My Husband was diagnosed with CMML in April 2008. We came out to Seattle, to the Seattle Cancer Care Alliance.We are from Florida. He had a double Umbilical Cord Transplant 2 weeks ago, August 26, 2009. he did not have a family match or an international donor. The SCCA does all the work for you, and was the pioneer in Bone Marrow Transplants, the only cure for CMML. Yes, it is true that it is a potential cure. That is why we came here. Our insurance company is covering the cost of living here, and the procedure. You must live in Seattle for a few months, conditioning time, and at least 100 days post-transplant. The social workers at the SCCA can help with logistics.

My husband is 55 years old. He is doing pretty well, with complications that are inevitable. Transplants are difficult, and there is no data for CMML, but there is hope! Go to their website at Seattlecca.org to find out more. It is a very rare disease and few others know about it. You will need a caregiver for the entire procedure. They need to be dedicted, and can not work or have other obligations at the time.

He had this disease for quite some time before it became neccessary for him to go through with the transplant, so as long as your disease is not accute, you have time to make plans, from what experience I know. It is important for you to get with doctors who know your disease.

I am going to copy this post and give it to anyone else with questions about CMML. I'm no expert, but I'm living with the experience, and learning as I go. I wish you all the best, and hope that you find the answers that will lead to your cure.

Hi Mary Carol,

We are in Seattle, and will more than likely be here through December. There

are ways to pay for this that I was not aware of. Since we are from Florida,

it seemed so far away and impossible to do, but it all worked out. Insurance

pays for many things during a transplant. If you do not have insurance,

email me back and I will suggest other things for you.

This is the post for another person who was interested in more information:

According to the staff at SCCA, it is not necessary to make plans well in

advance. They are used to people contacting them needing immediate care.

Another thing we found out is there is no such thing as an "emergency

transplant".

We found out in February that he would need a transplant, and he had several

rounds of Chemo with Vidayza before we came to Seattle. It worked well for

him as far as getting his WBC counts down. They want you to be in remission

if possible. The transplant is very serious, so you have to be committed.

When the day comes it's very easy to be committed.Let's face it, it's the

only option!

The SCCA has a doctor on duty to talk with potential transplant patients.

They actually call you back the same day, or the day after you call, and

explain everything. You can check out this site to find out more information

from them.

http://www.seattlecca.org/diseases/bone-marrow-transplant-overview.cfm

I have several emails about my recent posts. If you don't mind, I may copy

this for the others interested in this information.

I understand the frustration about CMML. Even some doctors called it CML

during previous hospitalizations. It was so upsetting that so few people

knew what this was.

I hope that you will find the answers to your questions, and the cure you

need. This was the only answer for us, and my husband is doing well. We have

a long road ahead, but we are ready for it. Now it's your turn to take

control of your health.

Love, luck and prayers!!

Rose

Hi Rose,

My husband was diagnosed with CMML last March, three days before we were switching insurance because we were moving from Oregon to Colorado. We moved to Colorado in July and by November had lost our insurance because of "a pre-existing condition".  Two months ago we were notified that the Veteran's would cover us because my husband was in Vietnam.  They have been great.  We are in the process of finding out if my husband is eligible for a transplant.  He is 61, healthy and fit still, so as long as a match can be found and all his other tests come out right he could become a candidate.  If we decide to pursue this route we will be coming to the Fred Hutchinson Center in Seattle, where I believe you and your husband are. That is where the Veteran's send all of their transplant patients. It is hard to think about all the transplant involves when my husband seems so good at this point.  His whites are elevated and his platelets are low, but we get out and bike, hike and enjoy life still.  It is hard to believe he has this disease, but bone marrow samples don't lie I guess. We moved to Colorado to be close to our 2 daughters and new grandson, so it will be hard to be gone for so long. I will be following your entries carefully and would love any input you might have.  I hope your husband is doing well, despite the setbacks, which I think often can occur.  We wish you the very best.  Sally

Hi Mary Carol and all the rest of you eith CMML diagnosis and questions,

As some of you know, my husband and I came to Seattle in July for his BMT. It turned out he did not have a match and had to have a double cord transplant. I want to stress to you all that he also had MRSA pneumonia in 2005, courstesy of an operation that was completely unrelated. The MRSA is a dealy virus that few people recover from.

Unfortunately, my husband passed away on September 29, day 34 post-transplant. His CMML had become accute and he had to go for it, and we were well aware of his odds. He had several complications, the first of which was pneumonia. I can't help but feel the MRSA had something to do with it. It was a fungal variety, and very rare in a transplant situation.

Now that I am back in Florida I hope I never have to go to Seattle again...unless someone I know needs a transplant, and then I would return with no hesitation. Although my husband didn't make it, it sure wasn't from lack of trying on behalf of the team. The nurses there were the first angels he encountered on his journey to the other side. The doctors and PA's were outstanding and so caring. I could feel their frustration at not knowing how to cure him.

I asked them previously how serious it was and they were honest, but not hopeless. They said it would take a miracle, but they had seen miracles. I had enough time to get his son to Seattle from Afghanistan, and the nurses and social workers helped me speed that along. His other son came from Florida.My step-son's were both able to spend some time with there dad.

They tried everything, but eventually he went into organ failure. They kept trying, and never gave up until I finally had to tell them to. Not once did they suggest to me that there was no hope, until the end when he went into cardiac arrest. Even then they were willing to keep trying. I knew he had no hope of a recovery, and I requested comfort care. He died the next morning, with his son from the service and me at his bedside.

I hope you are not discouraged by this post. I hesitated to write it. Sometimes things don't go the way we hoped, but sometimes they do. I saw lots of people leave the hospital, lots of celebrations, even reunions at 1 year post-transplant. Good things happen there.

Prayers to all of you touched by this mysterious disease. Hopefully the studies my husband had during his stay will benefit the next CMML patients who pass through the doors. If one of you is healed, it will make his suffering be so much more worthwhile.

Love, Rose

Oh Rose my heart breaks for you, I wrote u in Nov when my husband came to the u with cmml, I am still so confused we re still here he relapsed before we had the second marrow done and now we have completed another chemo treatment the day 14 bios came out like the first one clean and sure enough like the last time he is showing signs again as we approach day 28 marrow, his counts this time did not go as far down and we only had a couple of transfusion compared to the amount we had before, this doctors are wonderful and yet frustrated because we have worked so hard and my husband does not want to do the transfusions, he is suffering from being boned tied, nausea's still no weight gain, he lose 60lbs but can eat thanks to the drug to increase his appetite and all those nausea pills, he has a problem with swallowing due to enlarged glands which has become a problem with choking throwing up etc. Had your husband been sick and in pain prior to coming,  I am wondering about the chemo they plan to do to keep him going and how long he can do that before he has iron problems or the chemo effects, has anyone done this in the acute stage how long did they survives. I am so confused and scare what this next chemo will say.

thyee had given him a thirty percent chance to keep his live 3 years