Newly diagnosed

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• January 2, 2005 at 2:45 am #2566
  JIm W

  Member

  Rec’d a call today from my 68 year old mother in AZ and she told me she was diagnosed with MDS -“Bone Marrow Failure” was all she said. I did some net digging, called her back and tried to get more clarity from her, i.e., type, and it is RAEB-t. It is New Years Day and she is starting Vidaza on Monday. I was quickly able to get a hold of her physician who told me it was “quite serious”, and “will likely transform into Leukemia.” I wasn’t quite sure what to ask, but my Mom is not healthy in general (COPD, on oxygen full time…), so when I asked about prognosis and care (she’s all alone in AZ), he said she will likely die from this, and the real risk is Pneumonia. I am in shock right now and after spending the last 6 hours searching and reading, am not feeling good about this. I’m planning a trip to AZ in three weeks when I will plan to get with the doc and my mom and get deep into this… In the meantime, can anybody give me the right questions to ask, places to search, any supportive advice. My bother and sister and Aunt (my Mom’s sis) are all looking to me… Any thoughts or insight are appreciated.

  January 2, 2005 at 4:00 am #2567
  eve

  Member

  hi jim

  sorry you had to start your new year on such a bad note

  first and most important is to make sure your mother is being treated by a doctor with experience in treating mds patients – at a center of excellence – names of those centers can be found on this web site

  my dad and several members of this forum have been on vidaza – success varies – as do the side effects, but usually they are much milder than other forms of chemo

  one of our members – neil – will probably e-mail you a list of questions to ask

  in the meantime read all you can, but don’t get too depressed by what you read, all cases of this disease are different & just because the doctor says she will probable die from this he didn’t say when – so here’s hoping that that is 30 years from now

  good luck

  eve

  January 2, 2005 at 6:28 pm #2568
  sarah

  Member

  Hi Jim,
  Welcome to the forum. Sorry to hear of your moms MDS. Its good that you are planning to visit and meet with her Drs. Educate yourself on her classification. Neil has a wonderful list of questions I am sure he will email you. As eve said this disease is so very different for each person. My husband, who is now 52 was told Dec 2001 he had MDS RAEB, and had 6 months to live without getting a Bone Marrow transplant. No match has been found as of yet, and he is maintaining well, after 3 years. Keep us updated when you know more.
  Sarah

  January 2, 2005 at 8:19 pm #2569
  Terri

  Member

  Jim sorry to hear about your Mom, Neil on the Forum I am sure will respond with a lot of questions for you to ask the doctor. My husband Bob is RAEB -t and is on Vidaza. We tried it the first time Last year around Nov and he did six rounds and his counts came back stabalized, Could never get the plts normal but everything else hung on well. After seven months the blast started rising in the Marrow and so did his WBC he is now back on the Vidaza and counts are holding. If you look at my other post you will see that we have been using a Nutritionist for over a year now who has added Vitamins and SUpplements to boost the immune system etc and it is helping. By the way Bob will be turning 60 this year

  Your mom will be in our prayers.

  January 2, 2005 at 10:03 pm #2570
  shirlsgirl

  Member

  Jim,
  Sorry about your mom…certainly not a nice way to start off the new year. I’m sure she finds comfort that you will be seeing her soon. This is a fabulous forum….you’ll find valuable information on treatments etc..and support from terrific people. Jody

  January 2, 2005 at 11:42 pm #2571
  Suzanne

  Member

  Jim, I too have/had RAEB-t which transformed into AML. I did not have other problems and the heavy Chemo put me into remission(for a year Now). It has been over 2 years since they gave me a High risk prognosis (6-12 months to live.) and I am feeling well and living alone. I am now on low dose Zarnestra to try to prevent relapse and I understand from my trial nurse that that drug in a higher dose is on the way to being approved as chemo for older Patients like your Mom that might not be able to tolerate the heavy chemo. I have been under the care of an MDS center of excellence and Doctors that specialize and do reasearch in MDS and Leukemia from the time I went there 2 years ago for a consultation. There are some centers in Pennsylvania and you are also not too far from Johns Hopkins in Baltimore where I am treated.Don’t give up and go supportive care until you have investigated the possible alternatives.I sure am glad I didn’t. Suzanne

  January 3, 2005 at 12:38 am #2572
  JIm W

  Member

  Suzanne, Thanks for the thought. This whole thing is overwhelming. Everything I have read about the various treatments is scary to me and I am a healthy mid-40’s. My mom is stoic, but not a fighter, and she is already feeling like anything uncomfortable from the treatment will not be anything she will stay with. The Vidaza does not sound too severe in terms of side effects, but I fear that the slightest discomfort to my mom will result in her bailing on that. Forget BMT and/or heavy chemo. She will NEVER go for that. She has seen 2 very close friends recently pass from cancer despite all the aggressive efforts–to no avail. All she will want is a peaceful passing. I will have to stay with her and encourage her through this whole thing… The amount of time I have spent searching and reading the last 24 hours is not encouraging as I read some of the situations that are playing out. But If I give up, she will too. I plan on staying close to this sight and continue to looking to all of you for advice and wisdom.

  January 3, 2005 at 12:38 am #2573
  czaring

  Member

  I will add how sorry I am to hear about your news. It was mid-November for me when my 69 year old (otherwise pretty healthy) mother called me and said “I have something called myelodysplasia”. I did like you and read on-line what I could until I’d reduced myself to a quivering, nauseated, teary eyed mess!! I hate for anybody to have to feel that way!

  There is a “Center of Excellence” in Tucson, AZ – in case you haven’t yet discovered that. How far is your mother from Tucson?

  January 3, 2005 at 12:41 am #2574
  czaring

  Member

  PS – I’m no expert – but am pretty certain that at our mother’s ages …. they are not considered eligible for BMT. In a way – it’s a relief to know that it wasn’t even an option – for me, anyway. I, too, am in my mid-forties. We have a few things in common at this point.

  January 3, 2005 at 1:31 am #2575
  Kirby

  Member

  Jim, the Univ of Arizona Cancer Clinic at Tucson,
  Az is very good on MDS. Dr. List (MDS researcher) was there for years and now Dr. Mahadavan is in charge. It would be a good plaace for a second opinion on treatmetn.
  I was there last March for possible treatment for MDS RAEB-t, I was judged too close to Leukemia to participate.
  Since then I have had a very good response to Thalidomide, Procrit and Neupogen as needed. My blasts went from 15% to 2% in 5 months.
  Everyone responds differently, your Mom might respond favorably.
  Kirby Stone

  January 3, 2005 at 9:30 pm #2576
  JIm W

  Member

  My Mom is in Tucson–maybe 10 minutes from U fo A. I don’t know if her hematologist is associated with this practice. I do know that the original Hem that diagnosed her referred her to her current Hematologist. I will see where this current Hematologist is from.

  January 3, 2005 at 9:31 pm #2577
  April

  Member

  Jim ~ Boy what a way to start off the New Year
  Like everyone has said, Neil is the person to turn to. He has a list that he gives on what questions to ask. Everyone responds differently to this MDS. My mom-in-law had MDS for about 3-5 years before it transformed into AML. She was doing good but the probablem with her was that she had already had treatment for Breast Cancer 8 years ago (chemo/radiation) and this is how she “got” the MDS. She has opted not to go thru the Chemo/Radiaion again for the AML. I really hope that things go well for your mom. Please keep us posted as to how she is doing.

  January 4, 2005 at 2:26 am #2578
  JIm W

  Member

  I work for a Biotech Pharmaceutical company so I’m fortuante to have access to a lot of physicians who work with me-many with Hem/Onc backgrounds. Made a few calls today and was told that there are 3 great MD’s in Houston at MD Anderson who have a lot of insight and knowledge relating to MDS and RAEB-t. My brother and my Aunt (Mom’s sister) both live in Houston so there would be family support there for her. I have an appointment with my mom’s doc on the 27th and hope to get a lot more answers (I’m sure I’ll have a lot more questions) then. Thanks to all for the comments and suggestions. Keep ’em coming!

  January 4, 2005 at 4:16 am #2579
  Suzanne

  Member

  Jim, they are doing transplants on those of us over 60 now. A full with a perfectly matched sibling and otherwise “mini” and the new “Midi” we are just starting to hear about so don’t totally discount it until you talk with a mds specialist and look at all the options for her. Suzanne

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