Welcome to our little family, Janet. We have a great group going now, and it helps to compare notes.

Mike, we don't have a group moderator, it's just us'ns supporting one another. Gayle did a great job of persuading everyone to give names and info so that we can come closer together. Christopher is our patriarch, and we can all learn a lot from how he handles life.

I'm Sharon, age 70, live in the Sierra Nevada foothills of California, and I've had MDS about 2 years. As far as I know, I'm the only one in the group who wonders about heredity, because my dad had it, dying at 75.

I'm in the next to best group, & so far it's a slow progression. I have the max dose of Aranesp shots every 3 weeks currently. I'm lucky enough to feel rather well most of the time. My fatigue hits right after dinner, & most of my friends/family know not to call me then because I'm too tired to talk.

What breaks my heart is you young folks having this disease so early. On the other hand, new drugs are being tested, and maybe you'll have a better chance of a cure or at least a remission.

So, welcome, everyone. I'm going to print up a list of members so I can keep everyone straight.

Thanks Sharon and it's great to meet you and all the others here. I hate to see anyone get this junk but if we have to put up with it, it's better than the full blown stuff. I guess it can and does move into that for some down the line. My strength is my faith. I'm truley blessed in so many ways with family, a great oncologist, etc. When I go into the chemo rooms I see the impact of the chemos that others have to take and am blessed not to be impacted beyond added fatigue. Many who go in have to be there 12 or more hours with multiple bags of medications. I usually am out in 3 or so including waiting times. Next week is chemo week so that one and the one after are usually kinda low and dumpy but then start gettting fiestier LOL.

If you make a list with the names please pass it along. We all hope for a cure or even extension of time. I went from believing I only had 3-6 months left to having some good feelings about the next year to three so life is good, as are those in groups like this and of course our God no matter how you choose to have a relationship with Him.

God Bless all and have a great day. Spread some smiles cause theres lot's of folks out there that don't have it as good as we do and need a few right now.

Mike

Welcome LaDawn,
Glad to meet you. I am also on this site about 2 weeks or so. Everyone is very nice offering
comfort and support! I am sorry about your Procrit shots being delayed do to insurance. Were you feeling much better with them, and if so, can't your Dr. intervene on your behalf by
calling the company and or sending a letter.
I wish there was something I can do to help!
Fundraiser

I'm sorry to see so many people with MDS...I thought it was a rare thing, But I am happy to have some support for those that need it including me...I just wish there were more we could do about it. My husband has it and is waiting for the results of his latest bone marrow test, I'm praying that it isn't bad news, but with his blood counts so low, I'm afraid there isn't much to hope for. 10 more days to wait....

Sharon says I am the Patriarch..Well, well well. I am also the difficult one, occasionally the joker in the pack but also one is determined to live and live my life well, for as long as I can.

In August 2009, I was given 3 to 6 months. On Tuesday I had a blood transfusion, today I have been up to London left home at 6.15 am, and arrived home at 9.15 pm. Not a bad days work.

I am considering, and taking opinions on whether I should go on a clinical trial for Panobinostat.

There are many clinical trials, some for MDS sufferers, and I suggest you either Google Panobinostat, or Clinical Trials, and some of you will be surprised what you will find.

My message to all is this,
1. Be determined.
2. Do not give up hope.
3. Be determined
4. Do not give up hope.

Terminal prognosis is often wrong. With hope and faith and determination we can all do a great deal better than we believe.

Love and good luck to all
Chrisjb, Otherwise knows as the Impossible Brit!

Hi Janet,
So sorry your husband is not feeling well, and waiting for a report on his test is very draining on you both! I had never heard of MDS
untill a few weeks ago when I was diagnosed with 5q-. I also wish there was if not a cure some new and promising meds to help! All we can do is hope and pray in most situations that are not in our control, and, thank God for support groups such as this!
Fundraiser

Hi Chrisjb,
I hope your feeling ok after this mornings
event! I thank you for your strength, courage and determination! Something we all can use regardless of the situation we may be in!
Fundraiser

Janet, There is always room for hope. I had a bone marrow test a year and a half ago that had blasts of 23%. A doctor (not mine) reading the report told me I had full blown leukima and was going to die soon. He said he was going to arrange for me to be in the hospital within 3 hours to go through 2 months of intensed chemo therapy.

I told him that we had waited a couple of weeks for that report and a day or two for me to discuss this with my family and evaluate the whole thing was not going to hurt. He left to call my oncologist who told him he suspected I had MDS. I didn't even have my first chemo until after Christmas so I could have fun with the family.

Walking down that long hospital hall after being told I was about to die was the longest walk I've ever had, but by the time I turned the corner at the nurses station God had taken my arm and we've never looked back. Yes it's not easy, and yes sometime sooner than we would like I'll go to our Lord but in the meantime I'm living life to it's fullest. If that's all day in spite of the fatigue with my grandkids then great. If it's only 10 minutes at a time then I crank it up there. But I never give up hope whether it's for a cure, for a longer time, for more energy or whatever.

My wife, who obviously is impacted big time by all of this is, after the initial shock and some learning, of the same mind. Every minute we give up to worry, dread, "why me or us" or any other negative junk is a minute we can't enjoy life and each other.

There's not much we can do about it but pray, eat a cheeseburger if you want and plan on living life so we can slide into home plate with a big grin on our face, a woo hoo and a thank you Lord for such a good life.

Both of you give it all you have and enjoy every minute with hope in each breath.

God Bless,

Mike

Thanks Mike, Janet

Hello all. Yet another new member and I thought this was supposed to be a rare disease. I'm feeling less and less rare with every passing second.

I was diagnosed with MDS with RCMD in May 2007 and after tests was given a prognosis of three to five years. Under the IPSS scoring I'm now an Intermediate 1 having stepped up from low risk. My latest blood test showed;
Hb 12.3, WBC 4.29, platelets 46 and Neutrophils 1.78. All down a fraction from the previous tests three months ago.

I'm lucky that I'm under the care of the specialist team at Kings College London as well as still being seen by the consultant at my local hospital.

I feel a bit of a fraud as I look and for the most part feel well. Like many others I get tired as the day progresses but I'm in my fifties now and any excuse for an afternoon snooze is fine by me. I can now say to my wife, "this damn MDS," as I fall asleep. I don't have any other symptoms.

Looking forward to finding more about how others are dealing with this illness. Someone else wrote on this board that terminal prognosises (is that how you spell it?) are often wrong and despite being nearly three years into my supposed three to five I intend being around for a good while yet.

Hello andmcm,
I agree! I am sorry to say, I am also hearing much more of this since my own diagnosis, and I don't know if thats good or bad. It is a gift under these or any dire conditions to be fully aware of time and the beauty around us, shared with family and friends!!!
Fundraiser

Welcome, andmcm! I know what you mean about MDS supposedly being a rare disease. It's seemingly more common by the minute as we add new members.

I too sometimes feel like a fraud as I go about my normal business. But it comes home to me when I've met a deadline, as I did yesterday, and then fall apart and sleep 10-1/2 hours.

I compared your numbers to mine, & they're similar except for your platelet count. Is it really that low? Mine is still mid-range. Your hemoglobin count is still high enough that you probably are not getting shots, tho, or are you? Here, you have to be under 12 for Medicare payment (& my Dr waited till I was under 10).

We hope you will give us an easier name to use in our posts!

Hi andmcm,

I agree with you and others about feeling a bit like a fraud, but this only comes from what others can see. I've also had CFS and Fibromyalgia for over 15 years now and lived a pretty normal life, at least what others could see. The fatigue and pain has always been there but like what we have with MDS when we buckle up and work our way through it others can't feel there is anything really wrong with us.

The only real solution would be to let them have a few minutes inside our life but none of us would wish that on anyone.

Have a great day and weekend everyone. Smile and have some fun.

God Bless,

Mike

Welcome andmcm,

We share much in common, we are I presume both Brits, we live in the South of England, and we both go to Kings College Hospital, London, for regular second opinions.

I live in Storrington, West Sussex, and if you are anywhere near, it would be interesting to talk on the phone, or meet up and exchange thoughts.

I was at Kings on Weds 31st March and saw Dr Ho. Previously I have had consultations with the Professor, and Dr Ireland, both of whom impressed me. This time Dr Ho offered to put me on a clinical trial for Panobinostat, as I have moved on a little to Refractory Acute Myloid Leukaemia, but frankly whatever it is, I do not feel much different. We are both I blieve one of 700 in the UK. When I started with MDS in August 2008, my Platelets were at 66, Hemoglobin 10.5, WBC 3 and blasts 7%, and I was put into Upper Intermediate risk group.

I look and feel fine, and noboldy really believes I have a terminal cancer condition, but then I am not too sure that I do either. I have a firce and abiding determination to live a normal life, (I still work at 74 years and 10 months) and regularly drive to London for a days work, which is 70 miles each way.
My normal hospital, where I go for blood tests and consultation every 21 days is Worthing, and I am very happy with them, but pleased to have the greater expertise of Kings College, which is the Centre of Excellence for MDS and other Myloid conditions.

I am currently taking Hydroxicarbamide, which is a daily dose by mouth and is a form of mildish chemotheraphy. It will not cure, but has over the last 8 mmonths kept me reasonably stable. I have blood transfusions of 2 units, approx every 8 weeks, if my Hemoglobin drops below 8.5, which then brings it up to 10.5.

Let me know if we should talk, meet or whatever. Perhaps the safest way is to exchange email addresses.

Your real name would be appreciated.
I am Christopher Barr
chrisjb.

Hello All,

I just assumed my real name would pop up but I can see it hasn't. So, I'm Andy.

Chrisjb, I'm more than happy to chat via email, on the telephone or in person as and when time lets us. Maybe we should schedule our Kings appointments for the same day although you attend more often than I do unfortunately for you.

Warmest wishes,

Andy.