does it mean 50 percent missing? i have p17 deleted but p53 says abnormal 50 percent.
does that mean mutated or missing
I had fish,flow, and immunohistochemical. the above was under FISH.
And as i've said before they decided on b-pll by process of elimination of others.
my b-pll diagnosis was not exactly to b-pll parameters. I think if just taken without any prior knowledge it looked like cll with added polymphocytes.
However they had advantage of a blood test in march with everything perfect and a blood test in august with everthing aok except a 14000 white count attributed to my falling down the stairs and bruising my entire right side.
What type of test are you referring to? If it was a FISH, then 200 B cells are used as a standard and it could refer to about 50% or ~100 cells showing a deletion....
If the test was a Sanger, PCR looking a TP53 mutation then I don't know.
p53 in the current notation refers to protein not the gene that encodes it...
Again B-PLL may differ from CLL... and best discussed with your doctor.
Here are a couple of case studies in B-PLL, looking at the use of Imbruvica (ibrutinib) and Zydelig (idelalisib)/rituxan...
I added this link.. to my post above. I think the great news is novel agents will work as a bridge to transplant... have they discussed starting you on it?
I take imbruvica and have had dramatic improvement improvement. the stem cell transplant was the recommended therapy before the novelty drug era was really going especially with my 17p deletion. Now i don't know if i will go to 'allo' as my doctor calls it. She did not know i would react this well to ibrutinib and says ventexla will be next. she is really up to snuff with all the new drugs in the pipeline
why should the transplant be my goal?. i have carefully studied as much info as i can get on this. Before the 'novel drug' era -with my deletions-standard therapies did not work and allogenic transplant was the only option. Now today it is not the only option. I say this not really knowing how long any of these novelty drugs will work on me- however since there are so few b-pll patients to begin with-it's guesses. The odds of good success with allo is not that great but has improved with novelty drugs added. my point being that the novelty drug era probably as good odds as the tranplant.
it's a moot point until my levels get good enough. the only reason i was sent so soon to 'allo' prep so soon is because she had no idea the imbruvica would work so well so far. Now what she says has changed from 'when you go to allo' to 'if you go to allo'. I have confidence in her and in Dana Farber.
Davids is my Dana Farber Doctor. He is not the transplant doctor there though. In honesty i felt he was pushing transplant even though the b-pll odds he gave me were from the pre-novel drug era.
That's great... you may want to discuss using Imbruvica (ibrutinib) as a conditioning agent rather than chemo... not sure what they would use in B-BLL as a conditioner..likely Campath...H1 monoclonal antibody.
I was 17% Tp53 mutated when I was tested about a year ago prior to treatment. Not sure what the implications are with respect with the degree of mutation so if anyone has a steer on this it would be good to know.
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