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MDS Myelodysplastic syndromes

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Old Wed Jul 25, 2012, 09:07 PM
Jer Jer is offline
Join Date: Jul 2012
Location: Roswell Park, Buffalo, NY
Posts: 1
Question MDS from Chemo... No avaliable treatment?!?

Hello All,

My mother is 57 years of age and two and a half years ago she was diagnosed with bladder cancer by her urologist. Immediately, they had her start chemo for bladder cancer, she would go to the oncologist once a week for treatment. After a cycle of treatments the urologist removed her bladder and provided her with a urostomy. A few days after her surgery the urologist came into the hospital room and said that the pathology results came back from the surgery and the results showed that in actuality she does not have bladder cancer but ovarian cancer, this was a huge shock. She went back to the same oncologist after her surgery weekly for ovarian chemo treatments and ended up in the hospital 5 times for a uti (she is very susceptible to them after surgery and few days after chemo, e coli and other nasty bacteria). After the diagnosis of ovarian cancer, and consistently getting infections after chemo, we got a second opinion and went to Roswell Park in Buffalo, NY, right in our backyard, only 15 minutes away. She went through at least 6 more cycles of chemo and a clinical trial antibody (mora b?), this time for ovarian cancer. One of the nurses that has been caring for my mom while in the hospital noticed that my mom's Platelet count was taking a very long time to regenerate back to normal after chemo, and that her iron levels were very high. Needless to say the next week we were in the leukemia clinic, and had no idea why we were there. The hematologist said that the nurse had some concerns about why her platelet count was taking so long to come back up and that chemo had to be consistently delayed. Well, the hematologist took a bone morrow sample and the results came back to the conclusion of MDS, with gene 11 mutated and less than 5% blasts in the marrow. She gave us the treatment options of more chemo and a bone marrow transplant. We left the hospital in shock. Upon returning to the hematologist, she had spoke to my moms trial doctor to determine the best course of action. After speaking with the clinical doctor the hematologist said that because she still has cancer (2 1cm tumors) they are unable to treat the MDS. Do I have her stop the anitbody treatment to treat the MDS or just wait until the MDS becomes more prominent and symptomatic. Should she go for another opinion? In the back of my mind I'm thinking that the clinical doctor wants her to say on the antibody because if she stops and has treatment for MDS the trial is debunked... What should we do?

....a very very concerned son

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Old Mon Jul 30, 2012, 05:54 AM
lotusbud lotusbud is offline
Join Date: Apr 2010
Posts: 53
Hi Jeremy,
you had quite a rollercoaster ride. Take a deep breath...
Since you have several issues to deal with, try to find information on each. Second opinion should not hurt, but try to find somebody who can deal with complex issues... Too many doctors see only a part of us. Then, what about the rest?
Find out which type of MDS they are talking about. Some forms can linger for a long time, in watch-and-wait mode. Ask questions, this forum is full of very knowledgeable people. Keep strong, and take breaks from it all!
all the best
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Old Mon Jul 30, 2012, 09:24 PM
Darice Darice is offline
Join Date: Jun 2011
Location: Colorado Springs, CO
Posts: 91
Oh My!

Boy, I'm not sure that a roller coaster ride comes close to the experiences you & your mother have been through. I'm having a little trouble following . . . did your mother actually have her bladder removed and then get told that she had never had bladder cancer? Didn't they biopsy before? Or was it that they had gotten it all with the radical cystectomy and the lymph nodes they removed as a part of the RC were all clear? Or was it that the ovarian cancer had metastasized to the bladder and that's where it was found first? Or is the ovarian cancer completely distinct from the bladder cancer? Whatever, it's pretty darned confusing. My husband was in the midst of bladder cancer treatment when his tMDS was discovered . . . it came from previous treatment for his non-Hodgkins Lymphoma and the stem cell transplant for that. His bladder cancer started in his kidney: the right renal pelvis. He still has his bladder and his kidney, and has not had a recurrence, but we watch with a cysto every 3 months and periodic scans. Right now, he has a pseudomonas infection in his bladder . . . I think that's often just part of life after dealing with bladder cancer. We rushed through the final treatment for the bladder cancer before we started dealing with the tMDS. I would sure be looking for the best team you can possibly put together to deal with all of this, and it is imperative that all your doctors talk to each other. You need someone in charge of things whom you both trust.
hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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