[garsch]

I don’t know much about MLD, I had MDS RCMD. I do have experience with Vidaza and the normal dosing for my treatment was for 6 cycles. Each cycle was 5 days of Vidaza injections in the stomach, then 21 days off for 6 months. Regarding the stem cell transplant I am 66 yrs old and I had one in June. I saw several people at the hospital older than I that who were also getting stem cell transplants so I am not sure age really comes into play. That’s really a call by your Dr. but I would also get a second opinion.

[garsch]

Lynne I had MDS RCMD and prior to my transplant I was getting transfusions every week or so. I was on Jadenu (deferasirox) for iron overload. I was exhausted all the time with shortness of breath and I did not want to do anything. Trying to walk up the stairs or just standing in the shower was difficult. I had CT scans, EKG’s, & Xrays of my lungs and heart but nothing was obvious. My Hemoglobin would be in the 7’s but even after transfusions never got much above 9. I am 66 years old and I had a bone marrow transplant in June of 2017. They told me the shortness of breath would go away and after the transplant and the first thing I noticed was I could breath again. The Center of Excellence Hospitals listed on this website see these diseases all the time. I can’t stress how important it is to see a Dr. that is experienced treating this disease.

[garsch]

Mark I have MDS RCMD and have been getting chemo off and on since I was 63. I was getting transfusions every week or every other week prior to my transplant. My white counts where much lower than yours but my blasts were not as high. I was exhausted all the time. Trying to walk up the stairs was a real chore or just standing in the shower. I saw another Dr to get a second opinion, he consulted with my Dr and they both agreed my best chance would be a stem cell transplant. I am 66 years old and I had a bone marrow transplant in June of 2017. I have had my ups and downs due to the weakened immune system but I had a recent bone marrow biopsy and it came out negative. So far so good. I would get a second opinion about your condition. My Doctor and the Dr I received the second opinion from are both from Centers of Excellence Hospitals in the Chicago area specializing in treating MDS and other related diseases. Don’t wait too long because MDS can get aggressive and the only way to cure it is with a stem cell transplant or try to control it with chemo.

[garsch]

anna mi, I had low intermediate MDS with tri +8 and q20 abnormality (RCMD). Low platlets is how they finally found the MDS with bone marrow biopsy. I was diagnosed at 64. I tried Vidaza for 6 months and it lowered all my levels to the point where they thought I was in remission but unfortunately it came back. Some people have great results for years I am told. I went back on Vidaza for a few months with no success then my Dr put me on Decibine for 10 days which knocked down the +8 but did nothing for the q20 so after speaking with another Dr at Univ of Chicago and my Dr they agreed I should move forward with the stem cell transplant using a donor. I had the transplant in June of this year. Everyone responds differently to the transplants. I was in the hospital for 29 days and the only complications I had were stomach and bowel issues for a week or so along with a rash. My blood (whites and neutrophils (10.5) are normal now, my hemoglobin (12.3), reds (3.9) are very near normal. except for platelets (73) which are gradually coming around. I saw people of all ages getting transplants when I was there and it’s the only option for a cure. I went to Northwestern Memorial in Chicago and was told I had a 60% chance to cure the disease with transplant. They do numerous transplants per week. I think there was like 30+ people getting transplants when I was there. Yesterday when I was in for my bone marrow biopsy I ran into a gentleman in his 70’s getting his port out who had a transplant the same week I did and his bone marrow showed he was disease free. I should hear on my biopsy next week hoping for the same results, clean and disease free results. One thing I can tell you is over time Vidaza wears you down. If you consider a transplant do it when you are healthy vs waiting. Try Vidaza if it works great, if not talk to a Dr that has done many transplants about your options. I would certainly go to one of the centers of excellence locations on the MDS website because a Dr that deals with MDS on a regular basis knows whats best for your father. Hope that helps.

Gary

[garsch]

Justin, I am 66 and was previously diagnosed with MDS RCMD with q20 & tri 8 chromosomes bad. My platelets were low and further bone marrow biopsy identified the disease.

My Dr started me on Vidaza chemo for 5 days then 21 days off for 6 months the first year. The chemo affects everyone differently. The first series for me just bought on some nausea which medications are available. My Dr thought it was controlled but blood counts declined and a bone marrow biopsy showed the bad cell were still growing. Transfusion at that time were not required.

My Dr tried another 5 months of Vidaza with no change. After the first chemo treatment I started requiring monthly transfusions. As time went on the transfusions went to bi-weekly. My iron levels increased to the point I needed to take additional very expensive drugs for iron reduction. I was fortunate my insurance paid for them although many hospitals have programs for people that insurance does not cover.

Everyone is different for Hemoglobin levels. For me when I would get below 9.0 I had trouble getting up stairs, standing in the shower, lifting anything and always fatigued. The Dr normally decides when Hemoglobin is required for each patient and he sets the level for insurance. I would make sure your grandpa is seeing at Doctor at one of the MDS centers of excellence. They also have a shot they can give you to increase Hemoglobin, they are expensive and never worked for me but I have heard from other people they work.

After my second series of chemo treatments my Doctor tried 10 days of Decetimin chemo which also had no success controlling the cells so at this time I was getting weekly transfusions and he suggested I get a stem cell transplant using a donors cells. There is a national directory for donors but I found my 60 year old brother was a match and moved forward with the procedure.

I was in the hospital for 29 days in June of this year. I had two different types of chemo for three days and total body radiation prior to the procedure. Everyone responds differently to these types of treatments. I believe age, current health, and others factors determine treatment. The transplant was like getting a platelet transfusion. I had stomach and intestinal problems for a week afterward but everyone’s response is different.

Since I have been home I have not required a transfusion or platelets and my blood is close to getting back to normal. The Chimerism report shows I am 100% on my brothers cells and an upcoming bone marrow biopsy will determine if any bad cells still exist. I can only pray for success.

I hope this story helps you with your grandpa. I think the most important factor for him is see the right Dr, pick one that has a good track record treating MDS and a hospital that has experience in these areas. See centers of excellence on the MDS website.

Garsch

[garsch]

I’ve had 3 bone marrow biopsys in the hip and they are extremely painful. Main reason, I believe is because its difficult to numb the area sufficiently and the bone is so deep. They can numb the area but once they get to the bone, the constant grinding back and forth attempting to get through the bone is painful. Every biopsy I have had, the individual performing the biopsy had difficulty getting through the bone. Either the tool would slip on the bone or they had difficulty boring through the bone. Not to mention the pain involved in extracting the marrow. Recently I was required to get another bone marrow and I told my Doctor no way I want to be put asleep. He told me that he would do the biopsy, and he would go through the sternum. I was anxious about this initially because I read all the negatives about the precision required in this type of biopsy but I believe in my Doctor so I did it. I have to say I was amazed because the entire process was done in like 10 minutes vs an hour to and hour in a half by the hip method and the sternum biopsy had very little pain.

[garsch]

Have not heard of anyone developing Thrush from Vidaza. I know the chemo drops all your blood counts to very low levels before they start coming back, if the Vidaza is going to work. In my first 6 months of treatments the Vidaza did not affect me that much other than some constipation and nausea but this time around it is very difficult to deal with.

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