Dear Andy,
My next appointment at Kings is end of June, unless I go on the drugs trial. Where do you live?
chris.

Hello everyone, my name is sue, I have been reading all your posts for the past six months, I live in Kent, uk, and my mum was diagnosed with mds in September 2007. She was just coming up for her 70th birthday in the march, was feeling tired all the time and blood tests kept coming back with low plateletts, eventually a bone marrow test revealled mds with very abnormal chromosomes. Her heamotologist at darenth valley hospital referred her to kings college in London, where they monitored her blood levels on a three month basis, eveything remained stable and they eventually said they would see her at six month intervals. Unfortunately in December last year she felt unwell, we thought it was a flu like thing, but a blood test was done and the doc sent her straight to hospital. Lots of blood transfusions and plateletts later she came home new years eve, but felt so unwell the following day was taken back in. Over the next two weeks followed more transfusions and plateletts, another bone marrow test revealed it had turned to acute myloid lukemia, her blood level dropped to 7 and plateletts were at 3, sadly I lost my beautiful mum on 19 January this year. It turned to lukemia so quickly. I wish now we had thought more about asking for the trial drugs at kings. We were always advised on the watch and wait way of doing things.

I have found it very comforting reading all your posts and wish you all well.

Love to you all

sue x

Ah, Sue, I'm so sorry to hear about your mum. The disease must have progressed very rapidly. Was she on meds of any kind? MDS is an umbrella group of diseases, and each of us has a different set of problems to deal with. It might have been too late for her to go on any trials, you know. Drugs are being tested all the time, & many of us wonder which ones may be of benefit. It's not one-size-fits-all.

I wish you had let us go thru this with you. We may not have changed the outcome one whit, but we do support one another, & I'm sure you could have used some TLC from our little family. Your mum & I are apparently only a couple months apart in age.

Thank you for letting us know, and write whenever you feel like it.

Sue, My heart goes out to you for two reasons...I lost my mom in Jan. and my husband has MDS and we are waithing for the results of his bone marrow test to see if he has gone into luekemia, and I'm really scared. I have noticed the last few days he is tired and short of breath. We still have 9 more days to wait...Thinking of you...Janet

Hello to everyone. Welcome to all the new members. It has been a few days since i posted. I have just been enjoying the warm weather here in Georgia although the pollen is creating havoc with my allergies. Sorry that our little group seems to be growing but it is comforting to share with others who may be experiencing some of the same things. My next infusion is for Tuesday afternoon. Hoping it helps as I am feeling very tired. A day out with the family takes it toll the next day so I am just relaxing and sofa bound today.

Fundraiser, thinks for the suggestions on possibly obtaining injections sooner. Will have to look into that on Tuesday.

Hope everyone is well. Glad to se that Chris and Andy have managed to connect locally.

LaDawn

Dear Sue,
You say you live in Kent, but your profile says USA. Contradiction somewhere.
Sorry to hear about your Mother. I have had AML for the last 8 months, but I am lucky enough to be holding my own on the Oral Chemo recommended by Kings College Hospital in London, who are the centre of excellence for myloid conditions in the UK. So your Mother was in good hands. With MDS/AML we are all different, and we react differently to infections, and these are our great enemies. Not too sure where Darenth Vally Hospital is, and you dont tell me where in Kent you live, would be interested to know.
With best regards
Christopher otherwise known as the difficult old Brit or chrisjb.

Dear Janet,
Don't be too pessimistic. We are all short of breasth at times, we are all tired, these two things seem to be common to everyone. There are chemo treatments that can help, and whatever the prognosis, the Doctors are rareley right about how long we will live. The important things to find out, is which reisk band he is in, and know what are his blood counts and balsts. You will find these out, and please let us know.
We are all thinking of you, as we worry about everyone on this Discussion group, the MOST ACTIVE FOR MDS. I have already crossed into Acute Myloid Leukaemia, that was 8 months ago, but I am still batting on, working,l enjoying life, I drive 15,000 miles a year, do two days a week in London 70 miles away, and travel frequently. I am no superman, but I am very very determined, and therein, I believe lies the secret.
Good luck to you both.
Post a Photie if you can!!!
Chrisjb.

Dear Janet,
I forgot to say, that Gardening is one of the worst things to do, becuase of soil carried bacteria, which can easily cause infections in MDS/AML patients.
Tell the old man to look at the garden, enjoy it and pay someone else to do it, or he will not live long enough to enjoy it for long.
chrisjb.

Hey all,

I had not heard of the bacteria problems in gardening. Might be none alive here in TX LOL. I don't do muhc in the gardening area but do get out and mow. I've always wore a mask. As for the breating and fatigue, I can get out of breath moving around in my chair It varies. Some times I can walk out to the road, about several hundred feet and back with only minor issues and other times I get really short of breath just moving around the house. I walked about 50 ft from the car into a shop the other day and had to lean on the wall for a few minutes before I could say much.

Tomorrow is the next BMT and the start of chemo week. I'm always optimistic but naturally like anyone don't like the potentials of the BMT results. Also don't like the impact, which like I've said for me is mostly added fatigue in big amounts on top of what is already there) of the coming two weeks.

Hang in there and let us know where things stand.

Mike

Just a question for all. It seems a lot of the posts tell of you all being on shots vs some form of chemo like the dacogen that I'm on. Are the shots based on a lower level of MDS though I see also the use of transfusions as well.

How many are on some form of chemo and what kind vs what stage or level?

Thanks
Mike

Hi everyone, it's nice to talk to you all. I have updated my profile, I live in Dartford, Kent, and have added a picture of mum and me. My mum was diagnosed with mds abnormal chromosome 7 and cytogenetic abnormalities. Chris I'm sure I have seen you at kings before on one of mums appointments. Mum was offered the trial drug azacytidine, but after discussions with prof mufti at kings about possible side effects and because she was feeling so well decided to wait. Her last appointment at kings was on 5 October last year when everything had remained the same, counts were 10, not sure what White cells were, but plateletts were in the 80's. Her next appointment was at the end of jan this year, which unfortunately she did not make. So from 5 october to 14 December her count dropped rapidly. When she was taken in to our local hospital her count had dropped to 7, plateletts were 23 and her White count was under 2, which meant she was neutropenic (something which we had never heard of). The doctors let her home on new years eve, after days of transfusions, she had medication to prevent viral and bacterial infections twice a day. Mum must of felt so ill because on new years day she was crying and said she wanted to go back to hospital because she wasn't right. We took her back and her blood had dropped to 6, plateletts were at 10 and White cell were rock bottom. She became covered in bruising and started getting very breathless and had absolutely no appetite. It was awful watching my beautiful mum and my best friend fade away, but she was so strong for me. Myself, my husband and three daughters were with her when she went and it was so peaceful.

Sorry if it upsets anyone reading this. Birdmom you are right there are so many different types of mds, I think mum was in the high risk group. Janet in so sorry for the loss of your mum, I know how hard it is. You must stay positive for your husband.

I'm glad I found this group and I wish you all well.

Love to you all

sue x

Hi everyone, it's nice to talk to you all. I have updated my profile, I live in Dartford, Kent, and have added a picture of mum and me. My mum was diagnosed with mds abnormal chromosome 7 and cytogenetic abnormalities. Chris I'm sure I have seen you at kings before on one of mums appointments. Mum was offered the trial drug azacytidine, but after discussions with prof mufti at kings about possible side effects and because she was feeling so well decided to wait. Her last appointment at kings was on 5 October last year when everything had remained the same, counts were 10, not sure what White cells were, but plateletts were in the 80's. Her next appointment was at the end of jan this year, which unfortunately she did not make. So from 5 october to 14 December her count dropped rapidly. When she was taken in to our local hospital her count had dropped to 7, plateletts were 23 and her White count was under 2, which meant she was neutropenic (something which we had never heard of). The doctors let her home on new years eve, after days of transfusions, she had medication to prevent viral and bacterial infections twice a day. Mum must of felt so ill because on new years day she was crying and said she wanted to go back to hospital because she wasn't right. We took her back and her blood had dropped to 6, plateletts were at 10 and White cell were rock bottom. She became covered in bruising and started getting very breathless and had absolutely no appetite. It was awful watching my beautiful mum and my best friend fade away, but she was so strong for me. Myself, my husband and three daughters were with her when she went and it was so peaceful.

Sorry if it upsets anyone reading this. Birdmom you are right there are so many different types of mds, I think mum was in the high risk group. Janet in so sorry for the loss of your mum, I know how hard it is. You must stay positive for your husband.

I'm glad I found this group and I wish you all well.

Love to you all

sue x

Dear Sue,

I wish I had been offered Azactidine, which NICE has refused to sanction for the NHS as it will only help 700 people and costs 45,000 per patient per year.

I will think of you every time I come round the M25, towards the bridge. I have a daughter with a house in Surrey Quays, and I look after it for her as she is abroad in Dubai.

Years ago we lived in Romford, but I am in fact a Northerner, from Yorkshire (we are blunt people) but I have lived all over the world, and last lived in Yorkshire 20 years ago.

Keep in touch.
Chris

Dear Mike,

Shots seems to be an American word, and I must admit that I often wonder what it actually mean.

I have blood transfusions whenever my Hemoglobin gets down to about 8.5, and two units of blood will bring it back to above 10.5.

Yes I am on Oral Chemo, Hydroxicarbamide.

My risk grouping was originally Intermediate 2, but now I am deemed to have crossed the rubicon into Acute Myloid Dysplasia, though I do not feel any different to the way I felt 20 months ago when first diagnosed. My Haemoa generally say "You are doing OK" in other words I am reasonably stable, but I have blood tests every 3 weeks and a consultation with the Haemo, who then considers whether to increase, reduce or leave the same the amount of Oral Chemo I take daily. Been on this regime for 8 months.
Where do you live?
Regards
Chrisjb.

Hello again folks

sorry I have been AWOL but I have been transfering my post at work so extra busy. Still at least we have expanded our numbers (as you have mentioned it would be better if no one had this condition but it is nice more people have found us) it is terribly sad to hear from those of you that have lost love ones to this evil condition. You have my best wishes and my sympathies.
I am back to the vampires tomorrow so will see how things are (apart from a cold and a sinus infection I feel ok for now so hoping for reasonable results).

To save anyone looking back: I am Ally I am a 38 year old male with MDS (del 20q) in the intermediate 1 category. I was given an average life expectancy of 3 years 2 and a half years ago. This has been thrown into doubt recently due to findings from a German study into MDS in those under 50 which suggest average life expectancies much longer than previous thought.

I am firmly in Chris's camp in relation to the accuracy of such predictions and judging by his example will also keep fighting in order to prove everyone wrong.

Anyway I hope this finds you all as well as possible and as stubborn and resistant as Chris.

Best wishes

Ally