Wow, after being a member for little more than a week, I feel that this is the best support site I have ever tried to be a part of! Thanks Dizzygal. We had to come straight to the hospital after the Oncologist appt. Platelet count-3.4 hematocrit-13.7! The best part of this evening is that it only took the bloodbank about five hours to get two units of blood. Recently, she has had to wait for days to get a match. So far so good. Also, the Dr. said my mother's spleen is so enlarged because it is "eating" up all the platelets. She is seriously considering having her spleen removed. She would have to go to Mayo Clinic or MD Anderson...some place with specialists that are willing to perform such a surgurey while transfusing platelets at the same time. To my surprise, my mother is suddenly interested in clinical trials too! So this hasn't been the greatest day by far...but has been the most encouraging with the new hopes of getting her platelets under control with the pending surgery! To answer your question dizzygal,right now my mom on gets arenesp shots and takes half of a norco every four hours for leg pain caused by myelofibrosis.
I haven't had much hope lately, like the end of her life was so close, but not today. We have something substantial to try that WILL work. Can I get an AMEN? lol

Absolutely delighted Pharmgirl, that you seem to be making some progress, and that you are more relaxed about your Mother. Yes the Spleen does seem to get a mention on all the written work on MDS. What is your Mothers Platelet count.?

Good luck, my friend.!
Chris.

Chris,
After 3 units of blood and a total of 18 buttons of platelets and the weekend in the hospital her Plate count is now 10 and hematocrit is 25. (the magic numbers to finally get discarged!)

Ok one of the meds that has been approved by the FDA to treat MDS is actually Chemotherapy but here is the site: http://www.vidaza.com/

Hi Pharmgirl,
So glad that your oncologist is being so thorough and has options for you and your Mom to consider.
When I had transfusions I only needed red blood cells, which is different from your Mom. My first oncologist gave me a whole blood transfusion, but my transfusions through M.D. Anderson were packed red blood cells, irradiated. The irradiation is supposed to help keep me from becoming intolerant of other people's antigens. I don't know if they can do this with whole blood, but you might want to ask your doc about the irradiation.
At my clinical trial doctor's, I remember a nurse working frantically to try to find a source of blood for transfusion for an elderly man who had had many, many transfusions, and was "allergic" or intolerant of so many antigens that it was really hard to find blood for him. I am not real clear on how this works, but do know that it is an issue with repeated transfusions.
Hope this info helps. There are so many issues that it is hard to know even what to ask, isn't it! Hopefully this support group can help bring up the issues, and you can get good support from your medical team.
Best of luck,
Anne

The first thing I asked was how many people have MDS. In my age group I was told, 5 people in every 100,000. So we are a bit rare, eh!!

I have written some notes to pass on to my family, and I thought my "other family on DS" should have the same. So here goes.....
"
I had my appointment today with Proffessor Ghulam Mufti, who is the UK,s expert on all Myelo conditions including Myelodysprasia and Myelo Leukaemia. His staff told me he is the worlds expert, but I cannot validate or refute that one way or another.

Four weeks ago my counts were: Platelets 48, Hemoglobin 10, white blood cells 3. That puts me in Category RAEB(2) and risk level Intermediate 2, though if things deteriorate any more I will become High Risk, and could pass into the Myeloleukaemia category.

The present indications is that I should last up to the end of 2009, give or take three months. However any infection or problems with any of my organs, could spell curtains!

To enable him to ascertain which if any Drugs Trial might do me any good, he needs a new Bone Marrow Biopsy, and in particular a Chromosone test, as Chromosones are intrinsically tied up with MDS. This will be done on 17th March, and I have an appointment to see him again on 1st April.

Some of the possible trials would involve:
Injections daily for 5 7 days then 3 weeks off, then the procedures are repeated 3 more times, so cover a total period of 4 months. Another is a daily injection and pill for 14 days then 14 days off. There are other variations but it all depends on whether Chromosone 5, or 7 are at fault, and a variety of other highly technical factors. However I may have to stay up in London during the periods when I am having actual treatment.

The treatments he mentioned as being possible include Vidaza, Decitabin, ARA C with Fludarabin, and Rivlimid.

Meanwhile I have my operation on my right leg on 26th February and will be in hospital from 25th for 6 or 7 days. I have other appointments on 3rd and 6th of March.
Meanwhile, other than being very tired I feel fine thanks. Odd isnt it?

We are off to Scotland on 19th Feb, returning on 23rd Feb.

Hope you are all well, I feel fine. Alleluia!

Chris.

Hi Chris,
The bone marrow procedure lets the docs do a genetic test to see if either the 5th or 7th chromosome are damaged. I have 5q-, which means that the 5th is damaged. The clinical trial I was in was Revlimid, specifically for 5q- patients. Most 5q- patients were able to go off of transfusions for a couple of years, with significant improvement of quality of life in that time. Revlimid is FDA approved in the US, and is an oral chemo - you just take a capsule. However, it has also helped people with other types of myelodysplasia.
Since your white blood cell count is low, your immunity will be low. You might ask your nurse or doc about that. My nurse said to avoid working in the garden (lots of germs live in soil ...??? who knew?), to avoid large crowds, at each docs visit or trip to the hospital, ask each person who touches you to please wash their hands, and take hand sanitizer to wash your hands as soon as you leave. No touching your face with your hands until you sanitize them. There may be some other things you can do to help protect yourself for infection. If your medical team suggests other things, could you please let us know?
As for your doctor's timeline, I say to know that that is an average based upon his experience, and that you may be the person to beat the odds.
Also, please let your surgeon who is doing the leg operation know about your blood counts as soon as possible, so he can take appropriate precautions.
Good luck with your leg, have a great trip to Scotland. Here's hoping that you find joy in every day!
Anne

Sorry to be so silent. I've been on a trip, and soon after I returned I came down with a nasty cold.

After reading about all these treatments, I have to shiver a little. I live in the mountains, so going to the Dr daily would be a hardship. Oh well, I must not borrow trouble yet.

Chris, your surgery is only a few days away. We will all be pulling for you!

Dear Anne,

Came back from Scotland with a frightful cold, must be soemthing to do with Scots wearing Kilts, and also with severe gum problems. Yes I was with many other people, and clearly I am subject to ever minor infection, and minor ones become a bit major, it seems.

Spoke to the Surgeon this am, and its up to the Anaethetist as to whether they go ahead or not, but in my present state I am not wild about being made to feel worse than I already do.

Thanks for the info on Chrom 5 or 7, and Revlimid. It did for you, lets see what happens on April 1st, when I see the professor again.

I accept your advice, and I will wash and sanitize my hands every time I am in contact with others, sounds like good advice. My wife puts it another way, she says all people and all places have "animals" swarming over them, and she is convinced that animals are the cause of all out problems.

If you dont hear from me later this week, it means the op has gone ahead, and I am in hospital, and I do not have a lap top to take with me.

Birdmom lives in the mountains and shudders at the thought of daily treatment, but I think I will have to stay in London near the hospital if I do go on a clinical trail. If there are any side efefcts a 2 hour plus car trip each way is not ideal.!

Chris

Dear All,
Yesterday I went to my local hospital in Worthing on the UK's South Coast, for my usual blood test.

8 weeks ago my results showed, Platelets 50, Red blood cells 10.0, White cells 3.0

Yesterday, Platelets 51, Red blood 9.9, White 2.9.

Allowing for the fact that the results are machine read, I have now gone for 12 weeks with virtually no worsenuing of the situation. This is very encouraging to me, and my family, and I now await my next Bone Marrow Biopsy on 17th March, and meeting with the Proffesor at Kings College London on 1st April, when he will hopefully decide to offer me a Clinical Drugs trial.

So, anyone out there with MDS, do not despair, there is hope in this world.

Love to all
Chris.

Chris, what happened regarding your upcoming surgery? Has that been postponed?

I'm happy to hear that your numbers are stable for the moment.

HI Chris,
So glad to hear that your counts are stable. Apparently many people stay stable for years without any big treatment, so hopefully you'll be in that group.

I am thinking of you and your surgery, also. Hope things are going well in that regard.
Anne

Sorry Girls, I thought I had posted some comment on Wednesday.

Well got to the hospital, on time. Waited in corridor. Eventually Doctor came (one of the junior sort) and he examined me and took some blood.
Then the Registrar arrived with his Lackeys.
I would have to go home for the night and come back 0730 am, on Thurday as no bed available for night. OK. Suits me to eat at home!!

But then......"We think it may be in our interests and in your interests if we postponed the operation until you are 100 better." I argued. Finally he told me, an hour later, or rather sent the Junior to tell me" Because you have a loose tooth, and your gums are swollen we cannot operate.

So that was the third time I have been in for the op. I just think it was never meant to be.

I* shall not do anything now. Just wait. Wait for the Bone Marrow Biopsy and seeing the Professor, and hearing about Clinical Drug Trial. If I go ashead, that could be another 4 months, taking me to August, then......we will see.

Love to all. Chris

Good news about your count Chris. I have talked to the Dr's here at the Clinic regarding getting a Trial started here and he said if I find one that I am interested in to let him know and he would see about getting one started here. However I really dont know how to start looking. Last time I went to my oncologist, I asked him about time of life. He said the reason he didnt say anything is because mine is in beginning stage and hopefully, by keeping a close watch on it, I will be Okay for some time. "I told him he better."

Great news for me, everyone. Today my counts were higher than they were a year ago when I began testing. Hemoglobin 11.9!!! Add to that the fact that I had a nasty bronchial infection for 2-3 weeks, & it's nothing short of miraculous. Best of all, I don't have to go back for 3 months.

Hip hip hooray. WEll done , you are certainly doing something right, so send us your recipe.!

I have a brief story to recount.

Sunday morning, eating a croissant, a tooth fell out (it was very loose) No problem on Sunday, but during Sunday night a baloon of blood hun from my upper gums. It burst, on Monday morning. UGH. 'Orrible!!!
So I went to my local hospital, third time in 7 days, and they fixed me up with a platelet transfusion, some pills and a mouthwash. Took all day. Left hospital at 4.00 pm, and went for a coffee and some ice cream, first food of the day.

Oh, what a pleasure it is to have MDS. Aren't we all soooo luckeeeee!

By the way I am losing weight, lost 8 kilos in the last 7 weeks. Only justification I can find for buying some new clothes.

Love to all.
Chris