[g-masews]

The trisomy 8 chromosome change is one of the common abnormalities associated with MDS. Unfortunatly, those with that abnormality are more likely to transform to AML. The 5q deletion, alone, is a less risky chromosomal abnormality (aside from none, which is obviously best)also the 20q deletion, alone. Three or more abnormalities are considered high risk. The ones considered the greatest risk for AML are the trisomy 8 and the monosomy 7.

[g-masews]

These statistics you refer to are, remember, the “median” survival rate. Half less and half more. It could be much longer for your father, especially if he is low risk and only red cells affected at this point. The RCMD diagnosis comes from the pathologist, usually, and you can get a copy of that report from the dr. It will be hard to understand, but you’ll get better at reading them with research (such things as BloodJournal).It means refractory anemia with multilinage dysplasia and they may have put him in that catagory simply because they use the WHO prognostic system. Under the FAB system, he would probably be considered RA (refractory anemia, which only means ‘not responsive to treatment’). His blast count and chromosomal changes are of greater significance than the catagory and if he is low risk, those are probably okay. Breathe deep and don’t make yourself crazy here, okay?

[g-masews]

He not only doesn’t do alternative anything, he doesn’t eat the healthy’ist’ either. Before all this came along, he started eating better, dumping junk food and excercising more. After diagnosis, he figured he was gonna die anyway and went back to all his old habits. Now, he doesn’t think that way anymore (thank goodness), but the old habits are still pretty much a way of life. Don’t use him as an example to follow. I just wanted you to know that there isn’t a set pattern for this disease. It progresses or not in it’s own way and time. But we would all benefit from a healthier way of living, I would bet. Good luck.

[g-masews]

Choijk, I thought I’d post here to let you know our specific situation. I found this forum while I was desperately searching every avenue for information after my husbands dx more than two years ago, He also has RCMD, all lines are low, although his red cells are the best. He has complex abnormalities and is considered INT 2, but the dr. said he’d put him in the high risk catagory as his marrow is 99% hypercellular and has mpd/mds. He pushed very hard for my husband to do a SCT as he was 54 at the time. We opted not to. The dr. didn’t elect to put him on any kind of treatment, but felt he had about 12-18 mos. statistically speaking. My husbands counts haven’t changed in two years, he has not had any symptoms of the disease, gets sick less than most normal, healthy people, and we rarely even give this disease much thought anymore. Now, that is not the case with many people on this forum and one can never know what the future holds. I only write this to say that it doesn’t always move along quickly or in any set formula. I hope that two years from now I can still be writing the same things about my husband, but maybe not, which is why I read these posts all the time to be prepared. Learn all you can, but leave it in the hands of the One who controls it all anyway.

[g-masews]

Luckily you are not too far from City of Hope. They have housing right on their campus for the transplant patients and a good website to answer many other questions, but they will also give you all that information prior to admittance. Best of Luck to you.

[g-masews]

For many people with MDS, skin infections are a factor, particularly cellulitis. My husband had his first case two Christmas’ ago, from his toes to his hip. Drs. thought it was just a fluke thing since they could find no primary site of infection (altho it can be the size of a pin poke). Four months later he got it again in his arm; again no primary infection. It was at that time they did some blood work, discovered pancytopenia, did BMB and diagnosed MDS. We realized he had probably had MDS for several years and they thought the cellulitis was the first sign of the disease beginning it’s decline. The infection did clear up without hospitalization, just some strong antibiotics, and he has never had another single symptom of this disease. He got a new dr. last month, and when he pulled up his blood test results from the past three years (even before we knew he had MDS) he saw that during that four month spell in which he got cellulitis twice, his neutraphils had dropped to .2 while they have been in the 1.0 range the rest of the time. Neutraphils are the first line of defense in fighting infection, often skin infections as I said, and Drs. watch for that in the blood tests the patient has regularly. They can give shots of Nuprogen (I think) to help bring that up when it drops. That’s all I know regarding cellulitis, but my husband’s toes have been black for several years, even before this disease. Drs. just shrug their shoulders and ignore it if it doesn’t bother him, which it doesn’t.

[g-masews]

go to this web page http://www.aamds.org and sign up to get all their information on both aa and mds. It’s all free and they have a wealth of info all easy to understand. Any new patient should do this.

[g-masews]

Hold on, don’t start selling anything yet. Your doctor is right, things aren’t horrible (in spite of what you might read). From what you wrote, the WBC is a little low which only means that if she gets an infection in her system, watch it closely. Wash hands often, avoid sick people, treat cuts and open wounds immediately, that’s all. Other counts are’t bad, it appears. Normal chromosomes – Great! She can go a long time with no apparent problems, just have her blood counts monitered as often as dr. suggests. You don’t need to have her sister tested at this point (other than for peace of mind) as it won’t take long to do if and when the time comes. Searching for a donor is expensive and won’t be done until you are ready to commit to the transplant. The transplant can possibly be a cure (if all goes well) but it can be very risky and pose a great many other problems. It is also very, very expensive (could go upward of a half million with complications)especially without good insurance coverage. She could be giving up a lot of good years with minimal problems for major ones if she does it now. Also, she sounds to me, from the little you wrote, that she maybe a candidate for a mini-transplant. Those are getting better all the time and are being done on patients up to mid-60’s or older. And the technology gets better all the time, so waiting can’t hurt, if your dr. agrees. When my husband was first diagnosed, I was so frustrated that no one was putting him on any kind of medicine, until I realized that was a good thing. The longer he goes without needing anything, the better he is. Treatments are there is he needs them, grateful if he doesn’t. Throw out anything you read on prognosis timeframes, most don’t apply anymore; keep up with this forum (you’ll learn more here than anywhere), and don’t sell the household yet!!

[g-masews]

Just one more point regarding starting the search for a transplant. Our doctor said the search would be done by the transplant team and not until we were ready to commit to it. I know it’s expensive and if they find a donor right away, you can’t just say, “not now, later”, as that donor might not be available later. On the other hand, a match might not be found for quite some time; time you might not have. Hate to throw that quandry into the mix, but it’s another consideration to add to the list.

[g-masews]

This is, of course, the million dollar question and no one can answer it for you. When my husband was diagnosed 18 mos. ago, his doctor believed he didn’t have long to even consider the options. The pathology report, and all the medical journals I’ve read, certainly didn’t give my husband much of chance without a transplant and the hemo dr. believed his transformation to leukemia would not be far off. My husband read and looked at all the statistics, and for him (and this was entirely his choice), he did not want to spend whatever time he had left possibly recovering from something that didn’t work, or die going through it, or maybe have a successful transplant, but deal with other health issues as a result. We have eight young grandbabies and he wanted to have as much time as possible with them. That doesn’t mean that down the road he won’t change his mind and I know he gets older all the time (He’s 56) but, he has not had one symptom or a single treatment since the day we were given the news a year and a half ago. No one would ever guess in a million years that he had any disease at all. His doctor, whom he hasn’t seen in almost a year would never have believed it. I only post this because, had he done the transplant, he might not be here today or able to enjoy the two new grandbabies we’ve had in the past year. Maybe if it comes down to the wire, the possibility of a transplant will still be there, but right now, he knows he made the right decision for him.

[g-masews]

Your counts are almost identical to my husbands, only his HGB ranges around 11 -12. His diagnosis is the same, and also no blasts. He was dx a year ago May. His dr. pushed hard for a transplant, we opted against it at this time. Oh yes, he has at least 3 chromosonal abnormalities (which is considered complex, with the most adverse prognosis), one of which is a -20, and also +8. He never has a sick day, and lives his life with his normal routine every day. We scuba dive regularly, travel, and enjoy our 8 grandkids. He receives no treatment at all and usually doesn’t bother getting his blood counts done but every 5-6 mos. Because of his low white counts, he washes his hands frequently and sees a dr. if he should show any sign of an infection, but that’s it. We both know, this will not go on forever as it is, but we give it very little thought. By the way, he’s 55 yrs. old, so at 78, I say “go…enjoy…do whatever you want and deal with each thing only when you have to. Your dr. sounds smart.

[g-masews]

jerry, thank you for Lola’s name, I would not have remembered it. Wasn’t there also a Bill and Mary going through a transplant last June when he died suddenly of GVHD? I see in the archives that he was beginning the process last June, but can’t find the follow-up. I only bring these two names up because they were on the forum at the time I first found you all and we were having to make our decision at that time, so they kind of stuck in my mind. Can I ask another question (two, actually)? What kind of symptoms does one have if the blasts are increasing or a person is going into leukemia? I know they can only know the percentage of blasts by doing a BMB, but are there also blasts in the peripheral blood? I hear people say it can turn to leukemia in a matter of weeks, but how can you know if you don’t have biopsies that often, and how often does the average patient get one done? I guess I should have made this a new thread, but thanks.

[g-masews]

I’ve tried to read all I can find on chromosomes and how they relate to a transplant. Nothing suggests that more abnormalities or which abnormalities affect the outcome of the transplant (probably because they are ridding the body of the defective chromosomes, or something like that)but I certainly think the number of abnormalities, and which ones, would factor a great deal into the decision process. The severity of the MDS goes up with the number of abnormalities and certain ones, the 7th and a tripling of the 8th, for instance, generally mean a greater chance of going into leukemia and a more adverse prognosis. I haven’t read of anyone who just has the -5q abnormality seeking out a transplant too soon (and I could be wrong) as their prognosis is somewhat better than someone with complex abnormalities. Even with the trisomy 8 and several other abnormalities, my husband still isn’t ready to go the transplant route. It’s all a dice throw, I guess. Since being diagnosed and finding this forum last May, there have only been two patients that I’ve noticed going through the SCT and neither of them made it, unfortunatly. Only time will be the ultimate decider of what we do.

[g-masews]

Isn’t this an interesting discussion. Your reasoning are all the things I said to my husband when he was making his decision. I think the thing that scared him the most was the statistics we were given from the doctor and what research we read was; a 40% chance of mortality, a 40% chance of cure, and a 50% chance of relapse in 3-5 yrs., 70% in 7 yrs. He didn’t like those odds. Funny, how different doctors give different opinions…and these odds are from a doctor pushing for the transplant! If we had heard odds as good as yours, he might make a different decision. One other factor in our choice, while having great insurance and disability, we would have to go to California for a minimum of 4 mos. and both of us leave our jobs. Ouch. Good luck with your search.

[g-masews]

I’m wondering if I should even post my thoughts on this subject, as my husbands situation is entirely different than your mothers, but here was our situation. My husband was diagnosed one year ago with MDS/MPD, multiple chomosome abnormalities, 98% hypercellularity, and an IPSS of 2. The pathology report sounded horrible and the prognosis was “adverse” with approximately 12 mos. to live. The doctor said there was literaly nothing to do but an SCT. His blast count was low, but they said “the trisomy 8 chromosome would not stay idle for long” and they pushed hard for him to make that decision. He read up about it, learned the statistics, and decided against it. His reasoning was that he didn’t want to spend whatever time he had left (and he was only 54)recovering from something that might not work, or leave him further problems even if successful, or outright kill him just from the procedure. One year later, he has not had one sick day since his diagnosis, or one treatment of any kind. Had he chosen the SCT, his life this last year would have been very different, so he made the right decision for him at this time. Having said that, one day this illness will catch up with him and I know that he may well decide, in the end, to go that route. Only he will be able to decide that when the time comes. Your mother may be at the point of having to make that decision now. I know that mini-transplants have a lesser mortality rate due to the reduced-intensity of conditioning, but the success rate and complication rate is about the same. Sometimes a person feels they must fight for life in every possible way, and sometimes a person will choose to spend whatever time feeling as good as possible for as long as possible. There are no easy answers.

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