MDS Complications

[Becca11OU]

I just thought I’d ask everyone from their experiences if it is typical to have a multitude of other problems occur because of your MDS diagnosis?

I feel like over the past year, my husband has had more than his fair share of problems and been in the hospital as much if not more than he has been home, ranging from pneumonia and lung problems to stomach abscesses to nearly passing away from a multitude of issues.

What I wonder is if this is the norm or if he’s just been dealt a rough year? I feel so awful for him and know that he is just so tired of being sick. We have two young children (almost 3 years old and 1) and pretty much since our youngest has been born he has had some major struggles. I’d love to hear some thoughts from other folks, and maybe some ways to encourage him. He tries but I can only imagine how emotionally challenging this has to be for the people that are actually going through it…

Take care.

[Zoe]

I have been sick time after time this year. I have wondered the same thing because previously I hardly ever got sick. It has been a bad year for illness, at this point I am contributing it to that. My girls have all been sick this year also, so I think it is just a bad year.

Zoe

[Frankie]

Hi

In the last 4 years, I’ve had pneumonia twice and lots of bronchitis brought on by my smoking for many years. I now have COPD. My joints ache…from what I’m not sure. I have Osteopathy….a “prequel” to Osteoporosis.
I think I have side effects from the Exjade I’ve been taking. I have searing pain in my lower back…pulsating pain.

God only knows what other things have been brought on by our immune systems being so crappy. In the past, I had a mastectomy and a lumpectomy.

Of course, my age might have something to do with it. I’m 66.
Oh…I just found out I have cataracts. I’m having bad bowel problems and I’m scared to death to have a colonoscopy.

I have learned to hate my doctors. I’ve had problems with them hearing me and understanding.

-Frankie

[camiboxer]

My dad (68 years) was dx’ed nearly 2 years ago but had signs of MDS (bloodwork) for probably at least a year prior.
For whatever reason he hasn’t had anything other than a slight cold that was short lived since diagnosis.
He has been lucky so far and is still not receiving any meds for his condition and has never had a transfusion. I contribute it to his stong faith.
He does suffer from constipation but was told it was probably the meds he takes for his heart issues. He manages it with Miralax daily. I never thought about it possibly being related to MDS.

[Zoe]

Frankie,

I hear you about medical professionals. Honestly, I feel blessed with my PCP, but if I have to see the other CNP, I dread it. I think she believes I am a hypochodriac this past year.

I get the achy joint thing too. I also get that creepy, crawly feeling all over my skin. There is a link between MDS and autoimmune disorders. I am starting to wonder if I have developed fibromyalgia or something. I have so many unexplained pains any more. Some are quite severe, but they come and go, so it is hard to know what to do. I am only 48.

Zoe

[Russ P.]

Rebecca, MDS can cause all sorts of infections from a compromised immune system, bleeding with low platelets and fatigue with low hemoglobin.
You don’t mentions the particulars of your husbands CBC or where he is being doctored. Take all precaution against infection and have him get checked regularily by an expert hematologist.
God Bless,
Russ

[frank]

Rebecca,

beside the health problem, i think the small children may also the reason for your husband sick. i remembered the time when my twins turned to 2, i had the worst year… but things are getting better now, they will be 4 year old on augest. they are getting better, and basically i only get 1 infection for last year.

hope it help.

Frank

[Becca11OU]

Thanks for all the responses. It’s nice to hear other’s thoughts as well.

My husband has “unclassified” MDS. They believe his Aplastic Anemia (which was considered very severe) has turned into MDS, due to the changes in his chromosomes. He has monosomy 7 and did not have blasts as of a year ago and now has about 5% in his bone marrow. He had a round of ATG last summer for his Aplastic Anemia and has had nothing but problems since. I realize that at the time it was the only chance we had for a possible cure (since we are unable to find a bone marrow match), but since then things have gone downhill. I also get that with the MDS comes a compromised immune system, but he has just had one thing after another. I guess I just wonder if this is what to expect or if it might get better!

His blood counts bounce a bit, as most of you know, but his WBC is usually between 1-2, his ANC is typically under .5 and his Hemoglobin ranges from 6 – 8 or so, usually no better than 9. His platelets are actually the best they’ve been in ages, between 90-115. They were around 15 – 30 when he was first diagnosed, but they drop low when he gets sick again.

Thanks again for your input.

Frank – I thought about the possibility of the kids having something to do with it, but they seem to have not really gotten sick this past year. Then again, maybe they were a “carrier” of the germs. If you don’t mind me asking – how do you deal with the kids when you aren’t feeling well. It is very difficult because we have to keep them away from him because he often is so sore or cranky and has tubes/drains everywhere that the kids could accidentally pull at. He loves them to death but is not the same with them as he used to be, which I totally understand. I know how hard it must be on my husband, but the kids need their daddy too and sometimes it’s just very difficult.

Take care,
Rebecca

[frank]

Rebecca,

basically my kids give me a lots during the 2 years old period after they went to daycare, i probably got infection 10 times during the winter time, same as they do, especially i do take care of them during their sick, that is the reason. My wbc is low, too. 1.8-2.4 range, so i have to be very carefully to do everything arround them. but taking care of them may contribute to my sickness, too. Since i cannot have enough sleep and rest. i remembered that i sometimes took shot for bosting my white count(once a month, neupegen???), it helps. also i did go outside with them everyday(stroller them out), it may help, too.

Frank

[MNladyslipper]

Rebecca,
My husbands counts are very similar to your husbands. He has a lot of chromosome damage however. He is tentatively scheduled to go to The Univ. of MN – Fairview on July 21 for a double cord blood transplant. They couldn’t find any other matches. But we are cautiously optimistic, it sounds as though the cord blood may be the wave of the future. You may want to research cord blood transplants as a possibility for a transplant – sooner, rather than later. His age is in his favor. Good Luck!
Bev

[Becca11OU]

MNladyslipper,
The doctors have briefly talked about cord blood transplants but were concerned that because of my husband’s size (he is 6’6″, although rather thin), that one would not be enough and they thought there could be potential dangers in using two different cord bloods. We are meeting with the doctors next Tuesday to discuss the next steps. They had also briefly mentioned a newer drug to try, some steroid that is supposed to increase your blood counts? I wasn’t there for that meeting so don’t know too much about it.

When you say a double cord blood transplant, does that mean they are using two? Did they seem to think it would have a lot of risks? I’d be interested to see what they said to you, as our doctors had some reservations about that. We are currently at the Cleveland Clinic and I do feel we are getting great care. I think the problem is that my husband has had so many complications and problems, they are trying to weigh out the best options. I also realize, however, that the only shot at a cure is a cord blood or bone marrow transplant…

Thanks for the insight.
Rebecca

[MNladyslipper]

Rebecca
My husband is 6′ and was about 220. He is now about 190. He has had a lot of issues since diagnosis in late January. He had an attack of diverticulitis in April,a sinus infection, mouth sores, surgery for the diverticulits, a couple of crashes where his hgb dropped quickly, and a helicopter transport to Mayo because they thought his Revlimid might have been causing blood clots. He has had five transfusions. They use two cords for large adults. Research seems to be indicating this is the way to go when you don’t have a 100% match. Cord blood cells are naive and will usually engraft and do what needs to be done to restore a healthy marrow. The risks are about 33% it will take and the recipient will go into remission, 33% it will fail and nothing will be changed, and 33% that he will die. But when faced with the certainty that he will die without it, the odds are in our favor. We are doctoring at Mayo in Rochester, MN. They do not do cord blood, but have referred to Fairview at the University of MN. They are probably the leader in cord blood transplants. To my knowledge, there are only four centers in the U.S. that do cord blood, but more are attempting to be certified. Hope this helps.
Bev

[jaxem]

Rebecca & MN
there are a lot of centers doing cords but only a few that have done a large number. Fairview has done many more than all others. The most recent Cord Blood convention had a lot of speakers giving reports but Fairview had the most reporting. I don’t know any centers doing only SINGLE cords anymore. All do double to add as many stem cells as possible. The 2 cord types will fight it out with one becoming dominant. It actually has been found to strengthen the emerging cord. To qualify for the procedure, you need to meet stringent requirements, the greatest being much less than 5% blasts. My wife washed out at Fairview but we’re there right now trying to qualify for a haplo Natural Killer Cell/Stem Cell procedure using our son’s cells. It is a trial procedure & only Fairview does it. Through much research over the 2 1/2 years my wife has been fighting this disease which has now turned to aml, Fairview is the place to be, and we’re from NJ.

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