New member with a few questions

[carrieridge]

Hello everyone! I am very thankful to have found this board - although not sure if I will belong here. My husband (Mike age 51) is the "patient". We are not sure if he truly has t-MDS. Here's a little history: Diagnosed with Follicular Bcell lymphoma stage IV in 2005; numerous treatments (and I mean numerous!) transformed to Diffuse Large Cell (aggresive) had a auto-sct in 2008 relapse numerous times, more treatment, clinical trials, etc. Has kept his lymphoma under control with Rituxin infusion every three months and Revelimid for the past year and a half. About 3 months ago, platlets started taking a nose dive (they were low because of meds, but usually over 100). When they hit 90, oncologist had him stop revelimid to see if counts would go up, they did not, they kept going down week after week, when they hit 16, they transfused but really didn't help much. Did bone marrow biopsy - did not show lymphoma (that's good!), not much dysplasia and not blasts (which is good) Chromosome analysis came back 47,XY,+8(16)/46,XY(4) Trisomy 8. His oncologist (who is a hematologist/oncologist at UCLA who only sees Lymphoma patients), suspected MDS (she had been trying to see if it might be ITP). Sent us to another doctors who treates MDS. This doctor said that from what he can read fromt he path report (which is did say was no complete because the sample did not include "spicules", whatever that is) - did not show much dysplasia and no blast and that Trisomy 8 is not causes by treatment, so he was not sold on the idea that is t-MDS. But that my husband need to get an allo transplant because with his low platlets if the lymphoma comes raging back (because it probably will), they will have a tough time getting him into remission for a transplant because of his platlet counts.

What I'm asking cause I can't seem to find the answer - is - is it true that Tris 8 is not treatment related? how else does it happen? (his last chromo analysis was about 6 years ago and it was normal).

Anyway, they want to repeat the bone marrow biopsy next week - but what else can it be that would cause this? His platlets are sitting around 23 now and trending down again. Could it be ITP? what about the trisomy 8?

Very confused right now.

thanks for listening.

Carrie, wife to Mike

[Hopeful]

Hi Carrie,

Is his marrow hypocellular (i.e. aplastic anemia like)? People with trisomy 8 usually respond favorably to immune suppressive therapy like ATG. Has he seen Dr. Paquette at UCLA?

Paradoxically, immune suppression also increases the number of trisomy 8 cells. So, if that was part of his treatment in the past, it may explain why trisomy 8 is showing up now.

http://bloodjournal.hematologylibrar...?sso-checked=1

[carrieridge]

thanks for responding. although it says "normocellular" his number is 35% (which seems low to me, as he's 51 years old). Yes, we did see Dr. Paqette last Friday who is saying he's not sure it's MDS and that the biopsy needs to be redone. His only counts that are real low are his platlets. His hemo is 12 and his whites are 4. his mcv's are high though.


FINAL INTEGRATED DIAGNOSIS WITH CYTOGENETIC STUDIES:

BONE MARROW, RIGHT ILIAC CREST (ASPIRATE SMEAR, TOUCH PREP,
CORE BIOPSY SECTION, CLOT SECTION):
- Chromosome analysis (case Z14-12857) reveals trisomy 8 in
16/20 cells analyzed, consistent with myelodysplastic
syndrome (MDS)
- Normocellular marrow core biopsy with multilineage
hematopoiesis
- No excess blasts, no significant dysplasia, and negative
for lymphomatous involvement (See comment)
- Aspirate smears contain no marrow spicules
- Flow cytometric studies detect no monotypic B-cells
- Small non-paratrabecular lymphoid aggregates,
non-diagnostic
- Trace iron stores present on decalcified bone marrow
biopsy sections

INTEGRATED COMMENT:
Morphologic evaluation is limited due to absent marrow
spicules on the aspirate smears. Dr. Pinter-Brown is
notified of the cytogenetics results and final integrated
diagnosis on 7/08/14.

[Hopeful]

Dr Paquette is very well regarded in the AA/MDS community. He has been involved in clinical trials in the past to classify bone marrow failure diseases. If he is recommending a second BMB to rule out MDS, I would get that BMB!