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MDS Myelodysplastic syndromes

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  #1  
Old Sat Apr 20, 2013, 11:21 AM
Darice Darice is offline
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Decision time . . . HELP!

My hubby was diagnosed with treatment-related MDS two years ago. Six months prior to that, he was diagnosed with bladder cancer . . . actually, UTUC . . . it is in his kidney, never has been in his ureter or bladder. Gold standard for that is nephrectomy, but it was determined at the time (prior to tMDS dx) that he would probably not survive that surgery, so we treated with aggressive but lesser ureteroscopies and lots of chemo instilled into the bladder.

Tried Vidaza with the tMDS, but that didn’t work for him, so we’re just doing labs and Neulasta injections every other week. Miraculously, very few transfusions have been necessary. Now the UTUC has returned, still/again in the kidney . . . right renal pelvis. Incredibly, he is in better condition now and it has been determined that he could probably survive the surgery. We have four options:

1) Do nothing. This is probably the non-starter in the lineup. We’re fighters.

2) Follow the previous route . . . a repeat of the first time around with ureteroscopies to cut and scrape and burn the cancer away followed by the instilled MMC. First time, that was a total of six ureteroscopies and 18 instillations of the MMC. While a ureteroscopy is a much lesser surgery than the nephrectomy, it still involves general anesthesia and the potential for any of the bad things that can happen during surgery. 



3) Initial ureteroscopy (this coming Wednesday) to biopsy, followed by total nephrectomy. Nephrectomy would be laproscopic and robotic, and would take the right kidney, ureter, and bladder cuff.

4) Same as option 3, but just taking the kidney and leaving the ureter stump and bladder cuff. Our surgeon has only done it this way a half dozen times . . . usual is to take it all . . . but sometimes special circumstances make this the best option. It would be a much easier surgery, and he would be comfortable with it (if all is as expected with the ureteroscopy) BECAUSE the cancer has never been in the ureter or bladder.



So far, we're leaning toward option 4. Hubby is pretty positive about getting rid of the kidney and (hopefully) the cancer and getting on with life. I don't think he entirely understands how tough the surgery and recovery might be, but he's tough and is completely comfortable with this. I worry a little more . . . OK, a lot more . . . the mechanics of it all . . . the problems with the pain meds . . . difficulty getting in and out of bed . . . him feeling miserable for a good part of the summer. But then I know how tough he is and I, also, want to be rid of the cancer. Either way, we'll be stuck with cystos every three months for the next two years at least. But the fears of a recurrence will be less. I hope.

We have to make our final decision and let the doctor know Wednesday morning . . . it will affect how he does the ureteroscopy.

Any thoughts? Previous experience? Thanks!
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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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  #2  
Old Sun Apr 21, 2013, 04:27 AM
Birgitta-A Birgitta-A is offline
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Treatment

Hi Darice,
Good that the supportive treatment has had such a positive effect! I don't know anything about kidney cancer but if I was your husband I should try option 4 - we manage well with one kidney. Then hopefully the MDS could be treated.
Kind regards
Birgitta-A
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Old Sun Apr 21, 2013, 11:29 AM
Darice Darice is offline
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Thanks Birgitta . . . I don't think we've got any good treatment options for the tMDS; I'm more concerned about his quality of life now. Guess I can envision the stress of this surgery and recovery pushing the tMDS into high gear . . . but then I see the positive side of the feeling of being able to fight the UTUC rather than just sit back and let the cancer push us around. I really hate cancer and all the impossible decisions it forces us into. We also have a possible thyroid cancer niggling at us . . . it's just on the back burner until we deal with this.
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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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Old Mon Apr 22, 2013, 11:57 AM
Peachy Peachy is offline
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Darcie –

I am mainly sending my support to you and hoping all goes well for you on Wednesday, having had family members with cancer though not at the same time with MDS. From reading your explanations it seems as if you have made the decision that is best for the 2 of you. Being proactive (not just waiting) and quality of life are the 2 things my husband and I look at with every decision. Can you go with option 4 and fall back to option 3 should something appear unexpectedly? Deb
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Husband 69 dx MDS/RARS 4/2012,Arenasp 2013; dx RAEB-1 5% Blasts - transfusions, Vidaza - BMB 12/2013 35% blasts - dx AML M6b (Pure Erythroleukemia) - Induction/Consolidate complete Aug 2014 - BMB 5%; Not accepted for BMT ; New BMB 18% Blasts with dropping whites and platelets avg HGB 9
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Old Mon Apr 22, 2013, 04:38 PM
Darice Darice is offline
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Thanks, Peachy . . . support is good! We've got labs and Neulasta tomorrow to get us ready for the ureteroscopy Wednesday . . . that should pretty much tell us whether we go option 3 or 4, but I'm almost certain he would be able to switch mid-surgery should circumstances warrant. I'll ask that question to be sure. It's sure a pain having more than one cancer to deal with!
Thanks,
Darice
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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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  #6  
Old Mon Apr 22, 2013, 07:43 PM
Peachy Peachy is offline
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Darcie -
My heart goes out to you and your husband....Cancer or MDS is enough on it's own. I have been finding that asking many questions is better than missing the one you really want an answer to. Sometimes it makes my husband crazy, but in the end he appreciates what we learn. Peachy
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Husband 69 dx MDS/RARS 4/2012,Arenasp 2013; dx RAEB-1 5% Blasts - transfusions, Vidaza - BMB 12/2013 35% blasts - dx AML M6b (Pure Erythroleukemia) - Induction/Consolidate complete Aug 2014 - BMB 5%; Not accepted for BMT ; New BMB 18% Blasts with dropping whites and platelets avg HGB 9
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  #7  
Old Mon Apr 22, 2013, 08:58 PM
Darice Darice is offline
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Hey, Deb . . . I just realized we're both in Colorado Springs. I'm going to try to send you a private message.
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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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