new member again

[g-masews]

Okay, I finally got it. My husband is a patient with MDS, dx May ’05 (had it much longer, I believe)with RCMD and complex abnormalities (not the -5q). He is however symptom-free and it was discovered only because he asked for a CBC after a bout of celulitis. Upon getting the results of low counts in all lineges, dr. sent him to hemo. specialist in MDS. He seems to be a good dr. but is suggesting no treatment whatsoever, which I guess could be a good thing, and is pushing only for a SCT which my husband is loath to even discuss. His brother is willing to be tested which I have insisted on. The transplant would have to be done at City of Hope in California and we would have to live there at least 4 months, essentially leaving both of our jobs. Dr. insists it is better to have it done while well, before developing to AML or other complications, which makes perfect sense to me, but husband (age 55)feels he needs to work as long as possible since there probably won’t be a job to return to after recovery period, even if transplant is successful. And he also sees only the statistics on mortality, complications, and relapse rates. It’s frustrating to me. I know this is an issue many of you have had to grapple with and there are no easy answers. I also know this disease is going to get a lot uglier. Even some of you who are in a “wait and see” mode are on some type of treatment or medicine. I keep wondering if my husband shouldn’t be doing something pro-active. Any views?

[lindajo]

You should let your husband choose. I have a perfect match in one of my sisters. I received the same advice to wait and see. To date I have only had infrequent transfusions. A total of 16 units over 15 years. I initially was told that I would require transfusions every 3-4 weeks and that I had 6 months to a year to live.

I am grateful I was given the option to wait and see. Right now I only take antibiotics as needed for frequent infections. Blood counts every 3-4 weeks and pain medication. I believe my good luck is due to major diet changes and nutritional supplements.

I am on disability mainly because of side effects of a severe infection in the beginning and extreme fatigue.

Great strides are being made in research and they might find something less dangerous than a transplant, or better means of transplanting. There is a misconception that a cure through transplant means good health returns. For many it just means disability from the side effects of transplant. Right now most Centers of Excellence won’t do a transplant unless the patient has no other options.

Since your husband is symptom free now. Follow his insticts. Let him work as long as he can. You never know he could make it to retirement age.

[eve]

the only advice i can give you is that everyone with this disease is different in their progression and response to treatments

what works for one might not necessarily work for another

where one person’s disease might progress very slowly giving them many years where no treatment is needed another person’s disease could progress very quickly – and turn into AML

if your husbands hemodoc specializes in mds, and he has faith in his experience and knowledge, why not let him lead the way

good luck

eve

[stacyl]

your husband’s age is definitely something to consider. right now, he’s still at an age where a full transplant is an option. plus, there are many doctors who “write you off” after 60. does your husband have disability insurance? if not now, it may be helpful someday.

in my dad’s case, he had no symptoms either. mistakenly found out his numbers were off when he needed gall bladder surgery in march 2004. he was fine with no symptoms up until august 2005. it seemed like he fell off a steep cliff the way he declined so fast. so quickly that one week we walked all over disneyworld together (he carried my 3 year old) and the next week, he was too weak to walk the dog. in september, he basically stopped working (he tries to work from home, if he’s lucky he gets a few hours in via phone, but is exhausted after)and he’s getting 2 or 3 tx’s a week. my point – it was really FAST and we weren’t prepared.

it would be wonderful for your husband to be symptom-free for such a long time… but, just keep it in mind when you’re making your decision. Good Luck and many healthy wishes for you both!

[g-masews]

I think my fear is that things will change very quickly, as you say. The dr. said he is a timebomb waiting to go off. The trisomy 8, which is one of the abnormalities, won’t stay idle for long is his phrase. But I also read all the posts from so many of you that have long outlived your pronosis’. Lindajo, yours is one that I’ve noticed, as your dx was so long ago. If you don’t mind my asking, how do you get an IPSS of 2 with no abnormal chromosomes? My husband’s score is also about a 2 and the prognosis I keep reading is really scary. I try to throw all that out of my head, as so many of you have said to do. And yes, we do have full disability insurance, and excellent coverage all round. Thank God for that.

[Neil]

His DX of Trisomy 8 is the issue the doc is concerned with.
There are too many variations with MDS to be able to compare his situation with others. Not that many with Trisomy 8 to compare to.
If his counts start to decline he can expect to have other health issues that are created as a result of the MDS.
Would get very close to his doc and glean every bit of information you can.
IF they can keep his counts from declining it may be another matter. That is a big IF.
Keep gathering info to provide a basis for a decision on which way to go.
You might wish to put his counts on a chart/graph so you can see if there are any trends.
I have had MDS (RCMD) for 8 1/2 years. Counts have been trending down about every 6 months. Now on Procrit and red cells are doing well.
Has his doc suggested any drugs that might boost his counts?

[g-masews]

My husband hasn’t had a blood count since July although he is suppose to get it done every 4-6 wks. He says he doesn’t want to know. But I’ve learned (mostly from reading this forum) that things can be going on without his having symptoms and I’ve finally gotten him to understand that. He had very low blasts at his BMB, but I know that can change, also, in a hurry. His best line is red cells so he is not tx dep. at this time and fatigue is not an issue (course we live in Denver, so we’re used to not breathing much oxygen -ha!) His white count is his lowest but he’s never been too prone to colds or flus and he tends to scratches, cuts, etc. right away. Dr. hasn’t suggested anything at all, but might if he saw the counts changing much, which is why I’m trying to push him to get his BCB’s done regularly. I know he’s into this a short time and doesn’t want to dwell on it, so my main purpose here is to air my concerns on you guys rather than take my frustration out on him. Hope you don’t mind. Thanks

[Neil]

His primary issue at this point seems to be his blast level. They should be considering how they are going to lower his blasts and how to make certain they do not get into his peripheral blood!!
Cbcs can be annoying. At one point my doc wanted them weekly. The trip to his office was very time consuming. I found a lab at a clinic 8 minutes from home. They drew my sample, ran the CBC and faxed the results to my doc. A lot more convenient an less costly.
His risk might be taht he feels ok—now— but what about months or years from now. Best to be pro active now, before his MDS worsens— and it will without some sort of treatment. He also wants to keep his counts as high as possible to prevent problems with fatigue that eventually has heart implication, with infections such as pneumonia, endless colds. with bleeding iissues that can crop up with low platelets.
Better to act now rather than react later when options are reduced.
I HAD a friend who chose to ignore his MDS.

[diner]

It sounds like your husband is not easy to get to the doctor and is in denial about his problem which makes it extra hard on you. I know my husband had to deal with me not wanting to do things either because I didn’t want to admit I could now have MDS. Lots of luck to you.

[lindajo]

I was asked how I have a IPSS score of 2 when my chromosones are normal. The IPSS score are based on 3 things. Bone Marrow Blasts, Karotype(chromosonal abnormalities) and Cytopenias(deficiencies of the blood).

I have 3 cytopenias, deficiencies in the white, red and platelets. That gives me a score of 0.5 My blasts range from <5% to sometimes>11% which gives me 0.5 to 1.5. It seems to change everytime they do a marrow. They take the highest of 1.5 and add it to the 0.5 to get 2. I was scored last July.

My original blasts were more than 75% and I was initially classed as erythremic myelosis, now called AML M6. The WHO( world health organization -not the band) changed the name of that disease in 2002.

I realize that going from AML M6 back to a better diagnosis of RCMD or sometimes even RA seems strange, but I have seen 16 specialists over the years. All of them have been experienced in luekemia and MDS and they don’t get it either. One was the president of the leukemia society and one wrote a textbook for hematologists on erythremic myelosis also called DiGuglielmo’s syndrome, the original name for AML M6.

I think the reason I have improved, instead of dying, is that I completely changed my diet, I was fortunate to have great disability insurance, so I haven’t worked outside the home, I started on tons of vitamin supplements and I had a number of people praying for me. It wasn’t simply luck, a lot of it was hard work.

When I was initially diagnosed many specialists wouldn’t assign MDS unless there were abnormal chromosones. I haven’t figured out what year that changed. But now there are many who are diagnosed MDS who have normal chromosones.

My point is that sometimes you just have to follow the patients instincts on what to do. So many times I see family members that want to jump in and make the decision for the patient. The disease controls enough of our lives, we the patients, need to have the final say in treatment options. It is so hard when you want to help not to take over. Sometimes I do it with others when I want so badly to be helpful.

Be sure that the patient has the final say. That is the greatest gift you can give them.

[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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