[g-masews]

Log on to marrow.org/patient and request the patients guide to choosing a transplant center. They will send you all kinds of information on bone marrow transplants including DVD etc. This book will give you every transplant center in the nation and all their statistics including what diseases they specialize in including those that specialize in childrens transplants. And it’s all free. Of course, the hemo/oncologist and the insurance company will have a big say in where she goes, but it’s extremely good information to have. Children weather transplants much, much better than older people, so take heart and bless you.

[g-masews]

The reason your husband is being told he is not a candidate is probabaly his age. The risks are exceedingly greater with age and until recently, transplants weren’t being done in anyone past mid-fifties. Under 40 is the best candidate. There has been significant strides in this area, however, and especially with what is called reduced intensity conditioning (or Mini Transplant). It involves less chemo and radiation before transplant which is easier on the patient. It has a reduced mortality rate for older patients (over 60) than standard transplants, but the overall failure rate is about the same. The upper age even for a mini transplant is still about 65-70, so that may further limit the possibility for your husband. If I may interject a personal opinion, while a transplant may present the only possible “cure”, it doesn’t necessarily mean restored to good health. Even if successful, there are so many complications that are on-going. Just surviving it, for an older person, is difficult enough, but the patient could spend whatever precious time left recouperating from something that failed. Ask your doctor about mini transplants, but don’t pin your hopes too high. Live with each day as a blessing; none of us are guaranteed more.

[g-masews]

Your name indicates you may be from California. I don’t know which part, but if you are anywhere south, check out City of Hope in Duarte (outside San Diego). If you are north, maybe Hutchinson. City of Hope has an excellent reputation for transplants and, overall, treats patients in the medium catagory (3 on a scale of 1-5). Hutch does more in the range of 2 (1-5). Also, I just received some terrific information from the national marrow donor program, http://www.marrow.org/patient, on transplants after 50 and a DVD, catalog of all the transplant centers in America with their statistics and ratings, and lots of information, if your interested. It was all free, just go to their website. But you should definatly check out either hospital.

[g-masews]

actually Eve is right. There are generally some blasts in the marrow (under 5% is best) but that is where they are suppose to stay. It’s when they escape into the blood stream that they become a problem. And again, not much concern until they go over 5%. Blasts are just immature cells that should die off in the marrow, but if they get into the blood stream, they cause problems. Being diabetic and having heart issues are one set of problems, but a low blast count, and “reasonably” good counts are in your husbands favor as far as MDS is concerned. A wait-and-see approach is still probably best, especially because of his age and other difficulties. Hang in there.

[g-masews]

Your husbands counts don’t seem too bad, aside from the blast count. My husband’s counts run about wbc 1.5 yet he is never sick, Hemoglobin 12.2 but not too tired, and platelets 70, but no problems there. So it kind of depends on how your husband feels as to whether the dr. wants to treat him. When my husband was first diagnosed, I was very annoyed that the dr. didn’t prescribe “something”. Now I’ve come to realize that,as long as he feels fine, no treatment is the best. There will be time for drugs later, I fear. Your husband’s age precludes him from a BMT (except you might ask the dr. about a mini-transplant; they have raised the age limit considerably). But again, if he is doing well, enjoy. The trisomy 8 can be an issue, but there isn’t anything you can do for it. Might ask dr. about Vidaza.

[g-masews]

There seem to be certain karyotypes that mean more than others with this disease. Certainly any abnormality of the 7th is a concern. Also a tripling of the 8th(+8). The -5q alone is a far less serious abnormality, also the -20q if that is the only one. Usually, however, the -20q isn’t the only abnormal karyotype. It most often presents with others as well, though not always. Don’t know much about the 21st, but there can be odd ones that don’t mean much. My husband has a tripling of chromosome 3. But he also has +8 and -20. “Complex” abnomalities usually mean 3 or more. Are those the only two your mother has?

[g-masews]

Thanks for all the input, everyone. I went to a Mannatech presentation and everything they said made so-o-o much sense, but most people I’ve asked,who have tried it, aren’t much impressed. I figured the patients on this forum would know something as everyone seems to know alot about nutrition etc. I appreciate the input. About the MPD, my husbands doctor said at the time of diagnosis, that my husband had the candle burning at both ends (so to speak) because of the MPD and MDS. I noticed the pathology report mentions both, also. But one involved an over-production and the other an under-production, so it was confusing. What you said, Neil, made sense, and Pam, while I don’t recognize a single disorder you named, I will look up the website. thanks.

[g-masews]

I ditto everyone’s reply. My husband’s dr. said not to read too much into the “time frame” prognosis, as it is only a median, and each patient is different based on age, over-all health, and factors of the disease. But he also guessed that my husband was looking at maybe a year without a transplant. That was a year ago, and the man has not even had a headcold since. I catch everything that comes down the pike; of course he is exposed to me, and he gets nothing. He also is on no treatment at all, and hasn’t been. So, he has beaten the odds without treatment and I know there are treatments available when the time comes, as so many of you have proven. So, take heart. Take each day and make it what you would want it to be.

[g-masews]

It is depressing that the cost of drugs is so prohibitive sometimes. At the MDS conference in July, they did a presentation on the cost of developing new drugs like Revlimid etc. Between research, development, clinical trials that involve years and thousands of people, and then applying for FDA approval, drug companies spend Billions (yes, billions) of dollars and then it may not be approved after all. And for patients like us, with a disease that is not only rare but only a few of us even fit the criteria for use, it sometimes becomes cost prohibitive for them to even make the drug. The seminar was a real eye-opener. This is why countries with socialized medicine depend on us to do the research and development, because they can’t afford to and why it is hard to get the drugs in those countries because their governments won’t pay what it costs celgene etc. to make it. It’s a terrible quandary and I wish someone could come up with an answer to the health care issue. I don’t have it.

[g-masews]

To do or not to do…that is the question. My husbands doctor encouraged it greatly because my husband has complex abnormalities (3 or more) and an IPSS of 2, which gave him 6-12 mos. That was a year ago and he hasn’t even had a headcold since then. He does not want a BMT which may make him much worse off even if he survives. He is 55. You are older, Charlie, and might not have many years to wait on that decision, but one thing that should be considered is your chromosonal abnormalities and %of blasts. My husband has no blasts but has the trisomy 8 which can become leukemia quickly. Now his doctor recommends only a mini transplant if he is willing. Right now he is opting for every healthy day to enjoy and who knows which decision is the best? Wish there were easy answers. By the way, his levels are WBC 1.0, Rbc 12.0, Platelets 50-60. Suffers no effects from any of these.When he was first diagnosed, it consumed our every thought and we felt we had to make all these decisions right away. Now, we hardly think of it at all, and I’m glad we didn’t jump into anything too quickly. But you and your doctor and family are the only ones to decide.

[g-masews]

Welcome Kevin, we are in Denver too and the Rocky Mountain Cancer Center is excellent and they have doctors profiles and resumes online. Check those out,some are very experienced with MDS. We are with Kaiser so our only choice for a BMT is City of Hope in California where Kaiser contracts. Because there are things to consider when you go out of state such as cost, family, care-takers, job considerations, insurance, etc. it would benefit you to check on local cancer centers first. You are young and, therefore, BMT might be a very good option for you and, of course, better while healthy than waiting. But that still doesn’t mean you have to make a decision too quickly. We got good advice from someone at the AAMDS conference in Denver in July, when we had only been diagnosed a couple of weeks: Slow down, breathe, get informed, and breathe again. There’s time. Best of Luck.

[g-masews]

Your right about previous infections, which were cellulitis, and those came on within hours with all the fever, chills etc. that accompany that. He has had this for months and no symptoms of infection. Feels fine, just looks very weird. Wondered if it had a name.

[g-masews]

My husband, also, is asymptomatic, but we were given very little info and we are in a large metro area with a mds specialist. I’ve learned everything on-line and from this forum. My husband has multiple abnormalities, low counts and no symptoms so he won’t even get his blood counts done as he doesn’t want to think about it. I guess as long as he feels fine, what else can they do? I wanted some type of treatment just so I could feel we were doing “something” but have since learned that no treatment is a good thing if all is well for the moment. Spend as much time as you can on the internet, and asking questions here. You may have to go elsewhere to find a good doctor, but it sounds like, for now, “wait and see” might be a good option.

[g-masews]

My husband was diagnosed with MDS because he had 2 bouts of celulitis. The first time was in his leg and he thought he pulled a muscle. The same day he bagan having fever, chills, and typical flu-like symptoms. Within a few hours the knee was all red, hot and swollen. I took him to the dr. that afternoon and by then he needed a wheelchair; too painful to walk on. It spread from toes to hip before starting to heal and his treatment was oral antibiotics and an I.V. everyday for a week. Dr. said it is a strep or staff virus that gets into the cellular (third) layer of the skin and is not unusual (although no one we knew of had ever had it). He healed and was fine for 4 mos. and got another bout of it in his arm. He knew immediately what it was when his arm starting “feeling funny”. This time it went from fingertips to upper arm and treatment was same. He then asked dr. to run a blood test to see if there was a blood problem, and, lo and behold, they had him into hemotologist immediately. And here we are. It will come on fast, and feel like the flu. It is generally in extremities or face, and needs immediate care for an MDS patient or can go into sepsis, or so the dr. warned my husband. Some people are more susceptible to it than others. Hope this is not your situation, but have it checked.

[g-masews]

That makes alot of sense. Thanks for the explaination. His score is also a 2. I guess ones personality also has a great deal with how one handles all of this. I’m an information gatherer, discusser, non-procrastinater, whereas he takes care of things between halves of the football game. That’s worked for us for 36 years, until this. I can’t do this thing for him and my greatest lesson in all this will be to learn to let go. Hope I’m not too old to learn.
One further question… what does it mean to have MDS/MPD? Everything I’ve read on myeloproliferation doesn’t tell me how it effects MDS. Dr. says he has that also, so he’s burning the candle at both ends. Notice how the dr. is just full of cliche’s?

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