[g-masews]

Ask for a copy of everything. Pathology reports, CBC’s, etc. It won’t make any sense to you for a while, but as you learn more, you will be able to read them better. You can’t possibly remember all the dr.’s tell you so keep all your reports in a file to refer to as you go along.

[g-masews]

My husband was diagnosed 5 1/2 years ago with RCMD, high risk due to several chromosome abnormalities. Doctors advised transplant, which he chose not to proceed with. He was 54 at the time. His red cells are his best line and never drop lower than 10 therefore he has never needed a transfusion. His white cells are low, but he never seems to catch a cold and his platelets have been dropping slowly over the 5 years, but not a problem yet. He gets a CBC twice a year, and is stable. According to the WHO prognostic scoring, there are only 7% of people in his catagory still alive at the five year mark. We just go through life each day no longer worrying. He still works full time and you’d never know he had this disease.

[g-masews]

Close to yours. He has trisomy 8, del 20, and also tri 3. That was 4 1/2 years ago. Don’t know if there’s been any change since then.

[g-masews]

Chuck, this might be embarrassing to say but he has no doctor except our family doc. We were with Kaiser when he was diagnosed and they wanted him to go the transplant route right away. He declined. Two years ago he went through several job changes (5 in a year and a half)and a different insurance company with each job, so he just didn’t see anyone. We consulted with one doctor at Rocky Mt. Cancer just in case something happened, we would have someone to call. That dr. said she couldn’t tell anything without another BMB, but before we could schedule anything, we got notification that she had left the practice. So he never bothered to get it and I think he operates on the theory that if no one touches him, he’s fine. Can’t blame him, it seems to have worked so far. I do know that he is still in their files (RMC), if we need them. He gets a CBC every 3-4 months through our regular dr. and he watches the counts. Other than platelets, he’s stable. Low but stable. I imagine if the platelets start dropping too much, we’d notice something, right? His don’t fluctuate, just a steady drop slowly over 5 years. We live in Littleton (Highlands Ranch, actually).

[g-masews]

Hi Chuck…welcome back. I remember when you first came on the forum as your diagnosis was the same as my husbands and you e-mailed me once. We are in Colorado,too. My husband was diagnosed 4 1/2years ago and his counts have all been stable at much the same numbers as yours. The only change has been in the platelet count which has dropped from 100 six years back to about 30 now. His last CBC couldn’t even be counted due to "clumping" or some such thing, but he was at 32 last Dec. He has never had another BMB after the initial diagnosis one because he is symptomless. Even with his counts in the low 30’s, he shows no symptoms of any bleeding or bruising (except a dime-size bruise at the blood draw site for a day or two). I don’t know how low he can go before something shows up, but there isn’t much they can do yet anyway, so he just goes along ignoring it all. Are you still as active as you were a few years back? Hope so, keep it up.

[g-masews]

hi, my name is Sherry and I’m the one with the husband 4+ years into this. I originally posted mainly to reassure Cathie that all decisions didn’t have to be made immediately and to give herself some breathing room. I don’t post often anymore as I am very aware that my husband’s case is not the norm, but I "oh, so remember" all our initial feelings and heartaches at the beginning. You asked for people’s reactions, so I’ll give you a brief overview of ours (at least I’ll try and be brief).
My husband got cellulitis in his leg in Dec. of ’04. It was spreading rapidily, not responding to conventional treatment so my husband asked for blood work to be done. That, of course, led to a BMB which was not good and a diagnosis of RCMD with complex chromosomal abnormalities. Our dr. felt the only way to go was a transplant, that his type of MDS would progress quickly and that the cellulitis was the beginning of the end, so to speak. You can imagine our shock (you’ve been there), especially since once the cellulitis was cleared up, he was the picture of health. Our decision to not go the transplant route was based somewhat on statistics, but mainly our particular situation. Our insurance, at the time, contracted all transplants to City of Hope in L.A. and we live in Colorado. He would have had to leave his job and I am self-emp. which meant closing my business, moving away from family and all support systems, and living off retirement savings (he was 54 at the time). He chose not to put us in that kind of financial bind, especially with only a 30% chance of survival or cure. That was our decision based only on our particular situation and I don’t make any recommendation one way or the other to any one else. He chose to moniter his counts every three months and treat supportively if needed. I read, I researched, I prayed, I corresponded on this forum etc. He gave it to God and hasn’t looked back.
His counts remain stable to this day. RBC stay 10. – 11. therefore he has never needed a transfusion (I believe living in Denver, he’s used to no oxygen), WBC 1.0 – 1.5 (absolute neutraphils .5 – .7) but he has not had another infection since diagnosis and the only change is that his platelets are dropping slowly to about 30,000. now. That, they can do nothing about until they hit a dangerous number. So, that is why I say he has had no treatment. We are very aware that is not everyones story and that our turn will come, believe me. Dr.’s say they can’t know more without another BMB but he won’t let anyone touch him and maybe "disturb something". Anyway, that’s where we are at. I check in on the people here and remember you all daily. Thanks

[g-masews]

First off, you will learn. Few of us had any idea of the numbers, terminology etc. until we asked and read and researched. So, you’re on the right track just being on the forum. Always get a copy of everything: labs, counts, biopsies etc. Even if they make no sense now, they will eventually and you need to have the records. You’re age is a good factor for a transplant (under 40 is even better) as many people aren’t diagnosed until much older, however, I would suggest you don’t rush into any decision until you are much better informed. A diagnosis of Imed.1 probably means you have a low blast count and, therefore, have some time to really get to know what you are dealing with. Dr’s. will tell you that transplant is the only cure, which is correct, and many people hear only "cure" and need to also hear risks involved. My husband was diagosed 4 1/2 years ago with Imed.2 and given less than 2 years to live. He is still doing fine with no treatments whatsoever, so it is possible to do much better than the statistics predict. Just take some time to let it settle in and get your bearings.

[g-masews]

Your husbands age makes him such a good candidate for transplant if he can find a matching donor. At his young age, even not a perfect match would still offer good odds. There is a study going on the MDS Foundation newsletter (the home page when you first connect on this site) that is asking for people who have had relatives with MDS in the same family to send in information. It’s such a rarity, they are interested in any info they can get. My husband also has RCMD with 3 or more chromosome abnormalities. He was given less than 2 yrs. to live. That was over 4 years ago and he has never received a single treatment and feels just fine. All odds are in your favor for a transplant, you’re very lucky. That isn’t the case most of the time.

[g-masews]

Unfortunatly, what you have is leukemia (AML is acute myloid leukemia) or very close to it. Between 20-30% is the deciding percentage of blasts. RAEB is refractory anemia with excess blasts and in the process of transforming to leukemia. Your doctor suggested chemo to try to get you into remission. A transplant would require you be under 5% blasts before they would even consider it, and unfortunately, your age is really against you. He may be right in trying Dacogon to simply buy what time you can and to help you feel good for as long as possible and enjoy life. Sorry, this is hard, we all know.

[g-masews]

The first thing is to know what your classification is, what chromosome damage there is, if any, and what blood lines are affected (pancytopenia mean “all” blood lines)as some are probably worse than others. There is no time table for how long you’ll live with Dacogen or not as everyone responds differently. My husband was told 2 years at the most, almost 4 years ago. And he’s never had any treatment of any kind. Basically, how you feel and what you need in the way of supportive care, i.e. transfusions etc. will be what decides the route you go. A mini transplant is probabaly the most you would be able to receive, but the odds are still so poor you may just want to go day by day receiving care if and when you need it. Good luck.

[g-masews]

My husband’s classification was RCMD. He had at least 3 chromosome abnormalities of -20q, +3, and +8. 98% hypercellularity but less than 2% blasts, fortunately. This information came from his BMB in 2004. He hasn’t had another since. I worry that his blasts could be higher now but I would think something would show up in symptoms of some sort, somewhere. He shows no effects. We know from his CBCs that his platelets are dropping slowly over last six years from 100,000 in 2002 to 36,000 presently. That will eventually be a concern, but I don’t think there is yet anything that really helps platelets, is there? His HGB has never been below 10.0 so transfusions aren’t necessary, and although his white count is around 1.5-2.0, he fights infection well and never even catches a cold.
I was just curious about this, because so many seem to receive drug treatments as soon as diagnosis is confirmed.

[g-masews]

When your parents are seeing the doctor, have them get a copy of the pathology report on the BMB. It will be hard to read, very technical of course, but as you learn more about this disease, more and more will be understandable. Also, ALWAYS get a copy of the CBC counts and keep them so you can compare each time one is done. Some people even make grafts or charts to help them watch the counts. All of these things are yours for the asking. Don’t be afaid to ask.

[g-masews]

my husband recently saw a new doctor who recommended his getting the shingles vaccine, also the pnumonia vaccine. Older people are far more susceptible to shingles because of the decline in their immune system. An MDS patient is of even greater susceptibility and even a small outbreak would run amok in their system. Once shingles break out, Acyclovir needs to be administered within 72 hours to be effective. You can only get shingles if you have already had chicken pox.

[g-masews]

The vaccine is given to children or anyone who has never had chickenpox. You can’t get shingles if you haven’t had chickenpox at some time. The shingles virus (herpes zoster) often becomes active again in older people because their immune system slows down, as does anyone with an autoimmune disease. Acyclivir must be given in the first 72 hours of a shingles outbreak to be effective, an it helps hold down the severity of the outbreak. Some have mild cases, more very severe. Herpes simplex is the virus responsible for cold sores. Same family but different strain.

[g-masews]

chuckk333,
We are also in Colorado and I’m familiar with your posts. I’ve been on so many web sites and read so many articles, I couldn’t possibly remember where the particular info came from. I do know I looked up +8 in a Blood Journal article. My husband, also, has 3 cytogenic abnormalities (+8,-20q, +3), and his doctor was absolutely convinced he should have a SCT as soon as possible. His parting phrase to us was,”don’t wait too long, the trisomy 8 won’t stay idle for long”. That was two years ago and my husband hasn’t had a sick day yet. In fact, we’re off to Disneyworld tomorrow with three of our grandchildren. Just giving the little info on +8 that I’ve found so far.

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