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CLL at a younger age

sdeangelo
Posts: 2
Joined: Apr 2012

I was dx with CLL at the age of 47. At that time I was at a stage 0. Now, 3yrs later I'm at stage III. I had a bone marrow test last summer that was inconclusive. Does anybody know what comes next? I've been in a wait and see mode but I can't help feeling some anxiety about this now.

Canada10
Posts: 5
Joined: Nov 2012

I was diagnosed at age 63 -stage 3. Unfortunately I needed treatment right away. all I can suggest is if the doctors are not recommending any treatment, go with that. Other than a bone arrow transplant, there is no cure. The chemo simply kills off enough white blood cells (lymphomic cells) so that the red blood cells can increase. Red blood cells take oxygen to your organs and reduce the feeling of fatigue - so are very important to life. Would think at your age a bone marrow transplant is a feasible option -but I don't know how that is handled there. Here there are extensive blood tests to match with potential donors (who can be anywhere in the world). If. a donor is found, you are hospitalized and your own immune system is destroyed to make room for the donor's cells. his whole procedure can take months but, if successful, results in a complete cure.

tinwhistle44
Posts: 3
Joined: Jan 2013

I was dx at age 49 with stage 4. That was July of 2011.  Had a lymphnode biopsied and a bone marrow aspiration. Marrow was 70% cancer. Went through 6 months of Chemo ( Rituxin and Treanda ) from Aug 2011 to Jan 2012. Two days a week for one week each month. No hair loss. Felt like I had the flu for a few days after each treatment.  End of Jan was in remission. Next visit is Friday. I am feeling pretty good.  Your oncologist will watch you until you need treatment. Everyone gets individualised treatment. My oncologist gave me pills to take for anxiety; you might talk to them about it if it gets bad. Hope this helps.

yjb19
Posts: 1
Joined: Mar 2013

Was diagnosed at 38 years old about six weeks ago....stage 0-1....a couple of 'prominent' lymph nodes. 5k runner and weight lifter...no history of blood cancer in the family, though I am of Eastern European Jewish extraction.

Agree with you about the axiety...

 

tscadron
Posts: 10
Joined: Jun 2013

Hi:  I was diagnosed at age 50 on 5/1/13, stage 0, with no lymph node enlargement but WBC at about 26,000 and lymphocyte % at 60.1  I'm also a serial marathoner, currently signed up for 4 fall marathons and coaching in my summer marathon program.  All I can say, yjb, is keep up the running and weight lifting.  It can only help to keep your body strong.  And just this past week, they announced that FDA has designated a drug called ibrutinib as a "breakthrough" drug, which puts it on a fast track for FDA approval.  Google ibrutinib and CLL, and you'll come up with some encouraging hits.  My hope is that by the time I need treatment, drugs like that -- which don't kill your good cells like chemo does -- will be the new standard of care for CLL.  That's actually pretty realistic.  In the meantime, I'm going to keep signing up for all the races I've always wanted to do.  I figure it's a good bet I'll still be on watch and wait, and if I'm not, I'll have worse problems than wasting a bunch of race registration fees.  In short, I'm NOT putting my life on hold.  

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