[Mark Rogers Mark]

I have not posted in several months since my blood counts have remained fairly stable. In February of this year I had a bout with norovirus which almost killed me and I was hospitalized for 4 days.. Norovirus is a GI virus and produces extreme vomiting and watery diarrhea. It also had strong negative effects on my bone marrow and my counts dropped suddenly… After I was released I got two units of blood but that only lasted a month. Last week I had another transfusion of two units…I don’t feel nearly as boosted up after the second one as I did the first one.. I see my hematologist next week and will get a CBC the day before… If I end up needing blood more often I may just quit and let go… I am beginning to eat less, lose weight, and sleep a lot.. Also have low energy and shortness of breath all of which fits the picture

I have been reading posts re: end stages just wanting to know what to expect… Its all very sad and I’m not sure my wife is really prepared for all the pain and sadness but she is a strong woman and has cared for loved ones in her family as they get old and eventually pass so here we go again…

[Mark Rogers Mark]

I have been in this group for a long time but have not posted in a while… My blood counts have remained stable for over a year for which I am thankful.. I recently had a bout of norovirus, an bad intestinal virus, which really hammered me and I spent four days in the hospital.. It seems it also hit my bone marrow and my cell counts along with my Hemoglobin went very low. My hematologist gave me two units of blood which has helped me considerably but I do not know if my bone marrow will remain affected by this virus or not… Its just a waiting game for now… I will try to stay more active on this forum in the future…

I have also been told that the VA will not recognize any medical condition not on the ‘Presumed List’ which really sucks since there are so many of us that have been affected with this from our service in Vietnam…

May God be with you all…

Mark

[Mark Rogers Mark]

Alma: That’s quite a story and I fear that Vidaza might be a similar torture for me even though others have had an easier time.. My Hgb is 9.4, WBC about 2200 and platelets dropped to 62. My Doc won’t start me on transfusions saying at the level my Hgb and reds are it may cause blood clots/stroke. I have just yesterday come down with some flu like infection which has me drained. That plus the anxiety are really dragging me down. I don’t see my Hematologist until Oct 17. My PTSD causes horrible panic attacks which when mixed with the MDS symptoms really drag me down. I read about all the people who have tried the experimental treatments and admire their courage but that is not for me…I’m having a huge problem with anxiety as it is.. Thanks for all your input…

Mark

[Mark Rogers Mark]

I am about to start treatment with Vidaza. My white blood count has been dropping for many months and my Doc wants to start in October. I have been really afraid to start this and was on the verge of saying “no thanks and good bye” but the replies above have given me some hope… I am 75 and a Vietnam veteran which is where I got it I’m sure. Everything there was toxic…Agent Orange, Jet Fuel, and for me, Malathion. I am encouraged and think I’ll try it at least..After that we shall see. Thanks to all of you for being there for all of us who have this awful condition.

[Mark Rogers Mark]

I am a Nam vet and have MDS. I filed my claim with the VA 8 months ago and have not heard one word from the VA except a phone interview with a VA doc in the SF Bay Area. So far nothing has come of that. My CBC’s remain stable for now with a hematocrit of 27 and Hgb of 9.5 or so…My hematologist here in town says if another chromosome mutation occurs all will likely come crashing down. I was exposed to AO,Benzene,and Malathion…God knows what else. When my Doc says it’s time to start treating me I may just refuse and let it go..Epogen and Procrit only last for a short while anyway… Like the saying goes…”A lot of soldiers were killed in Vietnam, but not all have died yet”

[Mark Rogers Mark]

Just had another CBC drawn and my Hct is down to 27.7 from 31 last May and it’s been pretty steady until now.. Not sure when Doc will start Epogen but I’d like to know from others when they started… I also read that it can cause tumor growth…all we need is more cancer :(. Please chime in with your stories on Epogen or Procrit. I did read that success is limited and only works for a while on a different thread here.

• This reply was modified 5 years, 5 months ago by Mark Rogers Mark.

[Mark Rogers Mark]

I filed my claim with the VA on Tuesday thru the local VSO..I know it will be a long, uphill ordeal and I likely won’t live to see the day the VA accepts responsibility, but at least when they do my wife will begin to get 50% of my benefits since I’m 100% but only for 3-4 years.. With all the people who have this from VN service and the incidence numbers its really sad and frustrating to have them in such denial.

[Mark Rogers Mark]

Thanks Ray
I looked it up on Mayo Clinic and it told me a lot…survival rate would be about the same for me as if I didn’t have it…Side effects don’t look like fun either…Add to that, I’m not healthy enough to withstand it… I wish you well, my friend

[Mark Rogers Mark]

Ray,
Interesting…not what I had read about SCT/age limits… Was it a scary and or risky procedure ? I have an appt with UC Davis Oncology in November and will ask about this..

[Mark Rogers Mark]

Ray,
Thanks for posting. The problem is that the VA does not yet take responsibility for MDS in Vietnam Veterans..It’s just like everything else…we need to keep pounding them with number of us with this condition I am filing a claim but likely will not live to see the success we achieve. As far as SCT goes I am considered too old to be eligible for this treatment anyway. I think the age for which any medical facility will consider SCT is 65, or so I’ve heard…

I’m not at all surprised that the VA hospitals will not treat MDS since it was ‘not their fault’ to start with, which, of cours is total BS…It’s an up hill fight

Mark

[Mark Rogers Mark]

Meredith:
I’m sad for your husband but I have a similar blood profile myself. My WBC’s are labeled as ‘critical’ by the lab and Red cells are dropping too. Almost all the cells are abnormal. I am filing a claim with the VA when I can get well enough to go to the local VSO. I thank you for that stat you posted about the incidence of MDS in Vets as opposed to the gen pop. As you likely know there are several MDS Foundation centers around the US and hopefully they are trying new stuff to help. I live too far from one but will be seeing a Onclology/Hematology Dr in Sacramento in Nov. To answer your question: No I don’t think there’s any way to push the VA to take responsibility for this except to keep adding claims to the pile, which is what and why I’m doing it. God Bless you and your husband and I pray for us all…About all I know to do

Mark R.

[Mark Rogers Mark]

Ray,
Thanks for the reply and input. I’m glad for all that you have taken up the fight. As soon as I get a testimonial letter from my hematologist I’ll push the claim forward, but, like you, I will likely not live long enough to see them adjudicate this to a postive outcome. I see my Doc tomorrow and hopefully he’ll have the letter ready. He as told me that he has several Vietnam Veterans as patients all with various forms of MDS.

God Bless

Mark

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