second opinion from University of Chicago

[katherineann59]

Hi Everyone,
I just returned for an evaluation with the head of the bone marrow transplant at the University of Chicago, Dr. Van Biesen. He looked at my records from my other docs and performed his own bone marrow biopsy. His conclusion: NO EVIDENCE OF MDS. He recommended that I discontinue the Vidaza. Since he couldn't get his hands on the first two bone marrow slides, he told me he couldn't say that I never had MDS. He assured me, though, that I do not have it now. He is going to monitor me for the next couple of months and perhaps do a repeat BMB, but he assured me that he in all likelihood I would not show any symptoms of MDS and would not have to go back on treatment. Has anyone heard of this situation before?
Thanks so much,
Kathy

[Birgitta-A]

Hi Kathy,
It is difficult to know if you should be very happy or very angry when you are informed about the result of the latest BMB. Wonderful if you don't have MDS but too bad if you have been treated for a disease you don't have.

Polycystic kidney disease can lead to refractary anemia but not to low white blood cells and low platelets as far as I know. Did you ask Dr. Van Biesen what he thought about you low white blood cell count and platelet count?
Kind regards
Birgitta-A

[launch]

Kathy, first let me say, I pray you do not have MDS afterall... will keep you in my prayers...

Birgitta,
Please correct me if I'm wrong. I also asked Ron's doctor at our last appointment. I wanted to know, when they check Ron's bone marrow, would it show he had MDS if he were in remission? The doctors said, Ron's BMB would reflect if he was in remisssion. He didn't quite understand my question.. or maybe he did. I then asked him, if I had a BMB could he tell me I had MDS or not? He said, yes, he could tell if I had MDS... of course, knowing I've never been dx nor had any symptons. He said, I would show normal marrow. And then, in comparison, I asked, what would my "Normal" marrow look like, as compared to Ron's "Remission" marrow? He said, it would look the same, but, if Ron discontinued Vidaza, that, it was not "IF" MDS would return, it was "When" it would return... because, it would, and it would be possible Ron's body could build a resistance to Vidaza if he stopped and played the "Wait & See"...

This is why we were "Crushed"... on one hand, we were thankful that Ron's responding to Vidaza, but, on the other hand, we were disappointed that we would not be able to "See" God's Miraculous Cure of "No MDS" without taking that "Chance" of stopping treatment. We decided to continue praying and to continue treatment...

So, my whole point is....

Kathy, while I pray it was all a mistake, and you actually do not have MDS, I also fear, if your second opinion Doctor didn't "See" evidence of MDS, then, could it be possible that you're in "Remission"? Did he discuss this at all ??? (You were being treated with Vidaza). I would think the doctor would want to obtain your previously obtained BMB slides to confirm. I would not want you to build up resistance to Vidaza by stopping... but, of course, if it was a mis-dx, then, you shouldn't be on chemo... Argh! Frustrating I'm sure... "Bitter-Sweet" actually.

PS. I just realized, I still owe you that little book I promised... will drop in mail by this weekend. My apoligies for the delay

[katherineann59]

I did ask the doc about the possiblity of the MDS returning in a more deadly form that would be resistant to treatment. I had been told by my doc in Indiana that I could never stop Vidaza due to to this. He told me that this happens in only a very small percentage of cases. He said I don't have that type of MDS. One of the indicators he mentioned was no chromosone damage. Still, I am double checking with him. Again, I appreciate your thoughts and concerns. I will keep you posted with my progress. My thoughts remain with all who battle this horrible disease.
Kathy

[helen c.]

i dont want to worry you but my husband william was dx. jan.08 with mds intermediate risk. he was treated thru aug. of 08 with vidaza an aug. bmb was done and he was cleared of mds he no longer transfusion dependant and white count was normal so treatment was stopped his platlets were never affected. in jan. 09 his labs started to go down and so another bmb mds was back and all 3 lines were down and now had chromosones were affected. vidaza was restarted but without success he is transfusion dependant now and has to have platlett infusion now so be very careful about stopping treatment .

[Birgitta-A]

Hi Cindy, Kathy and Helen,
You know when I participated in a Patient-Forum that MDS Foundation had in Stockholm in the spring 2009 I learnt that there are MDS-patients that really get cured after treatment with drugs .

Professor Eva Hellström-Lindberg who is one of the best MDS doctors in the world showed a slide about patients with RA or RCMD with normal karyotype (no chromosome aberrations) and HLA DR15 (a Human Leukocyte Antigen) that responded to immunosuppressive treatment slide 24:
http://www.ebmt.org/ebmt_2009_slide_bank/209.pdf

She also told us that the prognosis figures were old and the prognosis for almost all patients is much better today than her slides show.

This means that I believe that there are patients (though very few of us) that can be cured without a SCT perhaps after treatment with Vidaza 14 shots monthly (instead of 5, 7 or 10 shots). Some patients treated with Revlimid have managed very well too during many years.

I am aware of that most patients who stop treatment with Vidaza must try to find some other kind of effective treatment to slow down the disease.

“Never say never”
Kind regards
Birgitta-A

[Neil Cuadra]

I tend to say that the disease "is cured" after a successful transplant and is "in remission" if the symptoms are gone after a series of other treatments, since it may not be clear exactly what caused the change, and because of cases like Helen's husband. But that's just semantics, and either way it's a great result!

[launch]

Birgitta,

Thanks for the info. I still find this disease difficult to understand... even laid out in slides... but, I continue to try to learn everything I can about MDS so I can help Ron. Your belief of the possibility of being cured with the 14-Day injections is encouraging. Do you know what dose it is? Ron is on the 10-Day, but, I've not heard of the 14-Day treatment protocol.

I know they may reduce Ron's treatments, but, I'm a bit reluctant now.. perhaps he should stay on the full 10-Days... who knows... we'll just have to meet with the doctor and discuss it...

Talk later,
Cindy

[Birgitta-A]

Hi Neil,
Professor Eva Lindberg-Hellström told us that they had very few patients, who had been treated with Antithymocyte globulin and cyclosporine A and had no symptoms during many years.

The reseachers reported about one patient of 20 with RA who still was in complete remission at 42 or 58 months. This article was received by the journal 2005 and the patient now can have been free from symptoms 42 or 58 + 48 months which means 90 or 106 months (7 or almost 9 years).
http://www.haematologica.org/cgi/reprint/91/5/667

Then I have read about a few patients treated with Revlimid who had been free from symptoms more than 7 years but these patients still get the drug as far as I understand.

MDS are many very complicated diseases and the patients that respond well to ATG and cyclosporin A are on the border to AA - perhaps their dx is unclear from start.
Kind regards
Birgitta-A

[amykdb]

Hi Kathy-

What wonderful news! It may sounds too good to be true, but I have the utmost faith in the transplant team and MDS Specialists at University of Chicago. My mom is currently undergoing treatment there with Dr. Godley and will be getting a BMT later this month. They have been able to get her the treatment she needed and moved quickly to find a match and schedule her transplant. I am quite certain that her local hematologist in St. Joseph, MI would still be scratching his head, not understanding any of it and giving her the wrong medication for her MDS.

I really hope you'll be out of the woods with this and be able to live a normal life again. I am trusting the staff there with my mom's life. And they have only impressed me (not an easy thing to do) so far. Your in good hands.

All the best to you!
Amy

[katherineann59]

Hi Amy & Birgitta,
Thanks for the encouraging posts. After reading some of the earlier replies, I contacted my doc at U of Chicago and voiced some concerns. I am seeing Dr. Van Biesen and Dr. Ramsdale. They assured me that I am being closely monitored and that there truly is no sign of MDS at this time. I'm going to go with their recommendation to not resume Vidaza. I have follow-up apptointments already scheduled with them. Thanks for all of your concerns and info. It's been 2 months w/o chemo and I am feeling better than I can remember feeling. If I've learned anything about this disease, it's how complicated it can be and that results vary so differently among the individuals fighting it. I'm wishing the best to all who are here. My thoughts and prayers are with you all.
Kathy

[katherineann59]

Hi All,
Just an update. I went back up to the U of Chicago last week. I saw Dr. Van Biesen and Dr. Ramsdale again. Still NO SIGNS of MDS. They are attributing my blood counts to my kidneys. My kidney doc has agreed with this. Dr. Van Biesen believes that I was misdiagnosed. As I have been unable to get my hands on my original bmb slides, this can be definitely proven. The plan for me is to return to Chicago in 6 mos. for another check-up, bloodwork and depending on what those tests show, the possiblity of a final bmb. The good news has taken awhile to sink in for me. Both docs assured me again that I am being closely monitored do not need to worry about MDS. I will still check in from time to time. This forum has been so very helpful. Please know that my thoughts and prayers remain with all who continue to struggle with this disease.

[Ruth Cuadra]

Kathy, this is great news. Please stop by now and then and let us know how you are doing.

Regards,
Ruth