MY STORY AT LAST!!

Please post here your experiences of MDS as a patient, carer, family or friend

Moderator: Steering Committee

John Watson
Posts: 11
Joined: 12 Jan 2009 10:12
Contact:

MY STORY AT LAST!!

Post by John Watson » 06 Mar 2010 17:23

Having read so many stories over the past few months and gained a great insight into MDS I thought I had better make an effort and post my experience!I was diagnosed with RCMD-RS in March 2008, at the age of 53, after a nasty bout of pneumonia which refused to clear. I had been anaemic, it appears, since I had undergone spinal fusion surgery in 2005! The diagnosis was a huge shock as I had been an International track and field athlete and.... surely too fit to be struck down with this condition!! HA HA!

The diagnosis was communicated very professionally and with great empathy by my consultant Dr Malcolm Hamilton at The Royal Devon and Exeter Hospital (There is a great haematology unit there, well supported by Exeter Leukaemia Fund, a charity which fund both a Counsellor and specialist nurses). My wife and daughter were present and counselling was offered to both myself and any member of the family, which we have taken advantage of.

At the time I was diagnosed I was very busy Lecturing in outdoor education and mentoring staff at a Further/Higher Education College. In view of the infection risk (my students tended to do work placements in all sorts of exotic places around the world!) it was suggested I should apply for ill-health retiremet, this was accepted and... bang I finished in June 2008!
Without the pressures and stress of the job I have, touch wood, managed to keep healthy, walking twice a day for 45mins or so and still managing to surf regularly.. well from May to November (I use disposable contact lenses to reduce infection risk, still raised eyebrows from the medics though!).

My Hb hovers around 9.1 - 9.9, white count 1.9 - 2.4, neutrophils 0.4 - 0.8 (platelets have always been fine at 300+). Had my first 'treatment' two weeks ago when my neutrophil count dropped below 5, a GCSF injection has appeared to have worked, bringing the count up to 0.7 again. Fingers crossed it is not a sign of progression! although I am lucky enough to have 2 of my siblings match for transplant.

Good luck to us all in our battle with this tricky condition,

John



56yrs, diagnosed 2008 MDS - RCMD, neutropenia, anaemia and platelet clotting problem (aggregation). Currently taking Aranesp EPO weekly.
nigem
Posts: 13
Joined: 04 Jun 2009 15:11
Contact:

Re: MY STORY AT LAST!!

Post by nigem » 08 Mar 2010 22:05

John, I was interested to read of your experiences. I have CMML and have been treated for six months now with a possibility of a bone marrow transplant in May.I have had the experience of injecting myself with GCSF quite a few times now as my neutrophils seem to like dropping to low levels due to chemo. Although not a pleasant experience at first I now have the hang of it. Platelets tend to be 'ok' (30 to 50 range) but I have had two transfusions since Sept 2009 when they dropped to v. low levels. Haemoglobin has alwaqys been really good (currentyly 13.3 - in normal range).
The chemo I am having once a month is reasonably gentle on the body and is helping my blast (cancerous) cells to drop (down from 14% to 9% in 3 months). They need to be 5% or less for the transplant to go ahead.
I too have been working at an FE college and in my 50's and are considering retirement on ill health grounds - which is where I hope you can give me some advice! I am in the Teachers Pension Scheme (TPS) as I guess you were.
How long did it take? How did you put a case together? Any key bits of advice?
Thanks!
John Watson
Posts: 11
Joined: 12 Jan 2009 10:12
Contact:

Re: MY STORY AT LAST!!

Post by John Watson » 09 Mar 2010 12:36

Hi NigelGood to hear from you, thanks for the GCSF info and fingers crossed for May - hope the chemo works to reduce your blast count!
Where to start!! I worked with the HR Department at the college which made contact with the local authority occupational health department, who then called me in for assessment. The college completed the necessary ill-health forms (from TPS website), they arranged and paid for reports from my Haematologist and GP (I also obtained a supporting letter from the counsellor), this report and correspondence was then sent to occupational health for their final report to be attached. If you are a member of a Union, they may have specialist support available.
Your consultant's letter needs to stress that your condition is permanent and that you are at immuno-compromised and at risk of infection when working with students! To add complication there are two retirement categories (see TPS site).
The information took a long time to collate (working with occupational health, I had reduced to a 0.8 post for a year before retirement), but the actual TP retirement decision was made in a week!
If you need any more information, please let me know,
Regards, John
56yrs, diagnosed 2008 MDS - RCMD, neutropenia, anaemia and platelet clotting problem (aggregation). Currently taking Aranesp EPO weekly.
chris
Posts: 644
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: MY STORY AT LAST!!

Post by chris » 21 Mar 2012 12:24

Dear John

I noticed from your posts to Jayne that you are due to start chemo next Monday in preparation for your own stem cell transplant.

I just wanted to wish you well and hope that you fare as well as Jayne has in her first chemo cycle.

Are you having the stem cell transplant done in the Royal Devon and Exeter hospital or is there another specialist centre for this in the South West?

Hope you are keeping well and feeling well-prepared mentally and physically for your transplant.

Best wishes

Chris Dugmore
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
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: MY STORY AT LAST!!

Post by Jayne » 21 Mar 2012 16:52

Hi John

It is good to hear your story and as you had mentioned on my page that you were due to start a stem cell transplant soon I had wondered about more details and was hoping to ask you, so I am glad you have posted.

You are lucky to have 2 sibling donors, that is my only wish! Mine is from America, a very good match (11/12) so fingers crossed no complications!

I'm a bit confused about something though. You mention you have started GCSF injections but Chris says you start chemo next week?

Will you have to be admitted and in isolation like me? Is your chemo doing a different job to mine?

I really do wish you all the very best, keep positive....it really does make a difference.....and meditate!

Jayne xxx
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.
John Watson
Posts: 11
Joined: 12 Jan 2009 10:12
Contact:

Re: MY STORY AT LAST!!

Post by John Watson » 22 Mar 2012 16:32

Hi Jayne and Chris
Lovely to hear from you both. Things happened so fast after a routine bone marrow biopsy in Feb showed an increase in blasts to 5-7%.
Hickman line fitted today and first chemo on Monday, yep in isolation like you Jane!
I started EPO in August last year which was holding my Hb at 9.0ish and white count around 2.0 and neuts around 0.5, but these started to slide so GCSF was added in January. White counts have increased slightly but Hb still struggling.
First chemo session in Exeter, nice rooms but am sure I will be crawling up the walls after a couple of days - although there are static bikes to use with physio support!!
Second session in Plymouth which is a specialist Leukaemia sibling transplant centre. They use 'live transplants', don't like to freeze stem cells, so my brother will start GCSF late April/early May then engraftment mid-May.
This will be reduced intensity as I am an old bugger!!
Your journal has been a real inspiration to my family and myself Jane, you have shown such courage. My wife Liz, has read it, a few tears but she now knows what to expect.
Thanks both for the comments on psychological preparation. I was fortunate enough to participate in track and field athletics throughout the world and found relaxattion and mental imagery etc. invaluable.
Keep positive and healthy both of you, and thanks again.
John xxx
56yrs, diagnosed 2008 MDS - RCMD, neutropenia, anaemia and platelet clotting problem (aggregation). Currently taking Aranesp EPO weekly.
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: MY STORY AT LAST!!

Post by janetstanford » 22 Mar 2012 18:05

John
Good luck for Monday and every day after until you are healthy and well :)
sure jane is pleased you have helped by reading her blog :)
yes when it comes to transplants they do react very quickly this may have something to do with the speed the cells form split and increase so they have to react very quickly
again best wishes take care and please should you be climbing the walls give us a post we will try and take the edge off the boredom for you a little

Janet :)
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: MY STORY AT LAST!!

Post by Jayne » 22 Mar 2012 19:16

Hi John (and Liz)

You will be just fine. I dont know why but I didn't go up the walls or get bored, I seemed to just accept my situation and get on with it. I also found I felt safe in my room, so I didn't want to venture outside anyway. I have actually found it quite hard being home and exposed to everything I have been kept away from.

I didn't have an exercise bike, but I would have liked one! That said, sometimes the mind wants to do more than the body is capable of.

On one of my walk rounds, a Specialist Nurse said to me that the young lads who just buried their heads under their covers all day seemed to fare best. So I decided that whilst in I would sit, sleep, relax and not exert myself in order for my body to do what it needed to do and repair itself. I do believe sleep is a good medicine.

I too visualise, I visualise myself seeing Matt and Jess settled and with grandchildren. I do think of the future positively and I do believe I will grow old with Martin. I particularly focus/visualise Christmas Day with them all around the table. I still look 42 but Matt and Jess are in their 20s/30s with kids, lol!!!!

I have watched a dvd called The Secret. I watched it last February when first diagnosed and coincidentally watched it again this morning in order to re-affirm my positiveness! It's a bit long winded at times but very interesting.

Gosh, you will have a stem cell transplant before me!! You will have to keep me informed of how you are faring, if you feel up to it. I do feel quite scared about mine if I am honest, but I suspect that is normal.

Dont the Hickmann lines look horrible. I really dont like the look of it but I dont feel it at all now, I do wear a vest 24/7 to hold it against me rather than it dangling around, especially when sleeping.

Anyway, take care and I really wish you all the best, in fact I hope your journey goes as smoothly as mine :D

Jayne
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.
chris
Posts: 644
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: MY STORY AT LAST!!

Post by chris » 24 Mar 2012 10:39

Dear John

Wishing you all the best for the first part of your journey back to health. It will be tough for you and tough for Liz having to be a bystander but you sound like a pretty fit person - even though you say you are an old b----r and you have about 4 years more youth on your side than I have so I will be very interested to see how you fare with the SCT- as I may be up for this if my CMML kicks off!! Would also be interested to hear the effects of the GCSF on your brother -though no doubt he will keep discomforts to himself to spare you?! My brother is my donor should it come to it but I don't really know what physical discomforts I might be asking of him and, although he is 3 years younger than me, he isn't always in tip-top health.

Having a live graft does sound more sensible but then many people - like Jayne- have a donor from abroad so I guess freezing is the best solution to make sure the cells are there and ready.

Please keep us all updated if it isn't too much trouble and hopefully, it will be therapeutic for you too?!

Keep well and 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
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: MY STORY AT LAST!!

Post by Jayne » 24 Mar 2012 11:37

Good Luck for Monday John. I will be thinking of you every step of the way.
Jayne xxxx
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.
Post Reply

Who is online

Users browsing this forum: No registered users and 1 guest