Hey all,

Janet my blood counts were a very gradual drop over a period of a couple of years. At one point a GP doctor that I was seeing noticed the trend and started me in a direction with doctors that over the phone said we don't know what you have but are going to start treatment.

I've already been through the history of my treatments with the oncologist I found on my own but the same thing holds for me anyhow tha the counts have been on a very gradual decline but basically holding steady at low levels since I've been on the Dacogen. The obvious desired result is for them to start back up but as an alternative holding steady is good.

To Chris and the others living in England, my oncologist is familiar with your NICE system over there and it appears there are some 15 or 20 drugs that he uses quite successfully (either for remissions, stopping the decline or comfort/functionality treatments) that are not approved over there. I know he was/is concerned that the new health program here may one day go that way. The Dacogen, for one week (i.e. 5 infusions) has a billable cost of $35 thousand US. Of course insurance or medicare don't pay anything close to that but still even if they only pay half that's pricey. I don't know how they make their decisions over there but got the impression that the "bang for the buck" anaylisis someone mentioned on a treatment that cost $45 thousand over there was not approved, and this is sad as, not living there but with simple impressions from here, if the govt is going to provide the health care they should be allowing and using the most up to date treatments available.

I hope you get it worked out soon as often the mental junk is as bad as what your being treated for.

My Dad was diagnosed a couple of weeks ago. His is to the point though that they wanted to start him on chemo right away. His counts dropped drastically in a 2 week time frame. The dr said with no chemo he only has about 6 months. with chemo maybe 2 yrs. He has been anemic for awhile now but his numbers really dropped last June. They thought the anemia was from his one kidney but now we know it was from mds. I am glad I found this website.

Hello all,
In answer to your question, birdmom, I am both a patient and an interested party. I am just wary about putting too much private info on the web. I get along with a hemoglobin like yours and a very low platelet count without any treatment so far. Some low risk people can do very well for years without treatment. We are all different. Chris , I would ask your expert at King's College if he would have used Azacitidine (Vidaza) or decitibine (Dacogen) for you if NICE had approved it, instead of a clinical trial. I think Celgene is charging too much for the drug but I think they are appealing the decision so maybe there is still hope that you could get it. Keep calm and carry on.

Hi everyone. My name is Julie... but I wish I was BIONIC.

This is a very interesting place to come. I've been struggling with bone-marrow issues for years, and recently (at 34 years) diagnosed MDS. Last platelet count: 34 which is improvement. Other counts ok. I am single and glad to not have a young family to worry about... but what to do while I am watching and waiting. Getting on with life is hard when my Dr's are discussing transplant.

They are thinking that my MDS in due to my treatment for Aplastic Anemia. So what saved me the first time around, is now going to cause me strife... thanks for listening to me. I know so many are in the same boat. Take care all...

bionicJ

P.S. Wondering about my cromosomal abnormalities... as you do!!!!

Does anyone know if they can change over time? Example, can low-risk MDS become high-risk?

A great big welcome to Poshshorty in the USA and BionicJ in Australia, it is great that we are widening our membership, the more the merrier, though of course like us, you really did not want to join!

We are all in the same rather leaky boat.

Answering a few questions, yes, one degenerates, and can start as low risk, and as things get worse go to Intermediate 1, Intermediate 2, High Risk, or be diagnosed, as I have been
with Acute Mylogenous Leukaemia. One of the markers seems to be, how many excess blasts one has, and when mine went up, I seem to be labelled AML, haviong as it were crossed the boundary.

As for the cromosomes, 5q, seems to be the common one, I have heard of 7, but I am the original with Tinomy 8, i.e. three Cromosome 8's.

Well here we are, write and tell us aall about yourselves, where you live, what you do, family etc, as it all helps.
My final word is always the same.....Be determined to see it through, be determined to live, be determined that you will not allow MDS to get you down. That is I believe the best way to continue to enjoy a life.
Love to all.

Hi there! Thank you fro the welcome. So glad to chat to someone so positive! I love the leaky boat analogy.... made me smile. I will type exactly what the Dr wrote down for me about my cytogenics:

trisomy 1q (1 extra)
del (12p) - lost small bit of chromosome 12

This doesn't mean much to me!!!! ............. ?

bionicJ

Your report means nothing to me either. As being Trismy 8, means nothing to me. But I guess these are our individual bone marrow problems, and they all seem to point to one thing, theleaky boat syndrome or MDS, or whatever you care to call it.
Keep smiling, and don't let it get you down, or put another way "Nil illegitimae carborundum". If you need a translation for the Latin, I can give you it in English, but my Oz is a bit rusty these days. Where do you live in the great Island????
Love
chrisjb.

Welcome, Poshshorty and BionicJ. And thanks, Fly, for letting us know that you're a fellow sufferer.

I can't help with any of that abnormal chromosome stuff (fortunately, my group does not have that problem). I venture to guess that it will be a matter of you educating us. We can support, but all our combined knowledge wouldn't plug a single hole in our leaky boat.

If it's day-to-day coping, well...we can offer a little bit there. I am wondering about the prevalence of members from Aussieland. Don't know what to make of it. Something in the water, lol?

Sharon, No No NO!
Its not something in the water in Austrlia, not the fact thay they speak Strine,
its a massive failure by the Wizard of Oz, to protect their citizens.

Bit like our NHS service.!
Chris

Thanks guys. You keep me laughing!

I read some "stuff" about chromosomes last night and it really did my head in! So much talk that I don't understand... but I guess you're right in saying that knowing and understanding it, still deosn't plug the leaky boat! ... watching and waiting, is still watching and waiting...

Have a great weekend y'll! Take care, til next time...

~ bionicJ (Jules)

thank you for the warm welcome! I am here for my dad actually. he was just diagnosed about 3 weeks ago. he has had many transfusions since the end of December 09. He is about to get 3 more units probably bringing his total to right at 20 since it began. The dr says he will go into aml at some point and possibly his body will start rejecting the transfusions. Right now though he says he feels better than he has in a yr. Again I am glad I found this website!

hello poshshorty,

I read these posts daily and the people on here are a great source of keeping the spirit up and information. I wish i had found it earlier . I dont comment much because I dont want to be negative so I keep my thoughts to myself generally. I have researched this MSD until it makes my head spin and i still dont understand it all so good luck with that. I read recently that early exposure to petrolium sp? plays a huge part in getting this. I immediatly thought hmm my mom never even pumped gas but thinking back she grew up and lived by a railroad that dropped coal etc so who knows what she was exposed to enviormentily as a kid

my mom suffered from MDS for 2 years until her death last may. I dont know how old your dad is but mom encountered this beast out of the blue at 71. her transfusions monthly were pretty much the only source of anything that made her feel a bit more spry. we looked into a bone marrow transfusion from possibly me but the dr said at her age it wasnt possible. i dont want to be a negative nelly and forgive me if this upsets anyone. my advise is do as the people here suggest enjoy life with him as much as he is up to it.

the one thing that keeps me going is mom and I spent a lot of time together prior to that and had a great relationship all through life. keep your spirits up who knows what technology will come up with on this..i wish the best to you all ....

Hi, group! I've been reading everyone's comments for quite some time & argued with myself as to whether I should add my 2 cents. However since everyone's case is a little different - - - my husband is 70 and was diagnosed with MDS in Jan. 08. He has other health issues - heart & immune system - so this is just another layer. At the onset, he was on Aranesp injections. That didn't last long. Blood transfusions started in the fall of 2008 and for most of the past year, he has received 2 pints of blood almost every week. Which creates the next problem - iron overload. He has been taking a drug called Exjade for close to a year that is supposed to reduce the iron & is now up to 5 tablets of this a day. Not working to this point. He's lucky to keep his red count at 9, platelets are in the 40's, white count not a problem. Iron count is now at 2165 - normal should be around 300-500. This is a major concern to his doctor, because it can cause severe problems to major organs however there seems to be no way to treat this. MDS is not as common as one would think and everyone's case is different. Major key - stay positive. Attitude is everything and more so for the caregiver. Take each day for what it is and be thankful for that.
(I had placed this comment in the 'transfusions' discussion, however this seems to be where the action is!

Welcome kittymom, JA1, poshshorty, and bionicJ,

We're a fun group to be sure...and yes, this is where the ACTION is, especially when Chris is in one of his talkative moods. :)

Just back from the vampire...our last visit before our vacation to Hawaii for two weeks. Lou's hemoglobin is the highest it's been since he was diagnosed with MDS 10.6 - yippee!

Doctor prescribed 120,000 units of Procrit to hopefully get him through the 2 weeks. He's been getting 40,000 twice a week so he'll be just 40,000 units short when we return. Doctor wants to draw blood the day we get back in town and then he'll prescribe what's necessary to get him back on track.

Maybe the relaxing vacation will be just what the doctor ordered.

We'll keep in touch...as I'm taking my laptop with us. Loads of last minute tasks for tomorrow: wash the car, wash the dog, and buy Lou a good hat!

TTFN

Gayle & Lou