Talbot G
Posted by

2016 is going to be a great year !

Talbot G
Posted by
04 Jan 2016

Donor transplant this time round.

Hi All,

Just updating my blog, it has only taken me a year !

After my own stem cells grafted on in November 2014, I was discharged from hospital on December 2nd and enjoyed Xmas at home. In 2015 I kept up my walking regime in preparation to go back to work, which I did on March 1st. I was glad to be back at work and getting back into life's routine again. I did go back on a six week phased return, building up my hours to a forty hour week. Family life was wonderful. I also got involved with the local leukaemia and lymphoma Essex branch collecting funds once a month for two hours standing outside tesco's which I really enjoyed !!

At the beginning of June 2015 I woke up with a taste of blood around my lips and thought I had bitten my tongue in the night. I went into the bathroom and stuck out my tongue and it was covered in red blisters!  I instantly thought of a relapse, you just get to know! 

I took myself of to Basildon Hospital at 0730 was seen at 0800hrs where they took bloods and the results showed my platelets where sitting at 5. Another blood sample taken by the heamotologist consultant confirmed that the apl had returned. A few choice words were muttered by me and then I kicked myself up the backside and said ding ding round 3 !

I was given a pool of platelets and then called my wife and off to Bart's Hospital again,where I went straight onto Atra/arsenic trioxide protocol, which got me into remission by end of July. I then became an outpatient  and even managed to go on a weeks holiday to the Isle of Wight.!!!

Upon my return I continued my treatment whilst the hospital searched for a donor as my two brothers were not a match. Success within 10 days they found me a donor from America. Disaster then struck as one of the tests on my central nervous system (CNS) came back positive and some of those little cells got through. Chemotherapy and Radiotherapy has cleared the whole site and now on 6th January I will be having my 2nd stem cell transplant. Despite all of this and nearly another year gone by I still remain positive and know we will get rid of this disease.

So to anyone whose has just been diagnosed with Apl or anyone going through treatment remain positive as it will help you through your journey and remember if you are unfortunate to relapse there are plans B and C in place if you do .

Will update you as I continue this personal journey and if you want to respond with any questions or fears you at have, I will try and point you in the right direction.

Re

 

 

 

 

Comments

06.01.2016

Hi Garrie,

Really sorry to hear about your relapse but delighted to hear that you found a donor and that an end is potentially now in sight.

We're behind you every single step of the way as you start the transplant treatment. I've been there myself and whilst it isn't an easy process you will get there in the end.

Stay positive, take every day as it comes and don't be too disheartened if things take a little longer than expected. I found setting myself goals and planning things to look forward to on getting out really helped.

I'm sure you've been bombarded with information and are well looked after by your treatment team but you might also find these information booklets on the transplant process and the steps to recovery post transplant useful:

https://bloodwise.org.uk/sites/default/files/documents/seven_steps_march...

https://bloodwise.org.uk/sites/default/files/documents/anthony_nolan_the...

The seven steps one is particularly good and I wish I'd had it available to me when I was undergoing my transplant!

Andy