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MDS Survivor

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Published: May 1, 2009 12:00 am
MDS Survivor

Aldeane Sööt was diagnosed with myelodysplastic syndromes (MDS) at the age of 52 after a routine doctor’s appointment in September 2002. She received a bone marrow transplant from her sister in November 2002, and her MDS is in remission. She and her husband Peet Sööt jointly posted on their blog until July 2009, offering advice and personal recollections of their experiences with MDS, the transplant procedure, and outpatient care from the perspectives of both patient and caregiver.

http://www.mdssurvivor.com

19 Comments »

  • David Johnson said:

    Hi! I was just diagnosed with MDS–Refractory anemia, only dealing with too few red blood cells. White blood cells and platelets are normal. I’m looking to connect with others in this category of MDS. I’d like to know if or how rapidly this condition might worsen and how to make the most of life with MDS Refractory anemia/ De Novo MDS.
    Can anyone help me connect?

    Dave Johnson

  • Avatar image
    Julie Shilane said:

    Dear Dave,

    You may wish to check out Marrowforums. It’s a set of discussion boards for people affected by bone marrow failure diseases, including myelodysplastic syndromes. Hopefully, you will be able to connect with other patients with refractory anemia MDS through the forums.

  • Mary said:

    My son KGerard has just been told he has mds and of course he is very very upset, also his Wife and oldest child 14 and his family. He has low counts in red white and platelets…sounds pretty bad to me. i can see this can be gotten by his Son or Daughter also. Waiting for results June 11th. They have said it is worse than they originally thought. Working from home right now.

  • MDS Beacon Staff said:

    Hi Mary,

    We’re very sorry to hear about your son’s MDS diagnosis. We hope his physicians are able to manage his low blood cell counts.

    How were his results from June 11? We wish him the best.

  • Amy in Chicago said:

    Hi! Mary

    I’m sorry to hear of your son’s MDS diagnosis. How is he doing? My father was recently diagnosed with MDS. He has low Red and White blood counts. They have gone up quite a bit. The doctors are keeping a close look at his counts but because his doctors are from the V.A. hospital he’s not too sure about them. I hope your son is doing well.

    Amy
    Chicago

  • Donna said:

    My 86 year old mother had MDS and had done quite well through Revlimid, Vidaza, but not Dacogen but none have altered her MDS. She is now transfusion dependent with iron overload and our doctor has recommended Exjade for chelation. I find this drug’s side effects terrifying and I have just learned that it has not been recommended for older MDS patients by the FDA. Do any of you have experience with Exjade or its alternatives?
    Thanks, Donna

  • jay said:

    Donna how long has you mother had MDS. Mine has had it since 2006 and never needed a blood transfusion. She did go through revlimid treatment once.. She was scheduled for a bone marrow transplant but started having severe joint pains. And for this they took her off the list. Not sure why

  • Donna Lauffer said:

    My 28 year old son will celebrate his 3 year transplant anniversary on July 17th. On his last visit to Sloan Kettering they said he doesn’t have to have any more bone marrow biopsies and his checkups are now every year instead of every 6 months. We are very thankful for the doctors, nurses and researchers who have made such great strides in fighting MDS and other cancers. For those beginning their journey, take each day as it comes and know that there is hope. One of my sons nurses was a 5 year survivor and gave us mich hope for the future. Good luck and God bless.

  • Laura said:

    Hi all,

    My father, a once active, very healthy, 67 year old, was diagnosed with MDS in May 2008. Since then he has not been able to live a normal life at all. He had to retire and is not able to play golf or walk long distances, at all. We are debating if he should begin Vidaza to help treat his low platelet and red blood count or just continue to manage his disease through weekly transfusion. It’s such a difficult decision as we are very worried he will get sick through the chemo and it may not even work. Any words from others would help. Thanks! Best of luck to everybody!

    Laura

  • Jocelyn Sprouse said:

    My Dad,age 86, was diagnosed with MDS 2 years ago and is now transfusion dependent. Fortunately he has not had any complications so far alrhough the transfusions don’t seem to give him as much energy as before.

  • Ginger Carlson said:

    My husband, Robert, was diagnosed with MDS 6 yrs ago. He has been taking Decogen drip system since. However, I figured the Chemo was killing the bad cells and well and the good cells. Therefore, I had him take B-6 100 mg, B-12 2500, B-complex, which seemed to show an improvement. However, since he has been on this Chemo treatment for 6 years, his CBC numbers are showing signs of slow recup. So we are changeing Docs and confirming with 2 other Oncologist. Anyone wanting to share, please do so. Oh he cannot have a marrow transplant for he had a heart condition ( heart attack 1996) & is a Diabetic II since age 52 & was on Procrit & Revlimide which did not help.
    Thank you,
    Ginger – Wife

  • Rick Dee said:

    Hi Laura
    Sorry to read about your dad. Couple of comments; I went thru five sessions of Vidaza (Im 63) and never had ANY bad reaction to the chemo. They did give me something prior to the chemo so I wouldn’t get sick. I would highly recommend your dad try it. Also, be very careful with blood transfusions. I’m no expert but I read that after 12 transfusions complication can happen. Check with your doctor. You my have read on the other site that I was mis-diagnosed with MDS and only had a B-12 deficiency. Everyday I still take Folic Acid, liquid B-complex, and a one-a-day vitamin. Energy level is back to normal, played 18 holes yesterday. Good luck, stay in touch.
    PS Have an elderly friend (69) who HAD a ‘bone marrow cancer’ (no details) and went thru the entire stem-cell treatment, which took 5 months. He came home last friday and is cancer free. I’ll try to get all the details.

  • Shirley Bevacqua said:

    My husband Tony, who is or who was a young 64, was diagnosed with MDS in February 2011. His red blood cell, white blood cell and platlet counts are all low but not yet low enough for blood transfusion. He has been receiving injections of Neupogen to help increase his white blood cell and Eprox to help increase his red blood cells for a month now but no improvment as of yet in his energy levels. These drugs in Canada, for a 4 month supply cost almost $7500.00. He has also been seeing a Naturopathic Doctor who has prescribed B12 injections and other supplements such as Vit D, Omega-3 etc.
    We have been told that bone marrow transplant at his age would probably be physically too hard to go through.
    He is frustrated that he cannot do the things he used to do and right now probably has more down days than ok days.
    He will continue with this trial of injections and see if that will bring any energy back to give him quality of life.
    Best Wishes To All

  • ellen oneill said:

    I was dinoised with MDS, 6 year ago, at first i had blood tranfusions then i was put on 12,000 grm,s of NeoRecormon I used to attend Tallagh Hosiptal 3 day,s a week. now my dose is down to 2,000, a week also i go for a blood check up every 4 month,s, i feel so well plenty of engery.

  • nancy hopman said:

    hi, my daughter, 49 years old was just diagnosed with mds. she just finished 5 days of chemo. atg. now she going to shots and blood transfusions. there is a long story and many doctors that didn’t detract it over a year ago. what now she is complete denial. won’t listern to me or her sister. won’t ask for help or look the computer for all kinds of answers. we are all fusted.

    we suggest things,she won’t listern. we are at loose ends.

    thank nancy

  • nancy hopman said:

    hi i’m looking for someone who living in the area of south bend,in
    so that we can talk to this person. phone no. 574-264-1412.
    nancy

  • Coralie Munro said:

    Hello,
    I recently turned 62, am a white female of Irish/Scots decent, from New Zealand. I was diagnosed with MDS in April, 2008, given perhaps a short time to live. Also told I had hemochromotosis. Started on huge doses of Exjade ($8000.00 a month) and Procrit, 40,000 units a week ($5000.00 a month). Was very depressed, tired, weak, short of breath. Oncologist left the clinic so we went to Stanford for second opinion, where Dr Peter Greenberg’s MDS group is. Stanford confirmed that I did not have hemochromotosis, instead high iron was a side effect of the bone marrow’s lack of ability to make hemoglobins. Have been injecting 40,000 units of Procrit every week for 4 years. Feel bone pain and tiredness, but still working part time (officially retired), exercise 3-5 times a week, travel as much as possible. Suffer serious exhaustion, unable to work a full day, constant bone pain. My constant worry is how long I will live and with what quality of life? Can anyone else share their experience with me. I have never been a part of any forum in my life, but now my life seems to be so dependent on a scary and expensive drug with serious side effects. I feel chest pain, shortness of breath, seriously irregular heart beat, and have an oncoloist whom I feel to too overwhelmed to look at my problem in detail. I would be so very grateful for anyone else’s experience or opinion.

  • Bedra Ogdee said:

    My aunt who is 85 years old has MDS. We currently came back from Houston/MD Anderson. They want to put her on Arry-614 because after 5 treatments of Vidaza and 1 treatment of Decitabine the doctor said there was nothing else that they could give her. I was very upset when the doctor said that if she did not want the drug Arry-614 then she would only live for 4 months. How does he know how long a person can live. I need to get close to someone that can help me. I am scared to lose her. If anyone knows what else can be done please let me know. I would be so very grateful for anyone else’s exprience or opinion. Before I forget he also said that MDS was not curable. Is that true.

  • Linda Vuong said:

    Hi Bedra.

    We’re very sorry to hear that your aunt hasn’t responded well to Vidaza or Dacogen. You can find information on ARRY-614 here:

    http://www.mdsbeacon.com/tag/arry-614/

    We also have information on other MDS patients’ experiences here:

    http://www.mdsbeacon.com/tag/patient-interview/

    Finally, the only possible cure for MDS is a stem cell transplant. However, many MDS patients tend to be older and have other health problems in addition to MDS, so they aren’t healthy enough to receive the stem cell transplant. All of our information on stem cell transplants can be found here:

    http://www.mdsbeacon.com/tag/stem-cell-transplant/

    We wish your aunt the best of luck with ARRY-614 should she choose that treatment.