HI

[janetstanford]

i have just joined the site
and have been reading some you posts ect, and as i read i feel some what at ease and quietly emotional
as i have never spoken to another person who has mds, and here i am finally able to relate to you all (if only in part with some of you) and i would like to say thank you as relating to you all has made me feel welcome and not alone

and i look forward to learning from and getting to know you all

janet

[chris]

Hi Janet

Welcome to the elite club of MDS patients!
This is the only place where I have found anybody else who has this disease - apart from attending the MDS Patient Support Forums which I would also recommend if you can. Don't know where you live but there's a Forum in Cambridge this Friday. It's such a varied disease with so many sub-groups and severities that even within this Forum there may only be a few people with your particular type.

How did you find out about the Forum and what are your current experiences of having MDS?

I have CMML which seems to be quite a small sub-group. Somebody on the Forum (peppertree) also has it but I can't seem to make contact - it would be so helpful to share experiences - very frustrating when I've finally found somebody in the same MDS boat!

Hope you are well at the moment?

Best wishes
Chris(tine)

[janetstanford]

hi christine
thanks for the message you are the only other person i have had any contact with who also has mds,it really is a moment thankyou for leaving a post.
i came across the site quite by accident some months ago i read an article in the daily mail about prof taylor and i was shocked at the content esp as to how serious and rare the condition is, this really had not been spelled out to me and from there the list of issues i have from how little info i had/have been given and possibly how little the hospital and staff know of mds ,
i then started to play around with the computer and put prof taylors name in google and so much came up exjade,mds vidaza ect ect i was swamped useful man.
but finally i joined the web site as i have been so unsettled this last few months so many questions i want to raise with the doctor but because of his care and treatment i just do not want to insult him ? so to speak ,
i know i need help and support and communication with others like me and you understanding yes thats it
i have issues with low blood production although at first it was all plates white and reds and all those that fight infection infact when first diagnosed i did not have much left of anything , sorry do not know correct mds trem, but the good things is with the sites help a relief ( for the first time feels good )

look forward to hearing from you again,take care
janet

[chris]

Hi Janet

If you need more information about MDS please contact Sophie Wintrich - her e-mail address is on the Forum. She can send you some useful information about MDS which might be helpful to you if you feel you are not getting the information you need from your doctors. Sometimes they simply do not have the time to go into all the details but at the very least he/she should be able to tell you in straightforward terms what particular type of MDS you have and what stage you are at.

Hope that you can get some support. Also look at the omtacts section and see if there is anybody else in the area you live who might be interested in meeting up with other MDS sufferers.

Best wishes

Chris

[janetstanford]

christine
thanks for your post, i have just phoned sophie although a little nervous she soon put me at ease her voice is so calm unlike mine being rather deep and a northern accent!
have you managed to get intouch with the other forum member you had been trying to contact do hope so as it is good to be able to relate to others with the same symptoms ect as yourself !

janet

[david]

Thanks for your good wishes Janet. I agree transfusions can be wearing but they do keep us going.

I used to go armed with newspapers, magazines, puzzles and books. Handling newspapers hooked up is difficult and waving my arms about kept turning off the machine and by the time I got to magazines etc was running out of patience. It did give me the excuse to treat myself to an iPad though which helps to pass the time.

But for me the hardest part remains - how long can you sit !

Best wishes - David

[lynnee]

Hi Christine and Janet, I've have just joined as well and wanted to thank you for the info regarding Sophie; I have loads of questions even after all this time. I don't think my haemotologist really wants to discuss it because he isn't sure himself eg my gps have often told me although my white cells are there in quantity there is the possibility they are functioning properly which is why this year I have been constantly picking up bugs; my haemotologist pooh/poohed this as there's no evidence to suggest it! You do get mixed messages a lot of the time. I was diagnosed 10 yrs ago now and my red blood cells are now maintained by Aranesp injections but just recently it appears its not working so well. I consider myself very fortunate compared to the original prognosis I was given but count every day as a blessing.. its a long time to be on watch and wait regime with hospital and each visit every 2months leaves you feeling drained. Like you Janet I feel relieved to be able to discuss things with other people who have the same condition. i tried to join a while ago but couldn't seem to get logged on for some reason..but hooray. I've done it! I think this is a great idea and hope to be able to go to one of the Forums next year.
Take care both of you. I hope this posting reaches you. Best wishes Lynne

[janetstanford]

hi lynnee
and welcome good to get your post
from what i read we seem to have similar issue blood related mds, i am the same as you so little info watch and wait treatment although your bloods are maintained with drugs ??? never heard of this i have had hormone injections but not this one (not that i know what your treatment is ) ,mind there are many things i have not heard of with regards mds. but from reading other posts i know how little i and those around me know
but the one statemant you made which gave me hope was ten years, you have lived with this ,as so many of the posts state people told 3 years ect !!!! hope for us all

would it be possible to get intouch with you by pm so we coud talk discuss issues as i believe it would help us both ( me certainly to communicate with somebody who knows how i feel )

look forward to hearing from you
janet

[chris]

Hi Janet

I had not realised that you had had chemotherapy and following this your need for transfusions seems to have improved? (From your post to David re his Azacitidine treatment and its success). Do you know what sort of chemotherapy it was and what drug was used? What side-effects did you have? I am interested as it has been tentatively suggested to me as an option at some point. Are you any the wiser on what type of MDS you have?

Hope you are keeping well?

Chris

[david]

Hi Janet, thanks for your good wishes.

I have not had any problems with iron overload though I understand treatment can be demanding if you have to have nightly infusions. I really don't know my way round the forum but I've just come across another post from you saying that you are on medication that seems to be working - hope it continues and it is not too difficult for you.

I'm also northern - West Yorkshire - and there seem to be several of us all with different varieties of MDS. I only really know 2 of them and it's nice to meet them and swap notes when our paths cross from time to time.

With regard to blood transfusions we all seem to need them at different levels - mine were prescribed for when I got much below 11 and I would be really struggling at 9 though I was once sat next to someone at <8 who was still playing golf. Even now when my last count was 13 breathlessness is never too far away and I have only one pace which is slow and can only do light physical tasks for short times.

Not always easy but the main thing is to keep our spirits up and get on with life - I've told my GP not to tell me that anything can be bad for my health - so we are well stocked up with Christmas cheer and to borrow from Frank Sinatra when asked what he wanted for Christmas replied - another!

Have a good Christmas and Happy New Year