which Chronic leukemia: is worse? none is worse... - CLL Support

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which Chronic leukemia

tedrog profile image
12 Replies

is worse? none is worse, right?

different, but the same in that sense, right?

Also, anyone a good CML forum?

last Dr wanted to treat CLL, he missed the CML.

second, this time a specialist in both, said no, we'll treat the CML. Fyi, my CML blasts are, by bmb, 2%.

Don't you think I should W&W that one too, at 2%?

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tedrog
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Cjmc12 profile image
Cjmc12

You have CML and CLL?

tedrog profile image
tedrog in reply to Cjmc12

yes? yes.

CLL(?) clonal B cell population consistent with CLL/SLL ... 4.57%.

11q22

13q14 -- which is not there in one of 3 FISH, the 2nd one. ?

cd38-/zap70+/Ig?? unmutated. (bad memory).

CML (Ph+/BCR-ABL+).

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

A friend who is very involved in the CML world recommends the National CML Society.

tedrog profile image
tedrog

so all the Chronic versions are "equal" ?

I think they must be. IDK, trying to figure it out.

Jm954 profile image
Jm954Administrator in reply to tedrog

Untreated CML is probably less desirable than CLL because a high wbc of the type in CML can be more 'sticky' and cause 'stasis' where the white cells pool, often in vessels near the brain, which can cause a stroke. Untreated the white cell count can double in a couple of weeks.

Apart from National CML Society, this is about the best site I've seen and has a forum for Q&A cmlsupport.org.uk/

Your blasts are nice and low at 2% so you're in a good place with the CML at the moment. Definitely no W&W with CML, it can transform at any time into a far less treatable form with no warning. There are two less treatable forms - called Accelerated phase and Blast phase, neither of which you want to encounter.

tedrog profile image
tedrog in reply to Jm954

Thank you SO much. I guess I'll take the Sprycel starting Monday, i already have a 30 day free supply and have already started Allopurinol.

:/

Jm954 profile image
Jm954Administrator in reply to tedrog

Sprycel is one of the newer TKIs and supposed to give a deeper response more quickly

than Glivec.

The side effects are almost the same as BTK inhibitors. Here's a link to the chemocare site to Dasatinib - don't worry about the long list of possible side effects.

chemocare.com/chemotherapy/...

Best wishes, keep us informed and good luck! :)

tedrog profile image
tedrog in reply to Jm954

That WAS/IS my worry. I'm susceptible to lots of them. TERRIBLE cramps (cannot take Statin drugs) ... and more. skin conditions, arthritis all over, sinus... kidneys, liver... PCP looking at some fluid around heart... specialist did CT, then gave me the meds, so i guess that's ok. I'm not on any other meds. :))

Thanks, so helpful!!!!!!!

Jm954 profile image
Jm954Administrator in reply to tedrog

I found exercise helped enormously with my cramps which made my life a misery. Alcohol makes them worse, need to keep hydrated.

Important to keep going though x

tedrog profile image
tedrog in reply to Jm954

Yes, I changed my diet 8 months ago, TONS of water has stopped most cramps... however, I still feel my muscles, ribs, legs, hands, boiling... rolling... trying to knot up, several times a day/night.

I tried every Statin they had a few years ago. I'm not obese, well, technically I may be close. 6' tall, 212lbs. Was 235!

Bad knees, hips, and shoulders! I play guitar, fusion blues. :)) I can still dance. ;))

:))

tedrog profile image
tedrog in reply to tedrog

actually, having lost at least 15lbs, soon maybe 20, YAY! i'm beginning to wonder if my appetite has been decreasing. ...i am ...idk... it's kinda weird not "wanting" anything. i think i might, even the chocolate, ... meh. i still am fairly certain i could gouge for a few days and gain... at least i think i could. not going to test it.

i may need a bit of iron, maybe more broccoli? :)) .

tedrog profile image
tedrog

ok, answering my own questions, maybe these links are useful to others:

ncbi.nlm.nih.gov/pmc/articl...

note: UNFUNDED (like to see one of these on CML): cllsociety.org/2016/05/ash-...

everydayhealth.com/leukemia...

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