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My husband was about the same age as your Dad and progressed recently from MDS to AML. Your Dad knows he is gravely ill and the news about AML will not be a surprise. I know my husband appreciated the 3 weeks we had when we found out the AML remission from the chemo had failed and he had a high level of blasts in his perpheral blood. There were no more options. We opted for hospice at home–he was very happy being in his own bed with familiar surroundings. We had a normal evening last night–ate, chatted, and went to bed as usual. He died early this morning in his sleep. Get a copy of the book “Final Gifts”. It really helped me put all of this in perspective.
My husband has MDS which recently progressed to Leukemia. There are treatments for Leukemia at 69–my husband is 70. You can get a lot of help on the Leukemia site. Here’s the forum link. It’s important that you go to a facility that specializes in leukemia. The statistics are very antiquated and there are many new treatments. There are also many former MDS folks over there that have had success with the leukemia treatments.
Bill’s temperature has been 97.4 for years. He was diagnosed with MDS RARS this year, but now thinks he had it for many years.
My husband (70) was recently diagnosed with RARS int. -1 as well. He has been getting Tx every 3-4 weeks. Low hemoglobin levels dramatically affect his breathing (he has asthma and COPD) which makes his heart overwork. There are not enought red blood cells to carry the oxygen. He gets 2 pints each time. He has also started on procrit and neupogen shots and the frequency between Tx is getting longer.
He gets his blood tested every 2 weeks, although his breathing tells him it’s time. He also wears the plastic wristband so that he doesn’t have to have his blood typed/cross-matched each time.
If you can, go with your Mom on one of her doctor’s visits. Take your questions and find out the answers and what the options are and what the doctor recommends moving forward. Does your Mom have a good doctor that coordinates all the input from the specialists and treats your Mom as a whole person–not each specific condition? When my husband had prostate cancer in 1990, we were able to handle it only after we knew what we were dealing with–that way he made choices, they weren’t made for him. It really makes a difference.
Thank you for the information and the tip on the EPO and iron. I will have my husband check for those values.
Bill’s been diagnosed for such a short time that we are still trying to figure all this out and get some of the chaos organized. He was originally diagnosed with a compromised immune system and COPD because he was having trouble breathing and getting infections all the time–it’s amazing how much better you breathe with some red blood cells!
It was after we changed to another pulmonologist who suspected MDS that we were sent to the hemotologist.
After 1-1/2 years (though we suspect longer), we have a diagnosis. I plan to start a thread with a list of questions for the group.
Thanks for everyone’s active participation and caring. It is so refreshing to find such a great group of people.
My husband(70) has been recently diagnosed with MDS-RARS and is also on Neupogen and Procrit. The Neupogen has has helped a little bit but not the Procrit. He is getting Tx every 2-3 weeks.
I know there are different variations of MDS-RARS, but his hemotologist at Scripps in San Diego said that their have been very positive results in the Revlimid trials for his condition. He told him last week it should be available inside 6 months so he must feel it will be approved by the FDA on October 7.