Dear Rachel, Ally and Sharon,
Thanks for your thoughts on the possible trial opportunity. I really want to hear lots of thoughts from lots of different people, and I am going to compile everyones thoughts into one document, and see whether combined opinion will help me to see things clearly. Being me, it could totally cloud the real issue, which is to get cured, and live a long happy life.
So here I am on Good Friday, absolutely delighted that DS has given me the top spot for the day, on the Home Page and that makes me feel very honoured, and I suppose must also support all MDS sufferer, or at least advertise to a wider audience our problems.

Smoked Salmon and cheese for lunch, fish tonight, YES we are very conservative. Had a long sleep after breakfast this morning, and feel well.
Happy Easter to all.
Christopher.

Hello, Bird mom232! I apologize if I ask a question that you may have already answered in this long thread...it is 2 in the morning where I live and I can't sleep. I go to see a hematologist this coming week; I have had problems my whole life with anemia and low white blood count. However over the past couple of weeks it seems to have come to a head. I was diagnosed with Epstein Barr with a white blood cell count of 2.1. My PCP told me I was also anemic. I took a week off work, went back to my PCP for a check up, and my WBC had gone back up to 4. However, after the week I returned to work, I felt very faint on Saturday, and then the following Monday I passed out three times. I was taken to the ER where they gave me a liter of fluids, and my blood pressure would drop every time I stood up. That seemed to subside a tiny bit after the fluids. Went back to my PCP and my WBC was back to 2.7, at which point she referred me to a hematologist. The dizziness and wobbliness has subsided a bit, but it has taken 4 days to do so. I still don't feel 100%.
I know it's premature to worry. I've just been trying to do some research on it and myelodysplasia was one of the MANY things that COULD cause low WBC. I'm well aware it could be something as simple as a vitamin deficiency, or related to the fact that I have an auto immune disease of the spine (ankylosing spondylitis).
I'm not necessarily looking for an answer, but I was already a member here and figured why not ask people who have this disease? I understand you are not a doctor and Lord knows I'm not, but I am curious to know what your symptoms were. Any light you could shed might put my mind at ease, or help me understand what could be happening.
Thank you in advance!
Sara

Dear Isisprincess,

You have all our sympathy, but I feel that the only way you can be diagnosed as having MDS, is if you have a bone marrow biopsy, which will tell your haematologist exactly what is wrong. MDS is not a condition of the blood, it is a condition brought about by the bone marrow not doing what it should do to produce the right type of blood. In time you could be diagnosed as having MDS, but no haematologist can say this is so, without a Bone Marrow Biopsy. If you are offered one, take a bit of advice from me. Refuse to have one unless they give you sedation. Though it only takes 5 minutes, it is I understand very painful and uncomfortable without sedation.

Good luck, hope you all get lots of Easter Eggs and enjoy them.!!
Chris

Isisprincess, indeed you have many possibilities. Your WBC is quite low, and your other symptoms may or may not put you in our "family." My own diagnosis began with anemia, then blood tests to determine which type I had. I think the "simplest" is iron-deficiency anemia. Have you ever been checked for that? Over a period of months, two types were eliminated, and that called for a bone marrow biopsy to make certain of MDS, as Chris said.

I had mine without being under, and I agree that it is quite painful, altho the procedure is fairly short. I'm not sure whether I would do it again without being put under, being a devout coward.

My advice to you is to hang in there until your hematologist can verify or eliminate the many possible causes of your anemia. Too soon to think up all the dreadful possibilities!

I hope you will let us know what happens. You are very young, so let's all hope that MDS is not the cause.

Chris and birdmom thank you so much for taking time to reply to me! Thank you Chris for clarifying exactly what MDS is. It does make me feel a little better. I also appreciate the advice on bone marrow biopsies- I will certainly keep that in mind.
Birdmom I am unabashedly a coward- I hate needles! I think I would have to go along with asking to be sedated if they were able to.
Again thank you both for your kind words. I will certainly keep you updated! Happy Easter to you both.
Sara

Oh and birdmom I meant to answer your question about iron deficiency anemia- I have been taking over the counter slow FE for some time. My PCP was quite surprised that my iron was low even with me taking slow fe. So I'm really not sure what is affecting it...I understand I could have vitamin deficiencies (from research I've done). Thank you also for shedding some light on the time line it takes to diagnose this disease. It helps to discuss this with someone who has been there, so in the event I have to have multiple tests that take a couple months I will know what to expect! I hope you have a beautiful weekend.

Hi all,
I just joined and was diagnosed with 5q-syndrome and will begin lenalidomide 5mg treatment on 4/9/10 my red cell count is 9.9
I am 65 and very confused. I sure would like to speak with someone who has similar feelings.
Fundraiser

Dear Fundraiser,
It gives me no pleassure to welcome anyone to this little group of MDS sufferers, but we are in general a fairly happy band of pilgrims who try, very hard, to help each other. I cannot help you on 5q,but there are others who post on this site regularly who can, and I am sure they will, as soon as they see your contribution.
I do not understand 5q, and I am sure you will not understand what it means that I have (described by Birdmom as "a crummy side issue") trisomy 8.
But good luck anyway, and do please keep writing in. As you will see we have reached contribution 428, so that is an indication that we are very active with words, even if half of us spend most of our time falling asleep, cos of Refractory Anaemia.

Regards
Chris

To all sufferers from MDS, AML, and all other types of cancer, who are fortunate enough to live in Great Britain, but unfortunate enough to have Gordon Brown as a Prime Minister, and a Labour Government in Power.

We are to shortly, most probably on May 6th, to have a General Election. The Leader of the Conservative Party, David Cameron, has announced that under a Conservative Government, all Cancer sufferers, funding will be made available so that all cancer sufferers would get access to drugs that are currently refused by NICE (or as Ally Boyle has renamed it )NASTY. This should mean that there will be available to us a drug called Azactidine, which will benefit 700 people who have MDS in the UK.

Whoooooooppppppppeeeeeeeeeeee!!!!!!!!!!
Christopher,
(and no need to ask who I will vote for!)

Dear Chris,
Happy and Healthy Easter to you and others on this site! Thank you for your kind and quick reply.Looking forward to hearing from others as you sAID. I HAVE ALWAYS BELIEVED, " IN UNITY THEIR IS STRENGTH"
Fundraiser

Welcome, Fundraiser, and happy Easter to everyone.

If I remember correctly from my initial research, 5q was the "best" group to be in. But don't quote me, as memory isn't my most reliable component.

I will leave it to others in our group who may share 5q to give you more info.

Chris, vote early & often, as they say in Chicago. That would be good news indeed! Maybe Rachael will have to move to England to get her share, assuming that your man wins. And that he can keep his promise. (In the Hew Hess Hay, no one holds their breath about campaign promises.)

Isis, interesting about your iron deficiency. When I was first diagnosed with anemia, the nurse practitioner put me on a ton of iron supplements. Unfortunately, I wasn't iron-deficient, & taking in extra iron was not a good idea. I never quite trusted her again. But I can understand, because it's the most common cause of anemia.

Welcome newcomers...and all MDS sufferers in general,

Lou has had two BMBs and he says they really didn't hurt, but for a second. Ha - they're awful. I sat through both of them and he simply doesn't remember. I can assure you I would never have one without plenty of drugs onboard first.

Chris - by all means, try to get accepted into the trial. While the numerous drives to the hospital may seem to be a burden, they give you a purpose....just know this trial will help to identify a great new drug that may help you and others with this crazy disease.

Happy Easter to all - Gayle & Lou



Our drive to Spokane was uneventful. The weather held for us, however, it was storming all around us. We enjoyed two great dinnerw with Lou's daughter and we even had breakfast on Saturday morning before we hit the road for home once again.

It has been years since we visited and we now vow to do it more often. We all enjoyed a great visit.

We enjoyed Easter breakfast with close friends. I made a great recipe...it's great because it is made the night before so all I had to do this morning was to stick the casserole in the oven and set the table. Now we're resting up and hoping to find space for more food as we've been invited out to Easter dinner tonight.

Enjoy the day...more later.

Thanks for that bit of info about the iron deficiency, birdmom. Another helpful thing to keep in mind!
I typically get very anemic when I'm menstruating, such is the case now. I suppose that's something I can discuss with the hematologist.

Take care,
Sara

Dear All,
Not much to add today, Easter Monday, which is a public holiday. However this morning I had to gett the main sewers that serve about 100 to 200 houses round here, as the drains near us were blocked to overflowing. I wonder if anyone will pay me triple time???

Having uncomfortable gastric trouble. I have been recommended to have a scan, as this has now being ongoing for about 6 weeks, and doesn't get any better.

Tomorrow Tuesday blood transfusion GRHHHHHH!

Vote Conservative and get cured. Yes please.!!!!
Chris.

Hi all,

Just found this group and thought I would join. I hope I can contribute. I was diagnosed 1 1;/2 years ago when BM test showe blasts at 23% but history of blood tests showd was MDS instead of Leukemia. Been on Dacogen since every 4-6 weeks.. Blasts have dropped to 7% and although low, the blood levels have all leveled off. Biggest issue for me is the fatigue. It's somewhat over powering at times but the Lord and I walk through it all.

I look forward to new friends to chat with that know what we mean when we say things.

Taked care and God Bless