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...
Hello, everyone. I just joined your group & read everyone's posts. I was diagnosed April 2008, but know that I had anemia at least during the previous October, because I tried to give blood & was turned down.
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
I am sorry about your diagnosis,now that being said I want to tell you not to panic. I was diagnosed the end of August 2010. In July I went to the er after weeks of feeling the most extreme fatigue I have ever felt--you know the feeling. I coulnd't breathe if I was moving, I was light headed, etc. In the er my blood results showed that my hemoglobin was 5.5! I was admitted to the hospital and I was not showing signs of anything, leukemia, cancers, MDS. I was transfused and released the next day with an appointment to return on Tuesday for a blood check. Once again I ws low, 6.7. The doctors were thinking I had the parvovirus (a virus that is common in children but can affect the bone marrow of adults) as I am a first grade teacher. I had a bone marrow biopsy and learned that I had MDS-refractory anemia with unilineage dysplasia. My MDS does not affect my white cells or my platelets, just myred cells. I spent the week-end crying-for me, for my husband, my little girl, I was terrified. I had never been sick in my life. I pulled myself together and started to research. A little advice, stick to the American Cancer Society, The MDS site, and other reputable sites. I started a notebook filling it with vocabulary, and other information that I felt I would never remeber (you remember!) I wrote down any questions for the doctors. By the time my next appointment rolled around (five days later) I was an expert which I am sure you will be as well. I asked my questions 100 different ways, made the doctos repeat stuff, asked them if what they were saying was the same in people language as it was in doctorese! I was started on a medicine called Revlimid and now less than four months later my red cells are normal, 12.6 at my last appointment 2 weeks ago. I have not been sick once. I had/have some side effects of the medicine like bone pain, dry skin, belly stuff but nothing that I can't handle. I continued to work even in September when my counts were still low 7.9 and 8.1, etc. I just sat more. I try to stay positive at all costs and I feel that has had a huge impact on my treatment. I don't consider myself sick. When my counts were low and I was feeling tired, I just thought to myself"well, of course I am tired I have, it's normal to feel tired when you have very little oxygen in your blood" I didn't let it get me down. If something hurt or I had to rest going upstairs, I always said "well, it is better to feel this than the alternative". Put everything in perspective. Don't let the statistics scare you. The stats are based on older people as MDS is not common in younger people. I am now awaiting a bone marrow transplant (just need a donor) as it is the only cure for MDS. Steve the first couple of days are the hardest, once you get through these first few days and you are armed with information, you will begin to feel empowered. We have age on our side. If you need to talk or want advice just send out a shout. Stay healthy.
First you've found the best group around for support and prayer. Folks here have been through all levels of this junk both on the having it side and the care giver side so we know what your feeling and facing. As you have already been advised, learn all you can here, elsewhere on the net, write things down, and insist that your docs spend whatever time you need to be sure you have the answers to your questions. I went to my doc the other day for regular appt and told him we needed some more time than usual that day, and in spite of a overload on his schedule he sat back and said let's do it. A half hour later we were done and I had what I needed. Where ever this goes with you, make sure that, just like Elizabeth Edwards lived and said, that you are not a victim of this disease but the disease, through your making every day worth as much as possible, is the victim of you. Two and a half years ago they told me I had 3 months to live and probably wouldn't make Christmas. A couple of weeks ago I had my 95th chemo treatment, am still in spite of my blodd counts considered low intermediate and headed for my third Christmas with my gang since diagnosis. Keep it in the Lord's hands each day, know your being prayed for and that your prayers are appreciated as well.
God Bless, Mike
Steve,
Welcome to the Leaky Boat Crew. Im sorry to hear about you diagnosis. Mike and Jeanine have given you excellent advice on what MDS may bring. I was diagnosed in 2008 with MDS Del 5q with both my neutrophils and haemoglobin affected. I worked for another year until my counts started to drop. Like Jeanine, Im also on Revlimid (4 months) and it has really improved my energy levels and my general well being, though I have experienced numerous side effects. Im now feeling well enough to return to work and have my old job back starting in January 2011. MDS affects people so differently and so you may end asking why one treatment works for one person and not for yourself when you have the exact same diagnosis.
To answer your question about blood transfusions, they are used to increase your haemoglobin (red cell count) or if you have low platelets a platelet transfusion. Transfusions only help to improve our blood counts and tend to last for short periods. For me a transfusion would last for about three to four weeks before I needed to be transfused again. As the illness advances the need for transfusions increases, for some this can mean multiple transfusions on a weekly basis.
Bone Marrow Transplants are the only cure but with medical advancements and considering our young age I think we may have more options for the future. I want you to know that you are not alone in this and that this forum in particular is incredibly supportive.
A bit of good news.........we in Australia have had a bit of success with the PBS approval of Vidaza. This means we dont have to pay for the drug. It costs around $45,000 for six months. Revlimid has not yet been approved; it seems it may be a couple of years away.
Rachael
Steve thank you and so nice to meet you, although I wish it were for different reasons. Good luck on your journey! I am here for you too!
Our young whippersnappers in the crew have already given you some good advice, & all I can do is give you support. and encouragement
I'm much older (71), so BMT is not an option for me, but I'm so happy to find that Aranesp is working well for me. How long will it? Who knows, but in the meantime I feel almost 100% normal.
Try not to let the disease define you. If you've read our old posts, you will be inspired by Cap'n Chris, an incredible man who refused to be a victim. He advanced to leukemia, but died doing what he wanted to do, outliving his doctors' predictions many times.
My husband Lou has been having difficulty breathing...and doctors have determined he has congestive heart failure. It's a terrible combination to have with MDS. In September he had a heart attack due to his low blood counts (he had an 8.2 hg). For the past several months he's been dealing with breathing difficulties. It seems every time the doctor sees him and wants him to return in 2 weeks...we manage to return in just one week because the breathing hasn't gotten any better.
Friday his hemoglobin was 9.3 and the oncologist wanted him to see his cardiologist for his breathing difficulties. We got in to see the cardiologist yesterday (Monday) and he ordered a pulmonary function test. Saw his oncologist again today and his hemoglobin was down to 8.6. The new goal for his hemoglobin is high nines so his heart doesn't get too stressed.
Lou receives a transfusion of two units tomorrow morning at 9 a.m. with a blood test on Friday to see if he needs more. Wow, he seems to be running downhill right now and it's killing me.
Our annual holiday party for 26 close friends is on Sunday and I'm hoping he's up to it. I'm trying to maintain a normal environment...but that's pretty difficult when I'm trying to keep Lou's outlook in a positive mode and I'm trying to work full time.
His oncologist says the next step is chemo but is willing to wait until Dec. 28 to start the new drugs. As many of you know, upon starting chemo, Lou may lose some ground on his blood counts and require additional transfusions until he starts to improve again.
Keep your fingers crossed for everyone dealing with this crazy disease and pray you don't have heart troubles too as it makes you extremely vulnerable to MDS.
When Lou starts getting upset with his circumstances....I say somthing like, "how would Captain Chris respond to these same circumstances?" We miss Captain Chris's positive messages and strong perseverance. I'm glad to see so many new posters. Keep up the good work everyone.
Lou & Gayle Najera
Bend, Oregon
Gayle and Lou.
Being positive is what fighting this stuff is all about. I can't tell you anymore than Capn Chris could that it will heal us, or make life longer (though I think there may be something to that) but it will make whatever we have, with or without this junk, much better in quality.
I had a heart attack three days before 9/11. They lost me once in the ER and once on the helicopter. I had a lot of shortness of breath for some time before being diagnosed with MDS and I think they thought it was related to that but a stress test proved different. They have lots' of meds that can deal with congestive heart failure and related stuff. They thought my wife had it but a sonigram proved her heart was in perfect shape but the doc assured her that even if it was real they could deal with it.
As I have said, they gave me 3 months to live 2 1/2 years ago and I'm still pestering them LOL. Now do I/we have times with negative feelings,,,,,yea you bet. But there are two sides to it. After 95 chemos I can tell you that going in to get that stuff pumped into my viens is a two sided thing. First I hate the process, don't want to go and don't want the side effects even though mine are mild. But the positive side takes over very quickly and our God reminds me about the miracle that they can have this stuff that they can put in you that targets one thing and leaves other parts alone and keeps you going.
All I have to do is look around and see how much, this minute, I am blessed with and am enjoying to know that if my time comes tomorrow I will not have wasted this moment in time. Capn wrote me once about how having negative moments now and then is ok because they just make the positive moments feel that much beter.
On Monday my hgb was 8.4 which considering it had been 6 wks since a transfusion and two weeks since chemo was pretty good (it gets down into the 7's) but because of the fatigue and breathing symptoms they went ahead and gave me transfuisions yesterday. I can tell you that on occasion I get a bit dumpy about going in and having someone elses blood put in me but at the same time am thrilled at the blessing that someone would donate it and that they have the miracle of being able to make it happen which keeps me feeling better and all my innards working better. I'll be able to keep up with all the grandkids coming in next week too LOL.
One of or family is a 30 year old downs syndrome guy. He's been in the hospital, mostly the ICU, for the last couple of months. He surley has his cranky moments because he's scared and can't understand all that is going on but most of his interaction with others is kidding and a huge smile on his face. That is contagious to everyone around him and is amazing to watch.
Every minute we give to being negative about any part of this is one robbed from enjoying and making the very most of each minute we have. We don't have to have MDS, heart disease, cancer or any other illness to have a guarantee of even one more minute in this life so we all need to give it our all every day. It's much more fun being positive and telling this junk that we are in control of our lives and are not going to let it have a chance to ruin even a part of us.
This is already a long post so I'll leave it with please tell Lou to take a couple of minutes now and then and be dumpy because that's ok. but to do as Elizabeth Edwards said, and make every day the most positive impact on life that he can. I wrap my arms around the blessings of life and enjoy the heck out of it. And added to that is our wonderful caregivers. We can see the love of you and Posh in your posts and I see so much in my great wife. I also see right through her postive nature to see the hurt, concern and other things that she has too. But she says she wants to squeeze as much out of each moment we have as possible so you make sure to look to the good side as well.
Sorry for the long post all but it's huge to be as positive as possible because that is what, not only will make our lives better, but I'm convinced that all our innards work and fight a whole lot better when we're optomistic and positive than when we're dumpy. Besides life is a whole lot more fun that way and that is what we should be about with what we have. Capn Chris liked it better that way for sure.
God Bless everyone and have a great rest of the week.
Mike
BTW my blood counts have been for a year or more, in the mid to upper ones for WBC and the 7 to 8 range for hgb and below a hundred on platletes (the plts were 23 Monday but will go back up). If I go and have blood tests for some other reason I have to tell them not to panic that these levels are normal for me and not to rush me off to the ER. The bottom line is that we work with what we have. I've made a huge amount of friends in the doc's offices and infusion and transfusion centers and we all enjoy ourselves greatly when we're together in spite of why we're there. So while the blood counts are an obvious concern it's just part of the deal and life itself is more important to love and enjoy than to sit around and worry about this or that count or other symptom.