Hello. I was diagnosed yesterday, with serious MDS, I have the biopsy results, but have not categorized them, but it shows 11% or 3% blasts and some chromosome damage. I am due to go into hospital Thursday or Friday ( my blood counts are stable enough to allow me a couple days to take care of some business) and I am told I will be in for around four weeks. A 7 / 3 day chemo regimen (I have the chemo names downstairs) and then to see if the marrow grows back right. I imagine some of you have gone through this protocol in the past. I need advice on:
1. How to cope for four weeks in the hospital, what to do? Coping strategies?
2. What can I expect in terms of how I feel? Are you awake enough to read? Work on laptop?
3. What is your lifestyle post treatment? The Doc is uncertain about post treatment protocols, it will depend on response.

Background: male, 65, lost my wife to pancreatic cancer in October. Semi-retired systems engineer, OK financially and with health insurance (Medicare Plus through a Federal Retirement, plus Navy retirement). Daughter, an adult, lives at my house in northern Virginia ( came home to support her mother's illness), son and DIL and 2 grandkids in Albuquerque, and SIL in the same town. So I have family support.

Advice?
What can I expect?

Thanks,

Kirk

What can I e

Hi Kirk,
First, let me express my sympathy for the loss of your wife.Second, welcome to our board-it is a bittersweet welcome as we do not wish anyone else to be diagnosed with MDS. Although I am only 37, I was diagnosed with MDS back in August when I went to the emergency room feeling extremely fatigued. My hemglobin was at 5.5! I wish that I could be of more use concerning hospital time but I have fortunately been very lucky. I was able to be outpatient as all I required was infusions every other day. I was started on a chemo famly drug called Revlimid in September and I have not looked baack since. My levels are normal. There is another girl on here with the same rsults. I do want to say that when I was diagnosed I was beside myself. I was so afraid and felt lost. I joined this board, researched MDS until I couldn't research anymore, and I kept positive. I am a 1st grade teacher and though the docotors advised against it at the time, I wne tback to school in September (and very happy that I did) I continued with my life even with needing to be at the infusion center so often and I feel that has been the best medicine for me. It is great that you have so much support and money is not your main worry.Put your efforts into getting yourself well and research, research, research -just stay on the reputable sites as some of the sites are not to be trusted. Final piece of advice- do not bother yourself with statistics becuase you are you not a statistic and no one can say what your experience will. Good luck and happy health.

Kirk, I give you the same kind of welcome that Jeanine did. We're glad you found us because helping one another is what we're all about.

Your best avenue for advice is probably Mike, as he has very recent experience on a long hospital stay. You can also go back thru the posts for what he has already written.

Posh, it's almost too bad that your dad is still mentally acute. My mom wasn't, so I didn't have to deal with the feelings you are dealing with. His assessment is unfortunately real, except for one thing--he is needed by you. I told my mom it was all right to go; we had finished our "business" by that time. She is still in my heart, as your dad will be in yours.

I forgot to say that I visited the vampire yesterday, & my count rose to 10.2, so I'm heading up again. I'm about where I was at the beginning of the month.

Also, I will be out of town for a week, so probably won't post for a while.

thanks everyone. it sure does help coming here and venting knowing I have all of you that know what I am going thru and what Dad is going thru.

birdmom Dad's mind isn't sharp. I know it is the lack of oxygen though. I told him I would always need him and he told me "you know baby I can't stay forever. I told him I know Dad and I will miss you. I am going to spend time with him today.

Thanks for the advice. This afternoon the hematologist called and said change of plans. She had done a consultation with the MDS center at Johns Hopkins and they recommended a different route to take a regimen and work towards a consultation at Johns Hopkins and possible transplant. So I will not be going into the hospital tomorrow ( unless for a Medi-port). That is certainly more optimistic.

Thanks again for the advice.

Kirk

hi and welcome kirk. are you transfusion dependent? if not they probably won't do a port until you absolutely need one. Good luck with your treatment!

ok guys I was doing some research on benzene. wow! I have several of the risks factors for any of the bone marrow issues. I worked in dry cleaning for a few years and have smoked most of my life. I know not a good thing.

what were your risk factors? if you don't mind sharing.

Shortness of breath. What are your experiences? Have you tried oxygen for relief? Did it help a lot or a little? Seems to kick in more profoundly when th hg drops but is an ongoing issue. Any other suggestions for improvement or relief other than immobility.

mary I was wondering about the risk factors for getting mds. like exposures to benzene or what may have caused it. I don't have it but my dad does.

Dad has grown very weak. hardly has enough energy to talk. As of tomorrow no more infusions or transfusions. the dr said maybe a month but probably less.

Posh,

You know between the Lord and all your friends here your not taking even one step alone.

Mike

mike I thank God for each and every one of you! you are truely what family is about.

Posh - You and your father are in my thoughts and prayers. No matter how much you try to prepare yourself, you never really are. I pray his journey is peaceful. We are all here for you.

thank you tms. I spent the day with him and my brother today. all of us together one more time. we had a few laughs though and made some good memories.