5 replies to this topic

[sarah1403989277]

ok i just remembered i was also dxd with sweets disease .i was just curious if any one else has had this. i went to a dermatoligst they biopsied one lump and then they called with the results. this was added to my cml+ph with mds. now due to my mds they want to do a BMT. man this all sucks. so was just curious what u all thought

[Trey]

You won't like my answer.  I doubt you have anything except CML. 

The Sweets Syndrome thing is likely just a drug rash side effect, since it can look the same.  See the link below which says: "Sweet's syndrome may also be a reaction to a more serious condition, such as leukemia, or to certain medications."

http://www.mayoclini...ECTION=symptoms

We have previously discussed the MDS issue.  From what you have described, you likely just have the Trisomy 8 which some CML patients get along with the CML.  It is thought that the TKI drugs may even cause it in some patients.  You have not said that there are other symptoms.  So I question the diagnosis based on others here who have (or had) Trisomy 8.  When the CML becomes under control, the Trisomy 8 usually goes away.  That should tell you something.  MDS doesn't just "go away".

So the Onc at OHSU being a BMT specialist thinks that a BMT is a good idea.  What a surprise.  When the only tool you have is a hammer, everything looks like a nail.

[sarah1403989277]

i was just curious about the sweets as i have not seen it on here. my last fish showed 27/600 nuclei showing BCR/ABL1 marrow showed normal celluarity dyserythroipoiesis and dysmegakaryopoiesis no morphologoc evidence of CML,flow cytometry was normal with <1% blasts mild eosinophillia (7%) cytogentics showed 47,xx,+8 (12) and 46 xx t (9;22:12,p11.1) (8)

mds is IPSSint-1 due to +8 and thrombocytopenia (25 % luekemia risk in ~years median survival 3.5 years in this catagory)can u translate this for me please

[sarah1403989277]

your wrong i love your answer and i hope u r right

[Trey]

So your BMB cytogenetics showed 8 of 20 cells viewed were leukemic (40%).  FISH showed approx 5% leukemic cells (quite a difference between cytogenetics and FISH percentages).  I would trust the cytogenetics more.  The Trisomy 8 is in the non-leukemic cells, which is what patients with CML can see, and this is NOT considered to be MDS.  I don't know where you get the survival stat, but it is not accurate, even with the Trisomy 8.  You may be somewhat higher risk than others, but you need to give the Sprycel time to work. 

The key is that either the TKI drugs will work or not.  Unless you want to bet on them not working (which is what the OHSU doc seemed to be saying), I personally would wait and see if the Sprycel works.  Stay on it, no matter how you feel.  Everything depends on your staying on the drug full time. 

So your docs have only diagnosed one out of three issues correctly, as far as I can tell from here. 

[sarah1403989277]

oh trey i dont plan on not using the sprycel. i want it to work i dont want the bmt .i have no plans on quitting the sprycel. i take it every day and my reaction to sprycel is down to just diarrea but i just use a antidiarrea.oh dont get me wrong i am still fatigued but so what.i just do what i can on the days i can.and the survival stats were on the papers along with everything else i just typed what the report read. i pray u r right on this cos i dont want the BMT. i just want the sprycel to work i go in next week for a cbc hopefully it has kicked in