[RC813]

Hi to all you very brave souls and I want to start out by thanking each and everyone of you for posting your experiences. From my limited research, I've learned that this is a pretty rare disease, yet here we all are..go figure!!

We are feeling overwhelmed as this dx of MDS came up outta left field for us. I still can't even pronounce the name of the disease so thankfully it has a nickname!!

Our story is that Eric, 49, was put in hospital at the end of July for kidney stones, possible diverticulitis, fever, extreme tiredness. He works at the VA hospital in St. Petersburg, Fl and gets treated at same. Had a team of docs all trying to figure out why he was so ill as it couldn't all be explained by kidney stones. After a week in the hospital, they discharge him and gave him f/u appts with primary care doc.

Lab work showed extreme low wbc, platelets and red blood so doc admitted him again and they labeled him as "neutropenic". So he wore mask and everyone who entered wore gloves and after 4 days of tests, they decided to give him a shot to boost his wbc and again discharged him.

All this time, I kept thinking, where is Dr. House when you really need him??? Seems to me that docs have a hard time dxing this disease because it is rare and even rarer in patients under 60, from what I have read.

They talked about a possible bone marrow biopsy but never told us why and for whatever reason, decided to just discharge him.

Thankfully, his primary decided to send him to onc doc who immediately scheduled the biopsy. We are still in a bit of shock. He had lost a ton of weight during a short period of time, but he was also sick from the kidney stones and diverticulitis so we attributed it to that.

Currently, he feels fine, appetite back. He had been extremely pale and as I understand it, that is from low wbc, and even though it's still low, he is feeling fine. Count our blessings?!!

His doc told him he has less than 5% blasts and good cytogenetics, I'm not sure what his subtype is but will find out next week when he goes for more labs. Doc said his bm looked like that of an 80 yr old and that is pretty worrisome to hear. He also can't believe that he appears as healthy as he does.

He told him that he would be neutropenic for life but didn't tell him about any diet as such. We looked into it when he was in hosp last time and keeping away from raw fruits/veggies, but that is so not easy as I am vegetarian and thinking how he is going to build up needed strength? Any thoughts on this would be most appreciated.

Looking forward to reading and learning from your experiences. I suppose the beginning of any new journey is overwhelming, but this can be a very scary journey to face.