[JaniceR]

Hi Susan: I’m in the same boat as you. My 71-year old dad got diagnosed two weeks ago. I’ve been reading non-stop. He has RAEB w/monosomy 7 and 15% blasts. A high-risk case. We found a specialist with the help of this forum at New York Presbyterian and this Sunday we check him in to undergo a clinical trial of Arsenic and Ara-C. Everyone here is SO helpful. You fist have to find out what type of MDS he has, what percent blasts he has and what chromosome is affected. When you have that information, you can find tons of statistics on his prognosis… but alot of them are outdated and with new treatments coming out every day, I’m hopeful now. Everyone case is SO vastly different. What I found out is that my father started eating one whole pineapple a day and drinking a gallon of water a day… and his counts have improved. Also… no alcohol whatsoever. Go to the pathology dept. of the hospital that gave your dad the diagnosis and get his report and bone marrow slides for the specialist to review. In the meantime, read his report and blood counts and google everything!

[JaniceR]

Caroline: That’s “funny” that your dad lost interest in beer. Every doctor we saw never said a word about stopping the drinking of alcohol until I said something to them. Then they were all “OH, absolutely NO alcohol whatsoever. It directly affects how your bone marrow works.” I have to wonder that if I didn’t mention it, would they have told my dad NOT to drink any alcohol? It totally makes sense. I was reading how alcohol affects all your blood counts AND your immune system. If anyone has MDS they should NEVER touch a drop of alcohol.

[JaniceR]

Esme: I went on Hans web page yesterday and damn near cried. You two are SO cute. I love the Hans und bier picture. Dear to my heart since my dad and I always went to our Oktoberfest in Germania park for the beer, bratwurst and dancing. I, too, am sending heartfelt vibes your way.

[JaniceR]

Hi Dee: I heard of people putting a whole pineapple in the blender and drinking it through a straw to avoid getting sores. Did you see what Esme wrote about Hans getting his platelets up in the 300’s when he eats pineapple? That’s just amazing.

[JaniceR]

My father’s been eating a fresh pineapple everyday. It definitely helped raise his platelets. I can’t find where to get the black sesame seeds though. I live in NJ, but we’re checking my dad into NY Presbyterian for his clinical trial (Arsenic and Ara-c) on Sunday. Any ideas where I can get the black sesame seeds?

[JaniceR]

Hi: My father has been eating one whole pineapple a day for less than one week and his platelets went from 27,000 to 39,000 in 5-6 days! I don’t know if that’s a coincidence or not, but I got the pineapple advice from this forum and I figured what can I pineapple hurt.

[JaniceR]

Thanks lynette. I hope it works for my dad as well. Do you know if it doesn’t work, can it damage any other organ, i.e., heart, lungs, liver. If this trial doe not help him, can it actually hurt him?

[JaniceR]

Lynette: Oh, thank you! That’s the same doctor we are taking my father to see on Monday! I’m so excited now that I heard such good news from you. The same doctor! Wow!

[JaniceR]

Lynette: Who is your mom’s Doctor at NY Presbyterian? Complete remission?… Now THAT’s encouraging and so EXCITING. You know, I might actually get some sleep tonight after seeing your post.
Kristyk: That is exacty what I’m doing now. Everything we planned on doing this summer with my dad, I’m crying about thinking it’s not going to happen. And the thing is, he keeps talking about all these plans because he doesn’t know just how bad it really is. He’s not reading what I am on the internet. All’s he got from the doctor was “it’s treatable with Vidaza and we have to keep a watch on you.” I’ve been doing all the research…not telling him the grim details and looking for hope. Your mom’s news is also encouraging. The decitibine is working?
Seekay: I’ve been googling all the things you told me to. That’s also very encouraging. I’m excited that there’s other options besides relying on chemo. Thank you.

[JaniceR]

Yeah, dad’s amazing. I’ll let you know Monday how it goes. Seeing that your dad’s 83 makes me smile.
Thanks!

[JaniceR]

Sugarwhale: Wow! Thanks for that… it’s very encouraging. I’m printing out your post and giving it to my dad.

[JaniceR]

Hi Eve! Ooops, that’s a typo… haven’t been sleeping much. I meant HGB!

[JaniceR]

Hi eve:
I’m not sure if I have the hang of this posting and e-mailing thing yet. I’ve never been on a message board/forum or chatroom, etc.

[JaniceR]

Thanks Suzanne! Who’s Neil?

[JaniceR]

When everyone is talking about tx does that mean a total transfusion?.. or is it just receiving blood in any amount. My dad’s blood counts on Tues. were: WBC 2.1; RBC 3.01; HGB 10.5; HCT 30.7. They gave him 3 pts. of blood two weeks ago in the emergency room when he arrived due to concerns about routine blood tests for cataract surgery. The results came back that his HBC was 4. Needless to say, he did not have the cataract surgery and was dx w/MDS. He was walking around feeling fine with HBC of 4! Now that he’s up to 10.5 he feels like superman! My poor mother 😉 Hopefully, it’ll still be up when we go to Dr. Feldman this Monday. I told him to eat a ton of pineapple between now and then and lots of veggies. The Monosomy 7 and 15% blasts are what has me crying constantly. Everything I read says that this chromosomal disorder makes him drug resistant… so why are they talking about putting him on Vidaza? Guess we’ll know more when we talk to the specialist on Monday. My dad looks, acts and feels more like someone in his 50s! 5 children and 21 grandchildren to live for! Thank you all for reaching out to me!

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