MDS UK

My name is Brian, and I wanted to share my experiences with you all.

Approximately 10 years ago I was diagnosed with Behcets syndrome (an auto-immune disease), and after a period of time I was prescribed Azathioprine to control this. I was to have blood tests every 3 months to assess any changes to my body from the Azathioprine. Due to alot of house moving and changes of GP these were not as regular as they should have been.

In December 2011 I noticed that I was becoming very breathless when doing simple things like walking and putting the washing in the machine. I made an appointment with my GP, he sent me for a blood test. The next day my GP contacted me and advised me to stop taking the Azathioprine for 2 days and have another blood test. Once I had had this blood test I was admitted to my local hospital (on the Isle of Wight) as i was severely anaemic. Whilst I was in hospital, after numerous tests I was given my first blood transfusion. After 3 days I was discharged and had to return to the Haematology Outpatients the following week for further blood tests and my first bone marrow biopsy. I had to have a blood transfusion every week and was told if I had any shivering etc to go straight to my local A & E dept.

On January 3rd I started to feel shivery, so went to my local A & E dept where I was admitted and given intravenous anti-biotics. After one night in hospital I was ready to be discharged and prior to this I had a meeting with my Haematologist. He informed me that the years of taking Azathioprine had damaged my bone marrow and I had MDS with 10-20% blasts. Like many others who have been diagnosed with this I was totally unaware of what MDS was. I spent the weekend trawling the internet for information (some good, but most bad!).

In the meantime I was to have regular blood tests and blood transfusions bi-weekly to top my haemaglobin levels up, my platelet levels stayed at a constant level. I was referred to the Haematology department at Southampton General Hospital, and at my first meeting I was told that I would need a stem cell transplant, unfortunately my 3 siblings were adopted at an early age and a search would have to be done for an unrelated donor. I was given the booklet "Seven steps to transplant" which on reading this I suddenly became very scared. In subsequent meetings with my Consultant in Southampton I was informed that a match had been found for me in Germany, this all seemed very quick.

In early February my Uncle and my Father passed away suddenly which was a big shock to all the family on top of the news about my illness. The day before my Fathers funeral I had my 2nd bone marrow biopsy.

On a Friday in early March following a day when I received 3 units of blood I received a telephone call from my Consultant. My MDS had developed into AML and I would need to be admitted to Southampton General Hospital on the following Monday. This all became too much and I spent most of that evening in floods of tears. "I had CANCER" I couldn't believe this was happening to me.

On the following Monday I was admitted to an Isolation Room at Southampton General, I was extremely scared and as I wasn't due to have my central line fitted until the Thursday, nothing happened. I constantly queried this with the nurses as I was anxious that things had not been explained to me. I started the first round of Chemo on the Thursday, I was lucky that I did not experience many side effects to the chemo. Once I had had the chemo I then started to suffer from infections, including one in my central line, which was removed. After 7 weeks in hospital I was discharged, and spent 5 weeks recovering at home. During this period I was informed that the AML had gone into remission.

On 26th May I was admitted again to Southampton General for my transplant. I was very apprehensive as I knew what it was like in Isolation and was due to have some more chemo. I was taking part in a clinical trial for Clofarabine, and then received my pre-conditioning treatment. Once again I was very lucky and did not suffer greatly from any side effects. I received my donors stem cells on 13th June. It was now a case of waiting for the stem cells to "take". After 15 days post transplant my blood counts started to recover, I was eventually discharged on 8th July. I have twice weekly appointments at Southampton and at the last check my Neutrophil level is 1.6.

There is a long way to go until I am fully fit again, and this past 6 months has been a total whirlwind. Friends and family have been amazed at how well I have been coping, and if I am honest, I still don't believe any of this has happened to me. I am unsure whether the experience has changed me, only time will tell.

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Brian - M, 39yrs. Diagnosed with AML secondary to MDS Jan 2012. Received Unrelated Stem Cell Transplant June 2012. At home recovering.

Hi Brian,

It's getting late, but just suffice to say what an amazing story and thank you for sharing it with us. Janet Snell is currently going through her Stem Cell Transplant treatment - she's just had the transplant itself 12 days ago, and I've been following her blog, as well as her postings on this forum. You may care to read her story as well. She has been absolutely amazing with her positivity and her family and friends have been with her every step of the way.

I'm sure she will find your story uplifting as well.

Here's hoping that you continue to progress well to a full recovery. Do please keep us up-to-date.

With best wishes

Sarah

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Aged 61. Diagnosed with MDS del 5q, June/July 2011 on Wait and Watch regime (quarterly check ups/blood tests with Haematologist). Live in Yatton near Bristol/Clevedon.

Dear Brian

Thank you for sharing your experience with us. I can't believe that the experience won't have changed your outlook on life but I also think you need a lot of time for reflection and recovery before some of these feelings emerge. I hope you have a lot of family/ friends to support you at this difficult time? You have had a ghastly 18 months and had to deal with not only your own diagnosis and illness but also the loss of your father and uncle. The speed at which things have happened must also make it difficult to come to terms with your recent bereavements and fears for your own health. I do hope that, should you need any emotional support, you can find ways of accessing this. Maybe Macmillan would be a good start or your clinical nurse specialist in Southampton?

It is great news that you are now well enough to be recovering at home and that your neutrophils are in such great shape. Keep yourself fit and healthy and away from any nasty infections! I'm sure Jayne will be reading this with interest as she is a few weeks behind you.

What has happened regarding your Behcet's symptoms now that you cannot have the treatment? Were you warned of this particular side-effect of the drug? Presumably not since it seems to have been implicated only when the haematologist gave you your MDS diagnosis? It concerns me that others might be continuing with the drug blissfully unaware that they may be storing up the development of MDS/AML at a later stage - which to me seems more dangerous than the possible effects of Behcet's disease? Surely patients need to be fully informed before agreeing to taking a drug like this over a long period of time?

There may be post-transplant support groups at Southampton too and it may help to meet others in the same position.

Take good care and keep those neuts increasing!

Best wishes

Chris

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Chris. (F) Age 62.MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-monthly.SE Essex

Hi Sarah & Chris,

Many thanks for your replies, I am still making good progress, at the last check my Neutrophils are at 3.2. I have had a slight sore throat but following throat swabs nothing untoward has been found.

I have indeed been following Janet's story, and I find a lot of the stories very uplifting and I hope my story can give people hope.

Chris - With regards to the Behcets syndrome, In laymans terms it is an overactive immune system. I have been told that following my transplant and the introduction of my new immune system I should not feel any symptoms, so fingers crossed.

I will post updates and best wishes to all fellow sufferers.

Brian

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Brian - M, 39yrs. Diagnosed with AML secondary to MDS Jan 2012. Received Unrelated Stem Cell Transplant June 2012. At home recovering.

Hello Brian Chris and Sarah
good to see all are well and welcome Brain ,i know you all know who you are on about when you state janet (a mistake ) but it is Jayne i am having a wobble think that is tempting fate

sure to hear from you all again soon Janet

Hi Brian,
I hope you are recovering well from the transplant. I had one at Southampton nearly 3 years ago and am almost as good as new now! I've got one more Thursday clinic visit and then get promoted to what they nickname the " long term survivors clinic" with Kate. They are wonderful at the General, I couldn't fault them. Kim was my transplant consultant but you see all of them in clinic and they are all super. I have found that if you have a query or worry just phone the transplant office and they will sort you out, although obviously they would get a tad miffed if you did it too often!
Lucy

Hi Brian, Janet, Chris, and Lucy

So pleased Brian you are doing well; sorry that I was the one who referred to Jayne Snell as Janet (it was late at night when I posted so that's my excuse) so sorry Janet to have given you a scare!

Great to hear from Lucy after three years post SCT - fantastic! It is so uplifting to read such positive postings. Keep in touch.

Lovely to hear from you all.

Take Care.

Sarah x

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Aged 61. Diagnosed with MDS del 5q, June/July 2011 on Wait and Watch regime (quarterly check ups/blood tests with Haematologist). Live in Yatton near Bristol/Clevedon.

Dear all,

Many thanks for the messages. I am now day 133 post transplant. I have had a couple of problems with GVHD but nothing too serious. Upon reaching day 100 I had my first chimerism test, the results of which showed I am 94-98% donor. To be honest I was very disappointed with this. I am due to have my "top up" of donor stem cells on 13th November, which is exactly 5 months to the day that i received my transplant.

I only have to see my consultant every 2 weeks now, and have started to enjoy mixing with people again. Last week I went to Wembley to watch the England v San Marino football match. I have also taken part in a couple of part time courses at my local college.

So, apart from the blip with my chimerism test, i am starting to look forward to a new lease of life!

Best wishes to all.

Brian

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Brian - M, 39yrs. Diagnosed with AML secondary to MDS Jan 2012. Received Unrelated Stem Cell Transplant June 2012. At home recovering.

Hi Brian

It's all sounding good and, as I understand it, a "touch of GVHD" is quite a good thing? Hope you are reading Jayne's blog.? She seems to have gone from 100% donor at one point to less. I don't understand how this happens but she is also due to have a top-up from the donor so I guess this is quite common practice and something the transplant team are used to dealing with?

Glad you are out in the world again after your enforced isolation! Maybe Wembley crowds were a step too far?!!

At our recent Essex meeting, I met up with somebody of your age who also had a whirlwind experience from diagnosis of MDS to stem cell transplant in around 3-4 months so maybe you can set up a post stem-cell topic on here and share your experiences?

Hope your next infusion in November goes well and that it helps to boost your transplant.

Best wishes

Chris

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Chris. (F) Age 62.MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-monthly.SE Essex

Hi Brian,
I wouldn't worry too much about your numbers. I checked mine and I was only up to 98/99% in May 2011 having had the transplant in Nov 2009 and they did go up and down a bit. I'm sure the lymphocytes will help push them up. Back up to full strength now as well as 100% immune system. Just go out and enjoy life, which you already seem to be doing. Three years on and it all seems rather surreal now as I feel so well.
Best Wishes
Lucy