doing fine, then why have the platelets dropped? Could there be another reason?

I'm in a similar situation to you with 16 years W&W and similar favourable prognostic markers. I've faced fluctuating platelets on a few occasions, and in the absence of a text book answer (Doctors don't seem to know), I suggest that there is such a thing as mild and intermittent ITP that causes the phenomenon.

This 'wandering platelet syndrome' has cropped up with numerous CLL'ers over the years, and sometimes it corrects itself and sometimes it's remedied with a little help. I wouldn't be in too much of a hurry to seek a medicalised solution. First of all you need to establish whether it is a downward trend or a fluctuation.

[bertie260 in reply to seelel]

It is clearly a downward trend. down from 140 about 9 years ago. And down from 90K in the last 2 years. If it were not for falling platelets I would stay on W&W as long as I could, but low platelets decrease my options for treatment - for example - Gazyva (O) may not be a prudent choice due to its effect on platelets. I probably provided too much information in my initial post. All I was interested in were comments/experiences of others who chose to address low platelets without diving into some frontline CLL treatment. When I posted a few weeks ago I did not know of these alternate approaches to address platelets alone. So if anyone has a similar experience or comment please let me know. I am starting the process of getting a 2nd opinion from CLL Society but it seems like a long complicated process. Thanks

[seelel in reply to bertie260]

Bertie - You and I had a discussion about falling platelets 2 years ago. We discussed in detail the use and effect of papaya leaf powder.

[bertie260 in reply to seelel]

Thank you for your reply. I do remember that prior discussion regarding papaya. I added that into this post only to include ALL the particular prior discussions regarding raising platelets. In a nutshell, my main issue is whether to concentrate on platelets only ( i.e. prednisone, IVIG, rituximab etc. which by the way would not disqualify me for a first treatment trial down the road) or prepare for some frontline first treatment alternative now. If it weren't for low platelets I would do nothing. I still do not have any bleeding issues that I know of. I guess leaving W&W after 18 years is a big issue for me. W&W for me has kept CLL in the background and I almost never think about it. My only contact with my Doc was a yearly or semi-annual blood test. Thanks .

[LeoPa]

Wow, 18 years! I hope to be you 15 years from now. FMD first. Papaya leaves - never.