Hey all,

Yes, when I say BMT I mean the Bone Marrow Test. My first test in Sep 08 was 23% on the blasts. The second one in Sept of last year the blasts were down to 7% and then this one back up to 22%

I'm blessed in a lot of ways witht he Oncologist I have. I remember sitting out in the waiting room listening to a lady talk about how much extreme pain the BMT caused her and several others joined in so you can imagine when the called me back I was concerened to say the least. I don't know the difference but I have yet, in any of the three tests, had any pain to really speak of. I've felt pressure, and when he goes for the actual marrow some stinging pain but that is all. The pressure comes from when he actually gets the bone/marrow sample combined.

I"ve lived a long time with significant back pain and fibromyalgia pain which is basically a part of daily life so mabye it's a combination of his style and technique and my pain tolerance that makes it not a problem.

I am disappointed that the blasts are back up but we'll try 4 or 5 every four week infusion sessions instead of every 6 weeks and see how that does. There are more toxic chemo drugs he can use but he is trying to avoid those as with dacogen I have very few side effects.

Rachael, I'm glad that you could be with your brother Michael at his death. I think that was important to you for many reasons. Yes, put up a fight for your health & life! You are so young, you deserve every chance. I can't recall if a BMT is a possibility for you--is it? My Dr says he has two patients who are doing well following it, one in their 20s & the other in their 30s. It's not an option for old broads like me. Chris is right about googling trials. I found almost 1,000 trials, some complete, some in progress.

Well, shuckins, Chris, I don't think I've ever heard an English person say "I reckon" before. We colonials may have taken a few...ahem...liberties with your language, but at least most of the time we can understand each other. We can even understand Aussies most of the time.

Oh, one more thing, Chris. I'm so glad you cleared up any possible misconceptions about the little boy.

Hello all,
What a nice group of people. So upbeat. Chris, have you considered applying for a clinical trial in the USA or European country that would provide you with access to Vidaza or Dacogen?? You might look at the trials at www.clinicaltrials.gov for MDS/AML and Vidaza. I don't know much about the other drug you are considering but I'm sure your docs at Kings College are experts in this matter. I wish you and all others in this forum the best of luck. Aflyonthewall

Dear One & All,

Chris - Lou says go for it...we want you to go for the drug trial.

Welcome to the newbies. It's such fun to read new posts. Our family has grown and we're stronger with our larger numbers. Welcome one and all.

We're counting down...just one week or 7 days until we leave for Hawaii. Lou is scared to death to fly (and we're flying) and he's not happy about leaving our 12-yr old Doxie with a dog sitter (but we're doing it). I can't wait...it will be fun. Lou will have fun once we get there!

On Friday we have our last visit with the Oncologist before we leave. Hopefully his numbers will be stable...I'll post again before we leave on Sunday...driving to Portland to fly non-stop to Honolulu.

Have a great week!

Lou & Gayle

Chris / Birdmom

Thanks for your kind words. All is ok. I am going to participate on a MDS phone link up with other Australian MDS patients. It may help to make further contacts and access information on local clinical trials. A Bone Marrow Transplant (BMT) is definitely on the cards, but even with the 80% success rate I won't be fast tracking that choice. I've never liked gambling and 20% failure rate is still too high for me. So it's a last resort unless unforeseen circumstances intervene. I have read recently that BMTs can be successful for older patients as well, but it depends on their health status...the healthier you are, the better.

Mikeyti

So sorry to hear about your last results. I'll be sending positive thoughts your way. I'm not sure why some MDS patients have to be awake for their bone marrow biopsy. I'm glad I wasn't awake for mine. The pain was'nt too bad, but it did last awhile.

Lou & Gayle

Have a lovely holiday in Honolulu.

Best wishes
Rachael

Hi Deb

Anthony Steele who works for the Leukaemia foundation in Australia runs a couple of disease-specific telephone forums. Anthony is starting one for people affected by MDS.

He stated These forums are designed to allow people with MDS to get together to talk about various issues around living with the disease, treatments and side-effects, and gives participants the opportunity to meet others with a similar condition. Talk Blood Cancer Web site

If you think you might be interested in joining this forum, youll need to contact Anthony on: asteele@leukaemia.org.au .

Best wishes
Rachael

Hello All,

Have spoken to the Co-ordinator for Drug Trials at Kings College London, and asked what leeway there might be, in starting the trial. I have in mind, a trip to Dubai, possibly Hong Kong, and one to Colombia before I start, but |II doubt very much whether the Haemo in cahrge will agree. I am used to dissapointment, (I get it three times every week, when I do not win the top prize in our Lottery)

Gayle and Lou, someday, when I have enough courage I will tell you about an extraordinary experience I had in Hawaii, when I passed through and stayed a week-end. It was about 26 years ago, and cost me about $700 dollars (US) as I recall.!!! Anyway, have a good time, and keep Lou away from pretty girls, that is my very best advice!

Newcomers, please keep posting, we have a fabulous discussion group, and the more the merrier, and the more we will all be able to learn and contribute.
Sunny today Monday 19th. but still the volcanic ash from Iceland, stops us flying anywhere.!

Love to all
Christopher.

Hi all, my mam was diagonised with MDS stage 2 in January of this year. None of her siblings are a doner match. She is on two injections at the moment one 2 times a week the other 1 a week she has had 5 blood transfusions since December her platlets have dropped to 1. Can anyone give me some information on what to expect in the future as i am very worried obout her.

Hi All.... I have good news to report, my husband's blood counts went up and they have postponed chemo again....his bone marrow didn't show much change, so they told him to go home and plant his garden and mow his lawn...he has to have a blood test every two week, but for now, go back to living a normal life....thanks for all your encourageing words, and I will still be reading about all of you and hope your news is as good as mine....Janet

Fantastic news Janet I'm delighted and know your feeling much better.

I just heard a cool saying on TV to plan on dying young as late as possilbe. Heck I've been saying to live like a kid every minute and get as many minutes as possilbe. Either way good plan.

I had a blood test today to prepare for tomorrows transfusion and the counts had gone up after a week of chemo. Just a point on a couple of them but go figure huh.

Have a great one all.

Mike

Welcome, Mahon. Our Christopher is probably the best one to discuss your mom's numbers with. A platelet of 1 sounds pretty darned low, but his have been quite low also. What are some of the other counts? What injections is she getting? What are her physical complaints? Age? Gosh, I'm just full of questions (& no answers!).

Janet, I'm so happy to hear some good news!

Mike, even a little improvement is cause for celebration. You sound very upbeat.

Aflyonthewall, are you a patient or interested party?

Dear All,

Low blood counts. The lowest my platelets have ever been is I think 7. The danger is bleeding, external and internal, and the internal sort is the most dangerous I am told; as if not caught early enough, and a transfusion of platelets organised, it may be difficult to stop. Bruising, for no apparent reason is another problem, I sometimes look as though Judith has beaten me up, so she probably should have from time to time, but she is not guilty of any physical abuse to the old man....thanks be!
Yesterday I joked about dissapointment, three times per week I do NOT win our National Lottery.

Today came real dissapointmnet. Thye research study co-ordinastor rasng me to tell me that the Doctor I saw at Kings College on 31st March, who was billed as the Registrar for the Panobinostat drug trial made a mistake. For some technical reason, to do with what treatment I have not had, I am not illigible to take part. He said in a letter to my Haemo at Worthing, my GP and me, that there were only two options for me, either Azactidine, costing 45,000 per year (US$ 68,000) which will not be funded by our National Health Service or the Panobinostat trial. That is baloney it appears, as I can stay on the Hydroxycarbamide I am on at present or go on a nother druga trial of which there exist great hopes. They have sent me 28 pages to read by email, and though I have read them once, I do not feel I have absorbed them, so will not comment at this stage.

I am very dissappointed. I feel badly let down, after all I have spent 3 weeks taking soundings with friends, family and Medical Gp and Haemotologist, all to no avail.

I will read, mark, learn and inwardly digest before I pass any further comment. My lips are sealed.

Janet, like your good news. Mike keep your determination up, and help your body get better, or at least improve and stabilise.

Love to all,
Christopher.

I'm wondering if this is the way MDS is, up and down of blood counts??? In the last year my husband has been on the verge of needing chemo three times, and then the counts go up, so they postpone chemo, then they go down, so they start talking chemo again, then they go up...each time it seems like the counts get lower, I'm wondering if anyone else goes through this.....Janet

Chris - darn, darn, darn. Don't those doctors know they're dealing with people's lives here? How could they make such a big mistake? I'm so sorry this has happened but I truly believe all things happen for a reason....take your trips and enjoy life (like you always do).

Welcome to our MDS family Mahon and all the rest of you newbies. Please share age, diagnosis, treatment, home town, etc. It helps us get to know you a little better.

Lou & Gayle Najera
Bend, Oregon

Gayle,
Thanks,

I am undecided what to do, but I am thinking that I will write to the Proffesor who is in acharge of the Haematology department at Kings, and tell him what has happened, and ask for an appointmnet to see him. Also beofre I decide, I want to talk again to my Haemo in Worthing, and my GP. The offer I have been made either involves a week in hospital on a drip, or 10 days of 2 injections per day, all multiplied by a number of cycles, so is time consuming, and disruptive of any travel plans we might want to make. Which one they would offer me is a lottery, as they put your name into the computer and the computer decides. Whatever hashappened to a Doctor's bedside manner.......?????? Perhaps I just yearn for the past, and another age long gone.

Had an Ultrasound scan of my tummy, last night, and I have a slightly enlarged liver, and an enlarged spleen. These are apparently, according to Google normal with AML, as are loss of appetitie and a whole variety of things.

I was fascinated last night as I went onto Google, put up, Acute Myelogenous Leukaemia, and found the article about a Proffesor refused Azactidine, and my comments which I sent into the Daily Mail (a Brit newspaper) all there on the web. However fame has not struck my way, cos I then put my name into Google, and I could not find anything on the first page. I know I am in there somewhere, but cannot be bothered to look through thousands of pages.

The new decision time on the alternatives offered, is elastic, and I have no intention of making any quick decision, or one that I have not thought about for a reasonable time.

Don't remember when you depart for Hawaii, but suggest to Lou he gets himself Hypnotised before travel, then he will have nothing to worry about.!!!

Love to all
Chris.