[lindajo]

Thanks for the tip, I am debating a port too. It gives me something else to try.

[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.

[lindajo]

At convention last year every doctor recommended an exercise plan and a nutritionist. They just didn’t want the liability of recommendations since it wasn’t theire area of expertise.

I use water aquasize since it keeps any of my muscles from taking impact and limited weights on machines at the local YMCA. During cold and flu season I do yoga exercises at home to avoid and limit exposure to sick people.

[lindajo]

Hurrah, You got it to work. Keep trying, I had the same problem in the beginning.

[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.

[lindajo]

Right now there isn’t a way to donate it because of the costs of collecting, preserving, storing,etc. That is what this legislation would cover. Otherwise you would have to pay to have it collected and stored by one of the private cord banks that is currently available.

[lindajo]

Sandy, If you have a sibling match or a perfect HLA match from a donor in the registry I think they still recommend a BMT.

For anyone else, regardless of age SCT and CBT are their only options. In other countries they are having good luck with CBT. There is currently legislation that has passed the house and is now in the senate that would provide government funding to establish a Cord Blood Registry.

It was featured on Nightline with Ted Koppel earlier in the week. Go to http://www.abcnews.com and look for the story. This might be one way of starting massive research without the controversy of embryos. It would provide funding to store the 3.5 million umbilical cords that are thrown away each year and to do research on the stems cells in the cord.

No one has done enough research yet to say whether or not it is a better alternative to embryonic stem cells. It seems like it is worth supporting though. Call your Senator and express your opinion.

[lindajo]

Jerry, I think you are looking for someone to tell you that they can cure you now. That is currently only available with a transplant. My understanding is that even if the transplant cures this disease, that procedure has risks of it’s own.

The high doses of radiation and chemo can leave you just as disabled as you are now, but from complications of transplant and not MDS. You will probably hear the same thing no matter what Center of Excellence you go to. I don’t think that one center is considered to be the best… The one who recently got more research dollars was the Cleveland Clinic.

Your best option might be to wait and see. The doctors at Fred Hutchinson and M.D. Anderson are among the best in the world for this disease.

Your quality of life might be improved through nutrition, exercise and massage. I know nutritional supplements and diet changes lengthened the time between transfusions for me. I went 5 years between transfusions. I still had the MDS but it was manageable. Consult a nutritionist and work at finding exercises that you can do. I do yoga, aquasize and lift weights.
Whenever I don’t, I can really tell. Good Luck.

[lindajo]

Sandy, That much fatigue can go with MDS and may not be due to Vidaza. His rapidly falling counts may be an infection knocking down the cells. Since he just had a root canal that may be the case. Be sure and ask the hemo. Also check his temperature several times a day. a low grade fever or one that spikes is how I can tell if I have an infection.

Many who are transufion dependent get tx’s every 10 days to 2 weeks. There may not be any internal bleeding.

I can’t answer your questions about Vidaza but others on this site have said that initially blood counts may drop before they level off and improve. Keep a close eye on him. Be annoying with the doctor tomorrow if you have to.

[lindajo]

Stephen, When you read those statistics they are based on the fact that until the past 5-10 years only older men were diagnosed with the disease.

I was one of the rare younger women diagnosed. In 1991 I was only 30 when I was handed the same statistics. In January will be my 15th year. It will take years for the stats to catch up with reality. Now that doctors are better at recognizing the disease more and more younger people will be diagnosed. As we live longer than patients who start at 70 the stats will improve. Right now I consider the stats to be worthless.

RA is one of the most survivable forms. Make sure that you learn to read your bone marrow results and CBC’s (complete blood counts. This site is a good place to start and the forum is invaulable. Also clink on links from the forums home page and register with the aplastic-anemia myelodysplastic foundation. It is a separate organization. They are at http://www.aplastic.org .Call them and ask for their patient information packet. It is one of the easiest sources to read. To understand the disease on their site is a webinar mini film. It is a presentation by Dr. Mikkael Sekeres of the Cleveland Clinic that he gave to patients at the AA-MDS convention in MD last year. Go to I believe Events on their website and clink on it. That should bring up webinars.
You can watch his presentation over and over until this disease makes sense.

There are also great sources for reading your CBC’s. I found one of the best through this site. I have to go to another file to get the web address for it so I’ll post it later.

Get a nutritionist referral and also keep fit by working out. I use yoga and aquasize to help with muscle soreness and bone pain. When I am feeling better I work out using weight machines at the YMCA. Use the lowest weight and work with more repetions. It keeps the muscles from being overworked with higher weights.

Your physician gave you good advise though about writing a will and keeping it up to date. Every adult should have one. Especially those who live near the coastal areas lately. MDS doesn’t make it more necessary. You needed one anyway.

We will all be here to support you. First you need to spend some time learning as much of the MDS lingo or language that you can. Stay positive. Lindajo

[lindajo]

Caroline, I hadn’t looked at the MDS website for awhile. They have some neat new things. Once you get there go to About us clink on that link. Then click on how we can help and that page tells you how to order their informational packet.

It also has a Webinar presentation. You will find it under Events link. That is a movie type format that will download to your computer to explain MDS. The presentation that was given by Dr. Mikkael Skeres of the Cleveland Clinic, A MDS Center of Excellence(COE), at the MDS convention in Maryland in July 2004 is there. It will help a great deal in your understanding of the disease. Good Luck Lindajo

[lindajo]

Caroline, I don’t know what information your doctor in Canada is required to give you.In the states they have to give the patient copies of anything we request in writing.

Ask for a copy of all tests. That way as you learn more of the disease language, you can look back and see where your Dad’s counts were and where they are now. Especially learn to read the Complete Blood Count report (CBC) and the bone marrow biopsy report.

Go to the bottom of the page and click on the MDS Website tab. Go to the home page and click on links. There you will find the website for the Aplastic Anemia -Myelodysplastic Foundation. There site is http://www.aplastic.org Order their information packet. They will accept any donation that you want to give. I don’t know if they charge for packets sent outside the U.S. Their information is the easiest to read for non-medical personnel.

It will take a little while for you to learn what the doctors are talking about but we will be here to clarify what we can.

[lindajo]

Azra was at Rush Presbyterian in Chicago. She has headed up many trials for MDS. My doctor has consulted with her and I think that she gave a talk on MDS to the hematologist/oncologist convention he went to.

My understanding is that she is well respected.

[lindajo]

Fran, Being a senior has nothing to do with it, this disease is a new language. Don’t worry if it doesn’t make sense right now.

Get a copy of all previous blood work before going to the new oncologist. Go out to a link for the aplastic anemia-mds foundation. It is http://www.aplastic.org and ask for a patient information packet. You can go to the bottom of this page click on MDS Website it will take you to the home page of this organization and then click on links and the aplastic anemia-mds foundation has a link there. Their information packet is the easiest for lay persons to read. Order it and read it. The packet is free but any donation you want to make is always accepted.

It will explain the different categories of the disease. RAEB means refractory with excess blasts. It looks like they have already determined that your husband has one abnormal chromosone. That helps the oncologist to determine what treatement may be best for the patient.

Why weren’t you going to Mayo. If your HMO doesn’t cover it ask why and appeal the decision. Your HMO has to generally explain why. It may be that you need the second opinion first and then they will approve Mayo. If you don’t understand why your state insurance department probably has a toll-free number and they can give you guidance. Also look into your state departments for senior assistance. They can also give you help with all of your coverage questions.

Even with a hematologist/oncologist that is experience in MDS they may wait a month to repeat blood counts. Be sure to call your current doctor or GP if your husband symptoms change.
Watch heart rate/ blood pressure and watch for any temperature over 101.1 in the meantime. Good Luck we are here for you.

[lindajo]

At 85 supportive care, stills means transfusions and antibiotics as needed, plus pain medication. A nutritionist is extremely helpful for diet changes and a supplements can be recommended by a homopathic or naturalist. These can also help with the skin condition and his overall feeling of well being.

Whatever you decide to do, make sure that you listen to what your Dad wants. So many times the family listens to all the experts, other patients and they forget to ask the patient what he/she may want. Put your Dad’s wishes first.

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