Husband; 45 with MDS

[Michele H.]

My husband was officially diagnosed with MDS last November, just before he turned 45.

He has a blast count at 10%; White count of 2; Red count is 3; and platelets are 12 currently. He has received two rounds of Dacogen and two platelet infusions.

We are now waiting for a donor to be located as he has only half siblings. Does anyone know how much notice we can expect to receive before a transplant will be scheduled? I don't feel as though the doctor has been very forthcoming so far about what we can expect. He is being seen at UCLA.

[Whizbang]

Michele,

I was 45 when I was diagnosed with high risk MDS on 6/18/2013, they wanted me to go right to transplant on 8/19/2013... But I ended up getting my transplant on 10/31/2013 after two rounds of Dacogen, which took me into full remission... I did have a sibling match...

Timing for his transplant will depend upon his health, pre-testing, and of course his donor...

Check out my story here:
http://forums.marrowforums.org/showthread.php?t=3792

Best Regards, and God Bless...

[Chad S]

Michele H,
My wife was diagnosed with MDS last February and was put on an immediated path to transplant (she had 18% blasts and was considered high risk). After approximately a month they contacted us with the number of "potential matches." These are people that they will contact for further questions and testing. Many of these people have been in the donor registry for years and they must still be in good health and under a certain age AND agree to further testing which will determine if they are in fact "the match."

We were extremely fortunate, and by late April the transplant department at MD Anderson contacted us with the news that a match had been found. My wife's transplant took place on May 22, 2013, three months to the day after her diagnosis. She is an only child, so there was no chance for a sibling donor and we were completely dependent on a total stranger to make this wonderful donation for her.

I am not sure what is normal, but I am of the impression that my wife's transplant experience from time of diagnosis to transplant was extremely fast. But I do think they will know whether or not they have any potential matches within about a month.

This might be more detail than you need, but it might be worth knowing that my wife has a strong German heritage and is the first generation of her family born in America. And I believe that Germans are very well represented in the donor registry, improving her chances for a match. She had 40 potential matches that was worked down to two 10/10 matches.

She is young, her 40th birthday is in a week and I see your husband is also young. Youth is very favorable to transplant success and my wife is doing very well. I am sure your husband will do just as well and will pray a match is found soon.

Chad

[Neil Cuadra]

Michele,

If they find a matched donor for your husband, you don't have to agree to a proposed transplant schedule if you think you're being rushed. But when a transplant is needed and a donor is available, I think it makes sense to move quickly.

Once a possible donor is identified from the bone marrow registry, they have to be confirmed as a match, tested for medically eligibility, and interviewed to see if they are willing to donate. All this can take many weeks and often longer. If you're told about this while it's in progress then you'll have some advance notice. If they tell you about a donor only after he or she has been confirmed, then your transplant could be scheduled almost immediately. To be prepared, I suggest that you assume that a transplant could be arranged within weeks, if all goes well, even though you'll have to first wait for the highly variable donor-identification process.

The best time for a transplant is when the patient is as well-off as possible, which often means "before things get worse". The flipside is that if your husband's Dacogen treatment is improving his counts and increasing his strength and resistance to infection, there might be a case for waiting for further improvements. The bottom line is that your best chances are when you make the timing a medical decision.

When my wife and I decided to proceed to her transplant, our first impulse was to take time to plan our schedule a few months in advance. But once her hematologist explained the facts to us we realized that the rest of our lives had to go promptly on hold. We took the first available transplant date. My wife had MDS, was about the same age as your husband, and is now doing fine. I hope they find your husband a match and that it goes as well for him.

[Michele H.]

Thank you everyone for sharing your experiences. Hearing about the positive outcomes of patients close to my husbands age is very helpful.

We do not want to do anything that would delay a transplant. We live several hours away from the facility so I am concerned about making arrangements for our kids (3; one with special needs) and how long we may need to be away. We'll do whatever it takes but the planner in me is struggling with the unknown.

Chad S., my husband is actually of German descent also. I loved that you shared those details! It was great to hear that they are well represented on the donor list.

Whizbang; I was surprised to hear how quickly things moved along with a sibling donor. What a blessed gift to you!

It's not clear yet whether the Dacogen is working, but we hope to learn more at Friday's appointment. The bone marrow test results are supposed to be ready then. Tomorrow he will have a his first round of IVIG in an effort to boost his platelets. Low platelets were the first indication that there was a problem and they continue to plague him even after two infusions.

Thank you again for sharing and the words of encouragement.

Blessings to you all,

Michele

[Whizbang]

Michele,

I had my 1st BMB on 6/14/2013 - 5.5% blasts
2nd 5 weeks later and they showed - 3% blasts (before Dacogen)
3rd 10/7/2014 they showed 4% blasts after two rounds of Dacogen...
I insisted on the 2nd one before I started Dacogen (was unsure I wanted to do the chemo), but ultimately I am glad I still went through with the pre-transplant chemo, it was clearly the right choice...

What Dacogen did was put me into symptomatic remission with most of my counts going into the 'high range' of normal, and actually made me feel 'normal'...

This was great, as I went into my transplant strong, and counts high, which I believe has helped with my transplant recovery... I'm at D+96, since my transplant...

Only the Best!

[Chad S]

Michele,
I understand how the planner in you could struggle with the logistics of a transplant. I have built my career as a financial planner, so the planner in me is very strong as well. Many people that have traveled this path long before us have recommended to me to just take one day at a time. But I have two young children (2nd and 4th grade), so longer term planning had to take place.

I live in Dallas and my wife's treatment was in Houston, about a 4 hour drive away, and I wanted to be there with her as much as possible. I soon realized that it was not possible to be with her as much as I wanted. So I began prioritizing certain time periods to be sure I was with her during the most important times. Events such as her first round of chemo, the day of the transplant, the first 30 days, etc. quickly rose to the top of my list. I then worked with her parents and close friends to create a calendar and make sure she did not spend more than one night alone. She was in Houston from the beginning of May to the end of August and we achieved our goal.

My parents helped out in Dallas, trying to keep the kids school and social lives as normal as possible. I went for what we felt were the most important dates and when I couldn't be there during the first 30 days post transplant her parents filled in. When she became an outpatient (from day 22 to day 100) I would go when I could and her girlfriends paired up and would go two at a time for several days when I couldn't be there. It was difficult to plan and would have been impossible without family and friends, but we made it work. MD Anderson did allow children to visit the transplant floor so the kids did get to see her. It was SO HARD when they had to leave, so I'm not positive it was a good idea. But 4 months is just too long to go without seeing your children and it was a reminder to her of what she was fighting for.

Check with the hospital, local religious organizations (churches, synagogues, etc.) regarding housing. You will need somewhere to stay once he is released but needs to stay near the hospital (Days 30 to 100).

It sounds like a lot, but you can do this! Please enlist the help of family and friends, I don't see how it can be done without that help. And let me know if you need any more info regarding how we got it done.

And keep a journal noting his progress, reactions to medicines, doctors comments, etc. It is good to know when my wife has a horrible head ache that she has taken a medicine that has caused that in the past and not worry about the what if's.

Wishing you the best,
Chad

[Michele H.]

UCLA has confirmed 3 donors for my husband!

We expect to hear next week whether or not his cancer blasts are low enough to schedule the transplant. If not he will stick with his Dacogen regime for a while longer. Either way, we are so relieved to know that there are donors for him when the time is right.

I can't say thanks enough for the encouraging words from everyone here. They have really helped us to get through the waiting and the ups and downs of the last several weeks.

One of the things that happened during this time is that his diagnosis was revised from just MDS to also include CMML; Chronic Myelomonocytic Leukemia
Is this something that anyone s familiar with?

Thanks again,

Michele H.

[Cheryl C]

This Australian Leukaemia Foundation website has some easy-to-understand information about CMML - http://www.leukaemia.org.au/blood-ca...drome-mds/cmml

All the best! You will get heaps of support from this forum.