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Old Sun Aug 15, 2010, 01:59 PM
launch launch is offline
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Join Date: Mar 2009
Posts: 193
3rd Hosp Stay in past 30 days

Ron was released from hosp after another week inpatient. He was admitted again due to fevers and they've run every test possible on him, including PET Scan, chest CT Scan, Sinus Scan, respiratory cultures, blood cultures, etc... They wanted to find the source of the fevers, by finding an infection, and/or finding Leukemia outside of the bone marrow. The BMB 3 wks ago, and the recent testing (Scans, blood, etc) did not reveal anything that would suggest Ron had transformed into Leukemia.

After 1 wk of trying to dx Ron's fevers, we were told, it is believed that Ron's MDS is transitioning into Leukemia and the recommended treatment is "Induction Chemo Treatment", just like he already had Leukemia. They said, they would start it right away, instead of waiting until he got really sick.


We are completely stunned. There is no visible markers that it has transitioned into Leukemia, but, believed to be doing so now. So, we had to make our decision what to do, as it was recommended to just start treatment now vs going home and coming back. (Ron was already inpatient and would have to be so for at least 30 days for treatment).

Ron opted for a different route. He said he wanted to be discharged from the hospital, and he wanted to travel back to Moffitt Cancer Center, to visit with Dr. List before making a decision as to what treatment he would undergo. We were only provided one option here, and that is, "Induction Chemo", so, we're just looking for some other options, even if it means we have to travel to Tampa, FL regularily for some treatment.

We leave out on Tues this week, and we have an appt on Wed. Wish Us luck. Ron is in a lot of pain (Bone pain), and has ongoing fevers, but, we're looking forward to learning more at Moffitt.

NOTE: I've been bugging the medical professionals to test/treat my husband for Lyme Disease. He was tested and it was negative, but, so was my neighbor, who was tested 3 times as negative, but, had ongoing fevers for 9 mons & bone/joint/leg paints, etc. Finally, a doctor treated him with the required antibiotic to kill the bacteria associated with Lyme, and he was cured. I'm not saying Ron doesn't have MDS, I just think, because he has MDS, sometimes other possibilities are not readily recognized or persued. I'm at a loss as to what to do to convience someone to treat Ron for Lyme Disease, just in case.
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Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.
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