Hi to you all x

[abbeyfarm]

Dear Chris Jayne and Janet and all ..... Thankyou for your messages of support ... Your so good ... I'm hoping now my little ones- are back at school I will have more time to keep in touch like you do !!!! So thank you again !!!! I had my latest check-up Monday at MRI and my years trend with my bloods have changed and all blood counts have dropped since last Monday ....Neutrophils are 0.76 (down from 0 .83),Platelets 155 (down from 210 ),white blood count 0.8 (down from 1.2.) and Haemoglobin low at 8.1 (down from 9.4) so went in yesterday for my first blood transfusion xxx was so emotional as felt everything was going so well ... So today I feel very fragile .... Emotionally . Also told at the hospital that as MDS was cancer that I could apply for an exception certificate so all medicines are free !!! That upset me too xx hadn't really realised that or maybe I've just been burying my head in the sand ????? So all in all a tough couple of days xxxx my lovely friend Alison is having a coffee morning today to raise funds for the MDS patient support group ... So let's hope she raises lots to support the marvellous work they do !!! Are you all going to go to the patient and caters support forum on the 28 th September ???? Would be lovely to meet up in person xxxxxx lots of love Fiona xxxx

[chris]

Dear Fiona

Sorry for not replying sooner but away on hols as you kow! Now back and inundated with veg from the allotment to deal with - not to mention the weeds!!

So sorry to hear about the drop in blood counts and your subsequent need for transfusions. It must be very upsetting for you. Is this expected as part of the ATG treatment i.e. are the counts supposed to get worse before they get better or does this mean that the treatment has not worked for you? What are the plans now?

Quite understand your shock at the categorisation of a blood cancer, too. I rather foolishly thought that a syndrome was a somewhat less serious thing and there are still debates in some circles about the classification of MDS as a cancer. Thinking about it now, I was prescribed some antibiotics and mouthwash very early on by my consultant and was puzzled as to why I hadn't been asked to pay for them and now I think about it , when I asked about this, the hospital pharmacist at the time rather sheepishly said " Oh no, you get these free!" and I didn't think to ask why!!!

Yes, I am definitiely going to the London Forum so it would be wonderful to meet up with you there. Not long to go now.

Best wishes

Chris

[david j]

Hi All

Just a quickie.

I will be attending the London forum on the 28th.

Regards

David Jacobs

[abbeyfarm]

Hi chris and all xxxx yes looking forward to meeting everyone at London ... Think going to go done the day before to try not to be too tired out by everything as looking forward to the conference and learning more about MDS. A long journey but hopefully it will be worth it as I'm really looking forward to it too xxxx went to the hospital yesterday and my Cell levels were much as last week if not a bit lower .,. Apart from heamoglobin which was a bit higher due to the transfusion last week x but the consultants registrar
Said it has been 7 weeks since the ATG infusion so another 6 weeks for the cells to go up to see if the infusion has been successful ! I just feel so frustrated and scared about the treatment working now xxx everything was so positive xxx just need to get over it and stop doing so much keep eating healthily ... And be strong and positive xxxx one of my friends is going to give me some recipies to boost my immune system !!! And another friend has suggested she send me some liver and spiniach recipies to boost iron !!!! My consultants registrar has just rang to say my cyclosporin level is too low so has upped my dose to 175mg 2x per day !!! Think that is making my aches and pains and the sickly feeling I've developed !!! Looking forward to next week xxxx your holiday sounds fab Chris xxxx lots of fresh fruit and veg sound very healthy !!!!! See you next week xxx lots of love Fiona xxxx

[chris]

Dear Fiona

Well it sounds like you will be playing a waiting game for the next 6 weeks or so to see if the treatment has worked so we will all be hoping that it has. It's a shame that people are so kind and well-intentioned but just don't understand that the anaemia in MDS cannot be treated by eating more iron-rich food!!! Nor does there seem to be anything dietary which boosts white cells. If only!!! However, I still think that keeping as healthy as we can is going to be better for our bodies to help deal with the problems that MDS can cause. Sorry,too, that the drugs are making you achey and queasy. Hopefully, it will be tailed off again at some point?

Sounds like a good idea to come down the night before. I think you can get quite cheap hotel deals in London.

David - so glad you are coming up too. We can have a little Forum get-together!!!

Take care all.

Chris

[janetstanford]

Hello Abbey
Sorry to hear about the low blood counts i know just how this can make you feel and the issues it causes health wise ...i am sure the waiting will make you stressed but we are all rooting for you and i hope the next 6wks will go smoothly and i have my fingers crossed that the treatment will work
Chris Abbey David hope you all meet and enjoy the london meeting faces to names
Chris next time you go to Northumberland let me know and if your able and willing we could meet far easier for me to get there than London ect 2O mins by car glad to here the veg crop is huge yummy home grown and you will soon be making christmas cake and pudding yes it has almost been a year
Take care all hear from you all soon i am sure Janet

[Jayne]

Hi Fiona, well it has been a while since I have posted on here and thought it was about time I did! I think you are coping amazinglywell with your illness, it seems that you are constantly having things thrown at you and yet you sound quite positive, which REALLY is a good thing!
I think in the end, the clarification of MDS as a cancer is a good thing. It certainly helps with prescription costs! You do have to send off a form and you get something a bit like a credit card back, I got my form from my GP. I wouldn't worry too much about the jargon, I suppose the illness is what it is. As far as I am concerned as long as I am getting the best treatment, that is my main concern.
You will soon find you will have plenty of iron if you are having blood transfusions! Like Christine says, the shortage of anaemia we have can not be treated by food, which is a shame.....mind you I'm not too keen on a lot of the foods that have iron in them. I am considered quite rusty now and I think eventually I will have to have some iron taken away eventually.
Anyway, you are doing amazing.....I had side effects with cyclosporin that affected my hands and feet and their temperature, my hands also shake a bit now, but considering all the drugs I take I'm not surprised!
Anyway, take care of you...keep in touch with me by text like you have been doing and
LOADS OF LOVE, HUGS AND POSITIVITY WINGING IT'S WAY TO YOU!!!!
Jayne x

[abbeyfarm]

Hi Everyone ..... Especially Chris ..... Lovely to you meet you in London !!! And everyone else I met in London ... The day was great ... Just seemed to pass so quickly and would have had loved longer to chat and network ... Lovely to meet Gwyn and Claudia too xxxxx Sorry not to message sooner but had one of those weeks xxxx cells were all lower monday so had an injection in my tummy to boost my neutrophils and then had blood test wednesday to cross match blood for second blood transfusion on thursday xxxx blood now topped up to max xxxx whilst i was in having my transfusion was told i had had a virus I've developed from being on the medication .... Apparently everyone has it in our body but the medicine has started it off !!!!! Not caught it off anyone and can't pass it on to anyone !!!! This week been hard here xxx seem to been at the hospital everyday and Andy working till 9 every night on a project at work ... And my friend Lisa ( She was my lovely friend I met in hospital ) she died on wednesday xxxx she's only 30 xxxx just so hard to take in news like that xxx If anyone would like to sponsor my friend Phil he is doing the Cardiff half marathon to raise money for MDS patient support group next Sunday ... He's on the MDS fundraising page .... There is a virgin just giving link on there .... He raised over £4000 already ..... For our fantastic cause xxxx I'm definitely feeling a little better today xxx think all my boosters have helped xxx back on Monday to have blood tests again !!!!! But they not too hopeful about them last week xx so thinking strong and Positive they will have all done a u turn !!!!! Xxxx lots of love Fiona xxxxx

[chris]

Hi Fiona

It was great to see you and Andy at the London meeting and I hope you felt it was worth the journey? I love meeting people who have been on the Discussion Forum as they already feel like old friends! I always wish there was more time for just chatting - maybe they ought to make the whole day just the lunch break!!!

So sorry to hear about your friend, Lisa. It is always sad to hear when young people die.

You have been having a bit of a time of it since the Forum? I am really ,really hoping that your blood test results today are improved - though I suppose with the white cell stimulant injections and transfusion, it must be hard to know whether the ATG has worked or not? If not, what is the next plan for treatment? Are you waiting for news of a donor for stem cell transplant?

Take care

Chris

[GAVIN1976]

Hi Fiona...I am new to this forum having being diagnosed with Hypoplastic MDS with Monosomy 7 in Oct, so I read all these posts with interest.

Like many of you say, it is very hard to get your head round this when first diagnosed. My diagnosis followed on from an opticians app, there they noticed haemorraging behind eyes, sent me to hospital to be checked where blood tests done, bone marrow biospy done and diagnosis made.

You read so many varying stories on the internet, some positive, some negative but as early days I am trying to find out as much as poss. I have been told I need haemopoetic stem cell transplant, but the real prob seems to be the monosomy 7 so still waiting to hear re that.

Latest bloods were, platlets 89 , Haemoglobin 9.4 , WBC 1.4 , neutrophils 0.39

I will keep checking back on this forum and see what people are up to and will update my situation as and when I hear anything.