Please use this folder to say a brief hello

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sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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Please use this folder to say a brief hello

Post by sophie » 09 Mar 2011 12:24

Dear forum users - please post a quick hello in this folder if you do not wish to post a full introduction in "My experiences".
This will will make the whole online forum a little less formal and hopefully people will get to know each other a little better. ;)
It can be MDS related, or maybe just something about yourself.
For specific MDS issues, please carry on using the various relevant folders - as those messages are an invaluable source of information for all MDS patients and relatives.

Thank you.
:) :geek:
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
man1city
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Joined: 19 Jul 2010 21:09
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Re: Please use this folder to say a brief hello

Post by man1city » 09 Mar 2011 16:58

This is a brief hello, particularly for Sophie in the hope that I am becoming a little bit more computer literate. I am very grateful that Addenbrooke's hospital staff have provided me with a "To Whom It May Concern" letter for me to take on my forthcoming foreign holiday. It explains what should be done for me, in the light of my MDS, if I should become ill abroad with a serious infection. In addition, I have been provided with 2 broad-spectrum antibiotics for use in emergency. I am greatly re-assured.
Now, let me have another try at posting this. Best wishes to all. It's a lovely spring day in Cambridge.

John Heywood
Age 79. Diagnosed 2008 as RAEB 2 but now am CMML. Wonderfully cared for at Addenbrookes Cambridge, a centre of excellence for MDS treatment/research. Blood transfusions every 6 weeks, clinic every 12 weeks. Anglia MDS Patient Support Group member.
janetstanford
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Re: Please use this folder to say a brief hello

Post by janetstanford » 09 Mar 2011 17:05

hi john
welcome ...good to see your post and pleased to see so many new posts from new members this last couple of days

take care janet
chris
Posts: 620
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Please use this folder to say a brief hello

Post by chris » 22 Mar 2011 11:03

Hi John

Did you go to the Cambridge Forum? Are you the person who had had some acupuncture? And you had recently had a bout of cellulitis on your foot? (If so, hope it's better!).

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
man1city
Posts: 6
Joined: 19 Jul 2010 21:09
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Re: Please use this folder to say a brief hello

Post by man1city » 29 Mar 2011 17:47

Hi Chris

Yes that was me. Good to hear from you. I continue with acupuncture about once a month. I have no idea whether it really helps but I shall keep it up. My acupuncturist is very reassuring and I like the aroma of the Massa - don't know if that's how you spell it but I think it's wormwood. My Addenbrooke's consultants know I have acupuncture and don't mind. General consensus seems to be: if you think it helps, no problem! Unfortunately, my cellulitis returned suddenly and virulently in Jan. I went straight to A & E and was dealt with very speedily and effectively. I had antibiotics intravenously for a while and was an inpatient for 8 days. What a boon it is to be so near to Addenbrooke's. My stay there was of the highest order in every respect. Since discharge, I have looked after my foot very carefully indeed in order to try and prevent a return of the infection since my GP assures me the infection can catch you unawares, as it did for me in Jan. However, I am pleased to say that, that since my diagnosis of MDS RAEB2 mid year 2008, I have never felt better. We were due to go to Marrakech on holiday this month but my GP advised against it. We were able to get reimbursed for almost the total cost by our travel insurance firm and we went to Edinburgh instead! We thoroughly enjoyed ourselves. We shall avoid hot countries for holidays in future - a small price to pay!

Thanks for saying hello and best wishes to you. I am very much a learner with this technology so I hope I press the right button again! How wonderful to be able to continue to enjoy the spring, the blossom, the birds.

John
Age 79. Diagnosed 2008 as RAEB 2 but now am CMML. Wonderfully cared for at Addenbrookes Cambridge, a centre of excellence for MDS treatment/research. Blood transfusions every 6 weeks, clinic every 12 weeks. Anglia MDS Patient Support Group member.
chris
Posts: 620
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Please use this folder to say a brief hello

Post by chris » 30 Mar 2011 13:16

Hi John
Ah, my memory is still working then!! Well done on mastering the technology and posting on here. I keep meaning to check out a medically qualified acupuncturist but nearest one is quite a distance! Will think about some reflexology as that seems less invasive - acupuncture without the needles!!!

I was so sorry to hear you had had a serious bout of cellulitis. It is really painful, isn't it? I have had it about 8 times since 2002 - pre- my MDS diagnosis in 2009 so I suspect that I had low white counts for all that time. Apparently celulitis is one of the most frequently occurring infections in patients with profound neutropenia (low neutrophil count). I noticed that I got it following even the tiniest scratch or breaking of the skin on my lower leg or foot so now I try to avoid that! I always carry antibacterial wipes and clean any slight abrasion immediately, followed by covering it with antibacterial/ antiseptic cream I use a tea tree oil one but I'm sure any proprietary cream would help. Pretty much all my attacks were in the summer so I am very careful about bare legs and sandalled feet. Maybe that's why men wear socks and sandals?!

Hmmm! I think that going to exotic places with a potential for unfamiliar bacteria is not such a great idea for somebody with low white cells!! I am also on the UK holiday kic but, having never been to so many lovely places, I am feeling quite pleased with myself for supporting the UK economy!!!

The Spring weather is certainly a boost. Glad you are enjoying it. Take care.
Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Nick
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Joined: 13 Apr 2011 17:01
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Re: Please use this folder to say a brief hello

Post by Nick » 13 Apr 2011 20:46

Hello all,

My name's Nick and I'm a 48 y/o male living in East Sussex. I was diagnosed with MDS/RA/RCMD in July 2008 after getting a blood test at my wife's insistence as I was bruising like a peach, getting nose bleeds and felt knackered all the time. Being a typical bloke I put off three appointments as I was 'too busy'.

I'm being treated at Kings College hospital and Conquest hospital and was put on drug therapy (Eprex and GCSF) 9 months ago after fatigue and continuous infections started to impact on my quality of life. I will (probably) be having a BMT once the jabs stop working - I'm fortunate to have a sibling BM donor (sister) who has quoted me very reasonable rates for a couple of pints of stem cells!

It's been really useful to read the accounts of those of you who have already been through BMT and it's done a lot to demystify things for me in terms of timescales and what to expect.

Is there anybody else currently using (or who has used) Erythropoetin and GCSF? I'd like to hear if you had side effects with the GCSF and how long the therapy was effective for.

I've just noticed that the heading for this folder says to say a 'brief hello' so I'll stop now.

Regards all, Nick.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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Re: Please use this folder to say a brief hello

Post by sophie » 14 Apr 2011 14:39

Hi Nick,

i also posted your Epo/GCSF question in the Comments and Issues about MDS folder - as people are more likely to see it there.
Also that way we can concentrate all the responses on the EPO/GSCF subject in the same folder, under that specific header. Saves people having to fish all over different folders for the info.
And don't ever worry about the length of your posts :)
The more info the better, as it helps other readers.
If you do want to write a much more detailed description of your situation, feel free to leave a message in "My experiences".

Hope you get lots or replies from people
Welcome to the online discussion group 8-)
sophie :geek:
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: Please use this folder to say a brief hello

Post by Jayne » 17 May 2011 15:35

Hi - just a quick "hi" to introduce myself.

I am Jayne, I am 41 and married with 2 children age 13 and 15 and was diagnosed with MDS RCMD in February. I actually went to hospital with a different illness, trigeminal neuralgia (usually affects 60+ year olds - I do wonder what age the inside of my body must be!!!!), but I reacted to the tablets given so they did a blood test. I was told by my neurologist that they had some big concerns over my blood and I was being referred to a heamatologist. I never in a million years expected something like this.

I have since seen Prof Bowen at Leeds (I live near York) and have been told I can have a transplant whenever I want (??) but as my quality of life at the moment is not too hindered (just a lot tired by the end of the day and stairs dont really agree with me, neither does running in egg and spoon races etc) then maybe the risks are not quite worth it yet. I do agree. We are currently waiting the results to find out if my brother is a suitable donor.

I go on holiday to Cornwall in a couple of weeks and do wonder if I am going to be able to walk the cliffs to Bedruthan Steps and bodyboard with my kids. The first is highly unlikely and I probably wont even try, the second I will definitely try and hopefully have a lot of fun in the sea.......if only I can keep my breath.

I would love to hear from all of you, please let me know if you live in the Yorkshire area. There seem to be meetings set up but not 'up North' so it would be great if we could maybe try and organise something.

Jayne x
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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These messages have been viewed 308 times already !!

Post by sophie » 08 Jun 2011 13:52

Hello all,
I am just amazed - these few messages have been read 308 times already - but only 8 people have posted something in this folder to say hello.
It seems it is helping some people somewhere.
It would be even better if the readers would say hello as well - don't be shy - others would really like to get in touch with you.
Thanks
Sophie
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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