Comments on: MDS Survivor

By: Coralie Munro

Coralie Munro — Sat, 28 Jan 2012 00:35:08 +0000

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.

By: nancy hopman

nancy hopman — Wed, 07 Dec 2011 23:41:08 +0000

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

By: nancy hopman

nancy hopman — Tue, 06 Dec 2011 22:58:30 +0000

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

By: ellen oneill

ellen oneill — Sun, 09 Oct 2011 18:23:24 +0000

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.

By: Shirley Bevacqua

Shirley Bevacqua — Tue, 20 Sep 2011 11:24:06 +0000

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

By: Rick Dee

Rick Dee — Sun, 10 Jul 2011 05:44:26 +0000

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.

By: Ginger Carlson

Ginger Carlson — Thu, 07 Jul 2011 22:03:00 +0000

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

By: Jocelyn Sprouse

Jocelyn Sprouse — Fri, 17 Jun 2011 03:06:30 +0000

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.

By: Laura

Laura — Wed, 15 Jun 2011 17:00:17 +0000

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

By: Donna Lauffer

Donna Lauffer — Sat, 11 Jun 2011 14:42:34 +0000

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.