Just diagnosed with MDS (still young)

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• September 19, 2006 at 10:50 am #15073
  Pamela Ann

  Member

  I have just been diagnosed with MDS and I understand that I am quit young(41) to have this. Can anyone tell me if they know of someone of my age that has it? Can anyone also tell me if a bone marrow transplant is or can be a cure? My Dr adviced me that a parent would be a good donor, but mine are both gone. I have two daughters, 24 and 19.
  If anyone can give me info on this or tell me where I can get it, it would be of great help.
  Thanks and God bless you all.

  September 19, 2006 at 12:16 pm #15074
  Neil

  Member

  Hi Pamela,
  Are you certain of your diagnosis?
  Are you seeing a hematologist experienced in treating MDS? This is very important!!
  Did you have a bome marrow biopsy? Is so what were the results? What were the RBC, HGB, WBC, Platelets. Any abnormal chromosomes? Any blasts?
  A Bone Marrow Transplant or even better a Stem Cell Transplant are possible cures if the work.
  I am amazed your doc told you a parent would be a good donor. It would be the first time it ever happened! Children are rarely donors if ever. Parents and children may be satisfactory organ donors but certainly not bone marrow ar stem cell donors. The best source of a donor is a sibling. The next best (and a long shot) is an unrelated donor found through a bone marrow registery.
  Please go back to the home page for this site. Browse through the educational materials and the rest of the site and glean out the pertinent info.
  But by all means get yourself to a doc that has knowledge of MDS and how to treat MDS.
  Your age is very much in your favor and from the sketchy info you provided you really need a second opinion.
  Do not mean to be so brusque, but between your age and the comments your doc made there are some distinct questions.

  September 19, 2006 at 2:52 pm #15075
  jeff b

  Member

  Pamela,

  First I am 40 and have MDS. I think the only way to diagnose MDS is with a bone marrow biopsy. I agree with Neil that if your are not seeing an oncologist familiar with MDS you should find one.
  I am getting ready for my transplant the first part of October but I have been getting supportive care for a year now.

  Also be cautious in reading information on the web. A lot is outdated and they are constanstly coming up with new treatments.

  Jeff

  September 19, 2006 at 4:20 pm #15076
  frank

  Participant

  pamela,

  i am in the age, i don’t have a matched relative donor, so i cannot do the SCT or BMT.

  Frank

  September 19, 2006 at 5:35 pm #15077
  Marsha

  Member

  Pamela,
  I am almost 2 years out from my BMT; for MDS/MPD subclassified as CMML. I was 50 years old at diagnosis. I did not have a related donor and they didn’t test my mom or my children. This is a very expensive process (to test) and some insurances do not cover the costs. So I think that you need to go to a specialist in MDS like Neil said. I do believe that I was told BMT/SCT are the only cures for this disease but since the time of my diagnosis they have come out with alot of new meds, etc, that help people live long and productive lives without going thru the transplants. I agree do not get alot of your knowledge from the internet, I was told anyone, anywhere can put anything they want on it and it isn’t always up to date or correct. Hope that you can find a good hematologist that will help you understand. And there are many different subclassifications of MDS. One of which it is not cancer (tho treated like it at times) it is a bone marrow failure disease. Wishing you well, Neil was a good source of info for me, he has done alot of research, and is very knowledgeable. Thanks Neil.
  Marsha

  September 19, 2006 at 7:02 pm #15078
  lindajo

  Member

  I aam 45 diagnosed at 29. Initially I was told that I had six months before transforming to AML and a transplant was only hope. Although I have a perfect match in a sibling I decided to follow my insticts and wait and see.

  So far I have only needed infrequent transfusions and antibiotcis.

  Get to a Center of Excellence for MDS. Check out the aplastic.org website for the Aplastic Anemia-MDS foundation. They have great resources also. Lindajo

  September 19, 2006 at 11:22 pm #15079
  Pamela Ann

  Member

  How can I say Thanks to the quick and carring response. I have only had one bone marrow done biopsy and am being scheduled in a week or two for my second. My white blood count is app 2.4. The doctor that I am seeing is a hematologist. I really don’t understand any of this yet, but I hope to educate myself. I have been told that my daughter’s could be a 20% chance of a match. I was also told this by a nurse at ST Margaret’s Hospital in Toronto, Canada. I have 2 sister’s and 4 brother’s, but asking them to help is asking to much. Unfortunately that’s the kind of family I have. Just after my bone marrow biopsy I was in a car accident and injured my back. I am needing surgery, but the hematologist I am seeing is concerned. White blood count is very low and chance’s of an infection could set in. I know absolutely nothing about MDS and would like to educate myself. So if anyone can help it would be wonderful. Neil you seem to have alot of knowledge and I believe that the best education come’s from the people who have it.i would like to tell you all that if there is anything I can do for you, please ask and I will try my best. Even just to talk. Friends can be the best medicine….Neil I will be sure to ask alot of questions from the Dr. There were alot of low levels with my blood test and that is the reason a bone marrow was done. I wasn’t given any number’s except for my white blood count.I was in shock when the doctor gave me the results, so alot of what he said is a big blank to me. Drove home and was afraid to tell my family. We just lost 2 grandparents in a 1 month span. We are trying to heal from our loss. Is ther e any books that I can purchase? All the help would be great. Thanks to you all.

  September 20, 2006 at 1:08 am #15080
  jeff b

  Member

  Pamela,

  I don’t know of a book specific to MDS but if you would like information concerning stem cell transplants the BMT Infonet has a patients guide plus other patient information. AAMDS.org has a free patient organizer you can get.

  Be sure to write down your questions before you go to the doctor and if possible take someone who can help take notes.

  I am sorry to hear that your family might not be too much support. Your brothers or sisters would be a potiental donor. My sister is my donor.

  Take Care,

  Jeff

  September 20, 2006 at 2:02 am #15081
  Russ

  Member

  Pamela, Suggest you ask your doc for a copy of the pathologist’s report on your BMB. Posting that might elicit some response from those of us who have gone through it. Also it would be useful to have to compare with your 2nd test results – compare %blasts in each test, e.g.
  I would also ask for the cytogenetics report where you can find if you have any abnormal chromosones and which ones they are.
  Best wishes

  September 20, 2006 at 2:03 am #15082
  Suzanne

  Member

  Contact the Aplastic Anemia & MDS International Foundation Po Box 613
  Annapolis Md. 21404-0613 USA
  800-747-2820.Or contact them through the internet.
  the packet of informaion they send out on MDS at no cost was about the best over view of the diseases in language that is easy to understand that I found anywhere.

  September 20, 2006 at 2:06 am #15083
  Russ

  Member

  Linda, let us know which vitamins and quantity, please. Might be a help to someone here in MDS cyberspace. Thanks,

  September 20, 2006 at 3:51 pm #15084
  Neil

  Member

  Hi Pamela,
  In the world of MDS a WBC of 2.4 is not all that bad. My doc always checks my absolute neutrophil count. If neuts are reasonable he is satisfied. He doesn’t worry till the ANC gets to 500—with me.
  Would suspect your Red counts and platelets are also involved. Be sure to get your RBC (red blood cell) HGB()hemoglobin), platelet blasts (if any) counts. Also find out if there are any abnormal chromosomes–if any, which.
  It is very important to know which class of MDS you have and your risk level.
  A transplant is a serious matter involving risk—at any age. The older the higher the risk.
  There are a number of questions to ask when considering a transplant.
  How many has the facility done? How many survived beyond 5 years?
  How many has the doc done. How many survived beyond 5 years?
  ON how many 41 year old patients with YOUR MDS Classification have they done a transplant?
  How many of these survived beyond 5 years.
  You always want to be very cautious of any doc who promotes a transplant for the purpose of learning more about MDS and the BMT or SCT process. Experience is mandatory. This is not an area for OJT!
  The University of Toronto Hospital for Sick Children is A Center of Excellence for MDS .Dr Yigal Dror heads up the department. At some point you may wish to add him to your team.
  The books on MDS are pretty stale Progress/research/drugs over the last 2 years have made most of the books obsolete. The language in the books is rather difficult to understand. The medical terminology is difficult and take a long time to develop an understanding.
  If you go bask to the Forum home page and click on the links just below the Forum icon, particularly Patient Information you can find the most up to date info. You can also call the office and have printed materials sent. The body of the home page also has great update info that can fill in a lot of gaps.
  Call the phone number Suzanne gave you, speak to Marilyn Baker and ask any questions you have. Be sure they send their printed material. It is excellent.
  You can also get info from their website:
  http://www.aamds.org
  They hay a news letter that can be mailed or e-mailed. Tons of info in language we can understand.
  Would also suggest going to: http://web2.airmail.net/uthman/blood_cells.html
  This site explains about the function of blood cells, what the significance of the counts in a CBC are. You can print out 30-40 pages of very good material in reasonably understandable language.

  September 20, 2006 at 10:43 pm #15085
  lindajo

  Member

  Russ, I posted my vitamin list August 25,2006.
  I went back to that post and posted a message to you so it would hit the top of the discussion board. Hopefully you will find it. If not let me know. Lindajo

  September 21, 2006 at 2:06 am #15086
  Russ

  Member

  Thanks,Linda. Keep up the fight!

  September 22, 2006 at 5:29 pm #15087
  seekay

  Member

  Dear Pamela,

  As you get your second bone marrow biopsy and other lab tests, I think it is important to consider that trauma, both emotional and physical, can affect the body physiologically. You mentioned a car accident and some recent deaths in the family. I would think it possible that the counts might fluctuate in response to such events, and then change again with the passage of time (with healing and rest).

  Also, if you are interested in exploring a nontoxic way to help heal the body, you might want to research the Gerson Therapy, a whole body nutrition and detoxification therapy developed by Dr. Max Gerson (a German Jewish physician who also practiced in NYC) in the 1930s.

  Dr. Gerson believed that nutritional deficiency and toxicity of the body was at the root of chronic degenerative diseases (like cancer, autoimmune disease, heart disease, diabetes).

  He is, I feel, the unacknowledged “father” of many of the dietary recommendations now advocated by organizations like the American Heart Association and the American Cancer Society, as preventive for chronic degenerative disease.

  His is a highly detailed program that requires one to “eat” the equivalent of 20 lbs. of produce a day, mostly in the form of raw juices which are freshly prepared and therefore easily digested (with minimum effort required from the digestive system, thus freeing up the body’s resources to focus on healing). Dr. Gerson found that people with cancer and other chronic diseases had compromised digestive systems that benefitted greatly from being able to absorb nutrients this way, with the least amount of effort.

  Nutrition in these quantities is akin to prescription medicine, in the effect it can have on the body.

  Also, one must refrain from certain foods (salt and sodium, no animal proteins the first 6 weeks, most oils and fats) and avoid exposure to chemicals (including chlorinated and fluoridated water).

  If you google him, you will find a lot of conflicting information about him (many detractors and people who tried to put a cloud on his name). I would urge you to read with a critical mind and to think about the big picture and your own health history. The best thing I like about his approach is that it is nontoxic–no chemo drugs involved.

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