Husband has MDS

[KathyM]

Hi Everyone-
This is my first time posting although I have been reading here for several months. My husband Dennis was diagnosed in October 2012 and will be haivng a bone marrow transplant at the end of this month. We don't have a definite date yet.

Even though we have tried to educate ourselves about all of this, we are still in a state of disbelief. He has just finished his 4th round of vidazza and is doing very well. He is still working and other than some tired days and doctor appointments he has hardly missed a day. It still seems like someone will call and tell us "it was all a mistake, we spelled your name wrong"

It is still so surreal. I did email the transplant coordinator today and asked for a more specific diagnosis which I posted on my signature, but honestly, I have no idea if this means anything good or something bad.

Can anyone tell me what all this means? I do ask the doctors, I do research but still - it makes no sense to me.

My H has an identical twin brother - at first we were so excited but as it turns out they do not want to use the twin because of the type of mds he has; they say the relapse rate would be extremely high with the twin but the gvhd would be very very low. He does have a donor (10/10 - 19 years old, male). However, with the unrelated donor the risk of relapse is low - but the risk of gvhd is high. More or less, pick your poision. He has decided to go with the unrelated donor.

I am so scared. Not that a diagnosis like this could ever come at a "good" time - this diagnosis came at a time in our lives where our children were grown, educated and living lives of their own - we are in the best financial shape of our lives after working hard for 37 years - my H just landed his dream job - 3 weeks later he got this diagnosis. All of our hopes and dreams, dashed in a phone call. I still struggle with the "why" and I'm so angry.

I have always been "glass half full - things work out for the best" type of person. But I am really struggling - why does life go on for everyone else?

I feel like this post is all over the place and I'm not sure I'm being very articulate. I have never posted on a forum like this and I don't even really know "what" I'm asking.

[Julianna]

Hi Kathy. I do understand the shock of it all. I'm sorry I can't help much with your diagnosis stats and all. All MDS is very individual. Hang in there. You're not alone. These rare diseases do make life a bit difficult! Glad you came here & shared a bit of your story. There's lots of others here who you can chat to whenever you need.

I so understand about life still going on around you while your world is falling apart! Hang in there. And keep talking. It does certainly help to share your struggles. Hugs to you! I'm sorry this so hard. Take care.

[DanL]

Kathy,

I am sorry to hear about the whirlwind tour that you and your husband have been through since October. The learning curve for MDS is steep and challenging. Here's what I see in your husbands diagnosis

"bone marrow biopsy confirmed significant fibrosis and blast cells of 5%-10% of the total cells, high risk refractory anemia with excess of blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21"

Fibrosis simply means scarring of the bone marrow, and can be mild to significant. It is fairly common. The key is whether the fibrosis is made up of reticulin or collagen. While both are curable, the reticulin fibrosis is less severe. Blasts are immature cells that are found floating around in the marrow or blood. Generally speaking, a normal, healthy person has less than 4% blasts in the marrow and none in the circulating blood. Refractory anemia means that there is at least one blood line (platelets, red blood cells, or white blood cells) that is low on a regular basis without intervention. The cytogenetic markers show that there are problems with his chromosomes, which is very common with the disease. Chromosomes come in pairs for most people, but in MDS we have all sorts of abnormalities: +1 means an extra copy of chromosme #1, -7 indicates that there is only one copy of chromosome 7, and +21 means that there is an additional copy of chromosome 21. Because he has three abnormalities, this is considered a complex karyotype, which is one of the risk factors that earns your husband the "high risk" designation. I would venture to say that nothing in an MDS diagnosis in itself is good, and the details don't matter as much as the fight ahead and determination to win.

I am hoping that this explanation helps explain what the diagnosis means.

Your question about how life can go on for everybody else is difficult. I was 37 when I was initially diagnosed and have 3 children under 15 years. I think that the answer for me has been to learn how to live life and appreciate what I have everyday and decide to continue to live normally so as to not be defined by the disease. It certainly can be consuming, but this does not help you or your husband. Your confidence, energy, strength, and determination are what will get both of you through this.

It is really great that your husband has an allogeneic transplant match.

[Neil Cuadra]

Kathy,

Many of us have been through the same shock that you and Dennis have. In my case it was my wife's diagnosis; I'm the caregiver, as you are. The diagnosis is very frightening and it makes no sense because you may not have known anything was wrong, it's just numbers on a lab report, you can have MDS but still look fine, you didn't spend your life living next to a toxic waste dump so there's no reason you should have developed MDS, and you certainly don't deserve anything like this. In most cases the cause of a patient's MDS can't be determined. It's frustrating but we have to concentrate on what to do about it.

I'm really glad to hear that Dennis is responding to Vidaza.

DanL did a great job explaining the information in your forum signature. You should know that -7 (monosomy 7) is considered a higher risk abnormality than others they might have found. When people have +21 (trisomy 21) at birth then it causes Down Syndrome, but if it develops later, as in this case, then I've read that it doesn't change the prognosis one way or another when you also have -7. I don't think +1 (trisomy 1) is a specific risk factor, but it contributes to the number of abnormalities.

My wife also had multiple chromosome abnormalities, including trisomy 15, and they found different abnormalities in her successive bone marrow biopsies, so we knew she had a number of chromosomal problems and that it was possibly evolving. That led us to the transplant decision, and I'm glad your husband has matches for a transplant. Vidaza can get you out of danger but a transplant is the only way to cure this disease.

When it comes to ideal unrelated donors you can't do much better than a 19-year-old male with a 10-of-10 match! My wife's donor was older than that and was a 6-of-6 match but the transplant was a definite success. Right now you have to concentrate on coping, learning about MDS, and learning how to help yourselves, but as the transplant approaches you'll find many forum members who can offer advice and support about it.

I hope you can adopt the attitude that your hopes and dreams are postponed, not dashed. It was hard for us to think much about the future when things looked gloomiest, but we got our future back (minus the time we spent in active treatment) and decided not to look back. It's OK to be mad at MDS. We're still mad at it ourselves, but we channeled that into fighting back. We beat MDS and so can you and Dennis.

[MDSPerth]

Kathy, reading your story brought tears to my eyes. It all sounds so familiar and still so raw. I too am the partner of a now 62 year old diagnosed with MDS in July 2012. You can see Paul's profile below. We too (like most people on this web site) still have imprinted on our minds that phone call out of the blue that changes your life forever.

But, here we are, 8 months since diagnosis and on the outside at least, all still appears to proceed as normal. In a lot of cases, as in yours and my husbands, the diagnosis can come from routine blood tests and there may not have been any prior symptoms, so it is really a dreadful shock.

I can only liken what you are going through as a 'grieving' process. And by grieving I mean as in the loss of the life style we thought we had ahead of us. And yes, I have been sad, I have been confused, I have been angry and at times still am. And yes I ask the doctor "Is there any chance there is a mistake". (He laughed - probably hears it from a lot of people). I too still question the "why us" but then again "why NOT us". Have these emotions by all means, but do not let them overide the positives that are there for you.

Positive - he has a match. Positive - there are many people that have had very successful transplants - just read this site. Positive - he is young and does not appear to have other ailments. Positive - medical science is so good these days.

In our case, neither of Pauls siblings were a marrow match, and each time we visit the consultants we still await news that they have a matched unrelated donor for him. But, as time moves on we have to focus less on that area and make the most of what's ahead. For Paul - growth factors (EPO & G-CSF) are currently keeping him 'ticking over'. His medical team are delighted with his response - and, whilst he remains 'symptom free' we are making the most of it.

Kathy, as difficult as it may be, go forward into this transplant focusing all your energy into the positives. You have done the right thing to come to this forum. One of the hard things with Myelodysplastic Syndrom is that it is an unusual group of diseases, and the majority of people have never even heard of it - let alone be able to pronounce or understand it (like us). There are a lot of people on this website that can answer your questions about what is ahead for you and Dennis or when things crop up.

The best thing you can do is stay strong and positive for Dennis, he has a lot to go through. I will say though Kathy, sometimes I am not sure if its harder being the carer or the patient! (no disrespect meant to the patient )

Best wishes
Sandi

[Al's Wife]

Kathy,

I can't add much to what the others have said above. But just know that "this too shall pass." It will get easier - and then maybe harder - and then easier - back and forth. That's why so many of us say it's a roller coaster ride. But your husband has so many things going for him, like his age and health, other than the MDS, that hopefully he will have a positive outcome.
If you didn't see it on 20/20 a few weeks ago, pull up the video of Robin Roberts' interview on 20/20. While some of it may frighten you, at least you will get an idea of what to expect if y'all go to transplant.
My husband, unfortunately, was not a candidate for transplant and he now has leukemia (AML). So I've just had to learn to be thankful for each and every day.
Most or maybe all of us on this forum have been where you are and experienced the same emotions. But I promise that it with time you will be able to deal with it better - at least most of the time.
God bless you and your husband. I'm just sorry that we had to "meet" this way.

[DebS]

Hi Kathy,

I have just recently become a member of the forums and I had missed your post. Looking at the timeline, you might be doing the transplant now. If that is the case, I am sure everyone is keeping you and your husband in their thoughts and prayers.

I am amazed as always, by the kindness and thoughtfulness displayed on these forums. If you are ever feeling discouraged and low, this is the place to come!

My husband, like yours, was diagnosed with MDS out of the blue. It was at his annual physical that the doctor detected his low blood levels. He came back to him and said, "We have a problem!" He then proceed to hand deliver the results to the hematologist/oncologist on the floor above him. Then we were off to the races!

We had no idea when we were praying for Robin Roberts in September that we would be facing the very same thing in December! You are right. It is never a good time. It is unfair and an unbelievable shock! My husband and I have always been optimistic people as well. But right now it is hard. Although he is still doing a great job with that.

Take each step one at a time. Ask questions and then ask more questions. Do some research online, but don't drive yourself crazy. I really overdid it when we first had the diagnosis. And I was not looking in the right places. One day on this forum and Neil gave me information that I used in one hour to learn more than I had in days. So this is definitely the place to be!

I hope all goes well with your husband. Please know that you are not alone!

All the best!

[Nancyann]

Dear Kathy ~

I cannot offer you much except support and prayers. I am walking this journey with my father and it is very overwhelming. Take it one day at a time and try not to focus on the big picture -- each day is a new day. I will keep you close in thought. This forum has been helpful to me in the few weeks I have posted and "lurk" around.

Nancy