Moderator: Steering Committee
- Posts: 76
- Joined: 11 Aug 2011 17:51
I have not posted for quite some time as my MDS, diagnosed in June 2011, was a low risk variant (5q-) and I have been on wait and watch until very recently with no treatment, and so I have been quietly getting on with my life.
However as a result of asking for a referral to another hospital and having a routine bone marrow biopsy carried out, I was told on 25 November 2014 that my MDS, showed I had 15-20% blasts and therefore had now progressed to a high risk (IPSS score of 5) giving me a prognosis of 18 months at best.
I was told that my only curative option was to have a bone marrow transplant and following many weeks of tests to check that I was fit enough to go through the transplant process, and tissue typing of my siblings to find a donor, I have now reached the stage where I am due to start my intense chemotherapy next week to destroy the leukemic blast cells to put me into remission before proceeding to the conditioning chemotherapy prior to the transplant itself. I have been very fortunate in that Nick, my twin brother, has been confirmed as my donor match which should improve my chances of the Stem Cell Transplant being a cure.
All this will take many months and throughout the process, my immune system will be severely compromised and I will be very vulnerable to infections, and so I will either be in isolation in hospital or at home, so it will be very easy for me, and Simon my husband, to become quite cut off from the outside world.
With this in mind, and as a way of keeping in touch with family and friends far and wide, I have set up a blog where I (or Simon on my behalf) can post a daily journal to let everyone know how I am getting on. Previous transplant patients set up similar blogs and I followed their stories and I found their postings incredibly positive, uplifting and informative and it has helped me no end in facing my imminent treatment in forewarning me of what to expect and how to prepare for it.
I will not be able to respond to individual postings but it will be extremely helpful to me to know that there are family, friends and fellow MDS sufferers, out there who care and are willing me to get well. You really can't have too much of it. The Caring Bridge link to the website is: www.caringbridge.org/visit/sarahreakes and I have set it up before being admitted just so that I can see that it is up and running okay and it’s one less thing to worry about once I’m in hospital.
I am booked to go into Bristol Haematology and Oncology Hospital next Tuesday 20 January, but I will have to phone the ward on Monday to check that they have a bed for me. I have prepared an overview to my blog which does give you some idea of what my treatment plan will involve. It will be a case of taking it a day at a time, but I have had the added benefit of insider knowledge from the likes of Jayne Snell and John Watson who have both had Stem Cell Transplants and are doing great two years on, and their knowledge and words of encouragement have been so valuable to me. They also set up Caring Bridge blogs which I followed, and they found the love and support of family and friends key to their recovery, and coping with the isolation and rigours of the treatment.
I look forward to you visiting my blog and I will do my best to post regularly to keep you up to date with my progress.
Love and best wishes to you all.
- Posts: 22
- Joined: 01 Oct 2012 14:08
My very best wishes for your bone marrow transplant. I expect that you will face quite a few challenges and I will be thinking of you a lot. We will all be anxious to hear how you are getting on. Please try to keep up with your blog which will hopefully be cathartic too.
- Posts: 622
- Joined: 01 Dec 2009 21:52
- Location: Essex
We have been in touch and you know that I am wishing you the very best outcomes for your proposed treatment. Having a sibling match is a great comfort and a positive asset for this procedure. This is a road you never thought you would be travelling following your initial diagnosis so I know it has taken a lot of worry and courage to get you to this point.
Hope that your admission on Tuesday goes ahead - you must be all psyched up for it -and that the results start showing soon.
I shall be logging in to your Caringbridge site and keeping my beady eyes on your progress!! I hope also to keep you cheerful with postings from "the outside world".
Good wishes to you
- Posts: 52
- Joined: 15 Apr 2010 16:56
- Location: Stoke Poges, Bucks
I hope your BMT goes well. Please keep us updated and don't forget the Facebook page too, there's a lot of support there. Please let me know if it's OK to put details of your blog on Twitter (MDS@helpforMDS).
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 other Half Marathons, a 10 miler and a Spartan Race!
- Posts: 11
- Joined: 13 Nov 2014 11:30
I just wanted to send best wishes.
- Posts: 76
- Joined: 11 Aug 2011 17:51
Hi, Diana, Chris, Russel & Nigel, & anyone else reading this,
Thank you for responding to my post and your good wishes.
Well, I came home yesterday, 30 January, having completed the first phase of my inpatient treatment to try and put me into remission prior to the transplant itself. It should take approx. four weeks or so, for my blood counts to now get back to normal, with the help of top ups of red cells and platelets as and when I need them, and as I'm now totally neutropenic and am immuno compromised, I am likely to succumb to infections, so I may well have to come into hospital for antibiotic treatment by iv as well.
My blood counts from yesterday were:-
I shall now have to attend hospital three times a week for blood tests, and possibly treatment as outlined above. Also if my temperature reaches 38 degrees and above then I have to phone in and report to the hospital immediately for antibiotic treatment.
My caring bridge blog has been a great success and has helped me no end. The postings of support have been unbelievable. There have been ups and downs during the treatment and I have said it 'as it is' so please bear this in mind if you choose to read it, and understand the stresses and strains I was feeling, especially with the additional responsibility I had of an elderly neighbour in the adjoining room, for whom I seem to become an extended carer. Something I really hadn't bargained on.
As a result I have to confess to now be feeling absolutely exhausted. The days are long anyway, but add into that, the disturbed nights sleep (from my elderly neighbour's visits to the loo), the day starting around 5.00 am and not getting to bed until 10.00 pm and I think you will get the picture. I also did suffer from side effects to the treatment either from the chemo itself, or to the antibiotics administered which again added to my discomfort. Being in a shared room also removed the ability to be able to nap but I'm home in my own bed now, and so so grateful for that.
Russell please feel free to give out my caring bridge to MDS Twitter but I do wish people to understand that it is a private account and needs to be read in that context.
I will try and keep in touch from time to time via this posting and certainly I will be posting a Caring Bridge Journal approx. once a week whilst home, and then daily whilst I'm confined in isolation in Hospital for the Stem Cell Transplant itself which I guess will be approx. six weeks from now, subject to my next BMB confirming I'm in remission. If I'm not then it will be another round of intense chemotherapy. So have to wait and see.
Best wishes to you all.
Love Sarah xx
- Posts: 67
- Joined: 22 May 2013 14:25
All the best. You were so supportive of me when I was diagnosed in 2013. Thank you for that I'm thinking of you,
Life is for living
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