Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
Hi Everyone-I am a 36 year old woman who only began this whole nightmare three weeks ago. I brought myself to the er due to extreme fatigue and extreme shortness of breath. I was told that I was severely anemic hemoglobin was at 5.5. I was given three units of blood and admitted into the hospital for the night. An appointment was made for me at the heme clinic for blood draws the next week, I was holding steady at 8.8, the next week there was a drop, I had a bone marrow biopsy because nothing was showing up in my blood as to why this was happening and I got my results on Friday that I have MDS. The doctors used the the words Refractory Anemia with Unilineage Dysplasia. They have also mentioned 5q-deletion. The rest of my results will be back this Friday. I am afraid. I have a 12 year old daughter and a fabulous husband and I feel to young and healthy to have this disease. I get a little tired sometimes but nothing to complain about. My red blood cell count is low but my wbc and platelets are normal. They mentioned low risk and I will begin taking Revelimid soon. Please, any information will be appreciated because I research and it looks bleak. Many articles say 5+ years but at 36 that is not what I want to see.
Please don't panic yet. I know having MDS is a shock and quite scary, particularly in the beginning. First realize that the stats you find on-line incorporate all types of MDS (both high risk and low risk). It sounds like you are in the low risk category. In particular, if you turn out to have 5q- syndrome (defined as moderate to severe anemia, normal to slightly low white cells, and normal to slightly elevated platelets, with the only chromosomal abnormality 5q), you have the best type of MDS. Not that any type is good, but if you are going to have one, that is the one to have.
For 5q- the prognosis is good. Especially at your age, life expectancy is near normal. I have to be honest and say it is not normal, but it is nearer than most types of MDS. I was diagnosed with 5q- in 2006. Other than going to the hospital every two weeks for labs and a shot (I am in and out in 30 minutes or less), and my twice a year visit to my hemo, MDS doesn't affect my life too much. I do struggle with fatigue when my hemoglobin goes down, but right now I am sitting at 11! I don't know why so high, but I am enjoying every second of it.
So, you are wondering, I am sure, what is the life expectancy? My hemo has a patient who was diagnosed at age 47 (about the same age I was diagnosed) and she is still alive and kicking 30 years later. Additionally, a study was done in Germany which looked at patients who were diagnosed ages 49 and under. In the low risk MDS an amazing 87% were still doing great 20 years later with only supportive care (meaning transfusions and shots like I get-Aranesp). Additionally, if you are 5q-, the drug Revlimid which they are talking about for you has helped so many 5q patients go into total remission for years.
If at some point (and it is a big if) you need a transplant, your young age will be a huge asset for you.
Please don't believe all those dire stats refer to you. The majority of these stats were based on patients who had no treatment other than transfusions, and, as I said before, most incorporate all types of MDS.
I won't lie and say it is an easy disease. Fatigue takes its toll when the hemoglobin drops, and the meds are outrageously expensive, but it is not a quick death sentence.
Hang in there and have hope.
Zoe
I completely agree with what Zoe wrote.
I know it's a horrible shock. I know it's something very difficult to wrap your mind around. Don't let it rob you of life. Enjoy your family and the things you love to do. Find the joys in your life and live for them.
Don't read the stats. I have cancer in addition to MDS. I have one of the rare forms- I don't know if it's good, bad or indifferent yet. However, my cancer is very rare. When I ask my doctors what my prognosis is, they have always said to me that I'm my own statistic. We are. Ignore the numbers. Life for each day. Find the happiness and the joy. Depression and negative thoughts can actually promote help the MDS take hold. Defy it. Don't give it that chance. Don't let the fear run you. Let the beauty, love and relationships run you. You can beat this.
Ignore numbers. I happeh to love stats, but not when they apply to someone's life. We don't all fall under the bell curve. Thank God!! I had less than a 40% chance of being alive following my cancer diagnosis. I'm not in the bell, and I never plan to be.
God bless,
Sherry
I'm 38 years old with an eleven year old son and was diagnosed with del 5q MDS in 2008.Both my red and white cells are affected. I will begin taking Revlimid in September. I will definitely write later as presently I'm in a bit of pain from the bone marrow biopsy that I had today. I agree with what everyone else said. The best advice I can give you is to ignore the stats.... they can be very overwhelming.
Rachael
Welcome to the club -- I too am relatively new (June 1st) Yes it is hard especially at your young age but remember to keep a positive face -- continue to do what you have been doing (albeit at a slower pace & you could have a good -- add as many "threads" (friends) to your rope as possible: the more threads the stronger the rope & this is the right place to be.
It will get easier for you. It took me and my husband a couple of weeks to pick ourselves up off the floor after his diagnosis on May 26, 2010. And, like you, I read everything I could - some good, some bad. A lot of the information I read in the beginning was old and outdated and very, very scary. But since then I have found a wealth of encouragement on this forum as well as others, plus we got a second opinion, and I am constantly reading and talking with people.
So take care of yourself and try not to panic too much. It is a terrible diagnosis for anyone, but thank goodness, you do have a mild form and you are young enough for a transplant down the road should it become necessary.
I hope you have sent off for the information from the MDS Foundation.
Good luck and please don't look at statistics. Most of the prognosis charts were made before any treatment was available. I spoke with a lady a few weeks ago who has low risk MDS and she was diagnosed over 20 years ago.
Keep us posted.
Linda
Husband dx 5/26/2010; Vidaza 28 day cycle
I too was diagnosed when I was 36 and continued to work for another thirteen months after my diagnosis. My decision to stop work was due to a few factors; one my red and white cell count suddenly dropped from being stable to low. My husband & I also decided that I needed to spend quality time with my son as I was working up to twelve hours a day. Working as a Quality & Safety Manager for an aged care organisation was really rewarding, but I found that the intense workload was difficult to manage as the fatigue increased. I look forward to claiming back my life once the Revlimid starts to work, but will only go back part time as Ive enjoyed being at home with my son.
Its been nearly two years since I was diagnosed and Ive learnt so much about myself and that in itself is a gift, but when youre newly diagnosed you only see how scary it could be to live with MDS. Youll receive a lot of good advice, but you do need to filter it as every diagnosis of MDS differs. Currently I have a blood transfusion every three to four weeks. I find that after the transfusion I have two energy filled weeks, but then find that the fatigue returns with gusto as my Hb decreases. As it decreases I also experience severe nausea and dizzy spells. The specialist is perplexed as it occurs when my Hb reaches the early nineties, and it should really only happen around the eighties. It may or may not be related to an undetectable virus. I suppose what Im trying to say is that your case will be different to everyone elses, the common denominator is the drugs we take, the possible side effects we may experience and the labels we are given e.g. Del 5q.
When people say youve got a great prognosis because you have Del 5q or are a low risk MDs patient its because they are comparing your diagnosis to those with the severe forms of MDS. We get more years to battle this disorder. Honestly I can say that I get a little annoyed when people say the above because I really want to live to 100 and I dont regard been given 5 15 years as being fair. In saying that, I also now give no credence to the stats and will do everything to survive MDS.
The other aspect I thought I ought to mention is its affect on your family. My husband is amazing, but I know that when I have one of my spells or I have poor blood results that he is affected. Carers / family members need support too and I have asked both my families to ring more often, so my husband and son have other loved ones to talk to if they need to. In Australia we can access support from the Leukaemia Association who offers free support to carers and patients alike.
Good luck with the Revlimid, its great to see that youve been able to access the drug so early in your diagnosis. It will be interesting to see how the Revlimid affects us. Im looking forward to being in a cytogenetic remission phase.
Keep strong Jeanine
Rachael
Your words of wisdom are so eloquently stated. Your words are those that all of can live by. Thank you so much for sharing.
Sherry