My husband and MDS

[bluegirlPA]

At the beginning of last year, my husband Joe was finishing up his third year as a radiology resident. He was busy with rotations including 6 weeks in Maryland and 4 weeks in Philadelphia. At the end of April we went on Caribbean cruise for the wedding of one of his best friends. At the end of May, we went on a trip to San Diego. While on the trip to San Diego, Joe was uncomfortable because he had a gum sore that wouldn't go away. It just kept swelling. This affected Joe's appetite, and when all was said and done he lost about 10 pounds. He was also very tired, but we just assumed it was from all the traveling he had been doing. Medical residents are ALWAYS tired!

After our trip to San Diego, Joe went to see the dentist who was pretty surprised by the swelling. He proceeded to cut it out, and all was fine, and it healed nicely. Shortly after, Joe's mom remarked that Joe was looking pale. This time we attributed to the fact that Joe just had a piece of his gum cut out and didn't think much of it. However, towards the end of June, Joe would feel like his heart was beating really fast even when he was just sitting still. Still he kept pushing off the idea of getting a blood test.

On June 23, 2006 Joe went to work as usual, but made a little detour in the hospital to get his blood drawn. Later, he checked his labs on the computer. The first page looked normal and Joe started to sigh with relief thinking, "gosh, I'm just a hypochondriac and everyone is going to tease me!" But then he scrolled down and everything was highlighted in red. All three of his cell lines were low. Joe grabbed an attending to look and see if he was seeing things clearly. The attending immediately called down to the hem-onc office and arranged for Joe to get a bone marrow biopsy.

Joe was sent home early, and we met at home and just braced ourselves for the phone call. When it came, the doctor said that Joe had AML of the M6 variety. There were a lot of tears.

We got a second opinion in Boston. A bunch more meetings and phone calls and tests later it was determined that Joe didn't really have AML. He had MDS. Were thought we should be relieved until we learned that it was high-grade (All three of Joe's cell lines were affected and he had chromosome abnormalities consistent with MDS.) Joe would need a transplant.

Shortly after Joe's diagnosis he was admitted to the hospital for 2 weeks due to a fever. While there, a drug reaction caused him to break out into a horrible rash on his 32nd birthday. His fever was reguarly in the range of 105 for days. It was awful. At the end of the hospital stay Joe was started on Vidaza - 5 day cycles every 28 days.

It was pretty amazing. Joe began responding to Vidaza towards the end of the first round. After that, he just kept feeling better and better, but we were still told that a transplant was necessary. We busied ourselves planning drives with the help of friends and CLLF. Joe was blessed and found a donor within six months. Joe ended up going through 6 rounds of Vidaza. This ended up perfect since the last round didn't seem to be as effective.

On January 3, 2007 Joe was admitted to the hospital for pre-transplant conditioning. On January 9, he had a PBSC transplant which took a whopping 14 minutes! Joe flew through all of it pretty easily. There was loss of appetite and some weakness but nothing he felt was unbearable. The rest of January went pretty smoothly. It wasn't easy, but it was easy compared to what we expected.

By February all the ups and downs started. For one thing Joe keep testing CMV positive. He has tested negative a few times after various treatments (Ganciclovir, Foscarnet, Cidofovir) but as of today (May 17) he has been positive for close to 3 weeks. Fortunately, he has not exhibited any symptoms, but it feels like we're playing with fire. Currently, he is on Ganciclovir and Cidofovir. The Foscarnet worked very well - but Joe ended up with a very painful side effect, so we're trying to avoid it if possible.

Also since February, Joe's graft has gone from 99% to 89%, back up to 99%, then down to 67%. Joe has been given two 5 day cycles of a quarter dose of Vidaza so far to try and save the graft. The first time was effective. On Monday, May 21 Joe has another bone marrow biopsy to see if the second time is effective. This biopsy is REALLY important because Joe's counts have not been so hot lately and the doctors seem to be losing hope in the graft. And today's blood draw showed dysplastic neutrophils.

If the graft shows improvement, which would be a bit of a miracle (but we're still being optimistic) Joe will continue on monthly Vidaza. If the graft does not show improvement then Joe will be prepped for a second transplant with a different donor. He will be treated like a patient with AML and go through induction chemotherapy and low-dose full body radiation.

Karen

[bluegirlPA]

i actually wanted to share more...but i deleted whole paragraphs because of the word limit...and now i have to go. so another time.

but if you're curious, our full story is at http://joekaren.blogspot.com

[Marrowforums]

For those not familiar with the CLLF, it's the Cammy Lee Leukemia Foundation, one of the official recruitment groups for the National Marrow Donor Program.

The CLLF works to increase the presence of Asian and Pacific Islanders in the bone marrow registry (they are currently 8% of registry members) and to raise awareness about leukemia and related diseases in the Asian and Pacific Islander community.

[bluegirlPA]

Yes, so the main things that I wanted to add was what marrowforums already explained about the Cammy Lee Leukemia Foundation (thanks!). We are Asian (Taiwanese) so Joe's best chance for a match would be someone Asian. Although we heard that only one person ever, has found a bone marrow match through their own efforts, it was still important for us to plan drives and raise awareness for the sake of others like us. We were able to meet Cammy Lee in person and are now good friends. She herself has an amazing story.

The other thing I wanted to say is that although our situation is not looking ideal and we are not excited about the prospect of a second transplant...Joe and I have grown so very much in the past year. We have grown in strength, patience, perserverance, grace, and faith more than we could have ever thought possible. Joe in particular has just amazed me each day with his ability to deal with his disease. No matter what his next biopsy result shows I'm so confident that he (and we) will be able to overcome every single obstacle in his way. I just know it. People say we have extreme positivity, and if I have anything to do with it, that is not going away any time soon!

Karen