Steve J
Posted by
Steve J

A little scare.....

Steve J
Posted by
Steve J
04 Jul 2017

Last few months post transplant...

I`m now a year and a half post transplant - "hurrah" and life had started to settle down to a state of normality until I went on Holiday to Northern Cyprus in early April. I and my partner Claire had been really looking forward to it as it was our first holiday together for several years. It was also the first holiday abroad  so we were looking forward to flying and catching some guaranteed Sun. A couple of weeks prior to going I had a peculiar episode which entailed an emergency visit to the GPs. I had been making some Jewellery at home (we`re both Jewellers) and one morning experienced the sensation of crushing pains and tightness in my chest. I went to bed for a few hours and was woken at lunchtime by Claire who rang from work. I explained what was happening and she urged me to ring my specialist nurse Jo at Addenbrookes for advice. I can`t remember who I spoke to at Adds but they suggested I get down to my GPs to see if they could do an ECG. They conducted one and all proved okay, I wasn`t having a heart attack and the possible explanation was muscular strain from "overdoing" things.

Anyway, back to April and our holiday in Cyprus. We`d gone for ten days and a couple of days prior to going home I started to experience pains in my bones, mainly in my shoulders, chest, pelvis and thighs. The pain, which I can only describe as feeling as if you have a throbbing, pulsing headache in the bones, was very reminiscent of the symptoms I had when originally ill. I  spent the day lying on top of the bed trying to rationalise the situation - was I relapsing ? why was this happening when we were so far from home ? Claire was sufficiently worried to look into booking flights home for the next day. I talked her out of the idea and suggested we contact Adds upon our return and if neccessary visit them on our way back from Stansted airport. As it transpired the pains eased off and we were able to finish our holiday. I didn`t contact Adds upon returning to the UK, reasoning I was due to see my consultant within ten days anyway. The pains had pretty much disapeared until the day before my consultation. Again I experienced the aching sensation but this time with the added problem of mobility issues - I found it painful to walk and to retain my balance. I saw my Consultant and the same day they had me scheduled to have a further Donar Lymphocite Infusion. (this had been planned while I was away in response to a worrying reading from my last bone marrow aspirate) The DLI was postponed when my Consultant saw my physical state and after I had explained the symtoms I was experiencing. I was put straight back on Imatanib as a precaution and the DLI was to be rescheduled as soon as I had given a more current bone marrow aspirate. 

Now to current events - the results of the Aspirate are back and I have had an increase in the amount of Philadelphia + gene detected in my marrow although thankfully this has been checked after going on the Imatanib. I will now be having the DLI next week. This will be my second dose and the first of the batches that were frozen. I didn`t have any GVHD after the first infusion so I am hoping it will be the same for the second. In the meantime I am trying to live my life as normally as possible and to some extent that is happening but the reality check I`ve had in recent months is sobering....

Steve   

 

Comments

06.07.2017

Steve, so pleased you got that holiday. Even though it is eight years post SCT I was relieved when I got home from a holiday abroad this year....Leading up to the holiday I started to panic in case I was taken ill (heart problems due to treatment). I am sorry that you have had a setback, but hopefully all will go a little smoother from now on. Best wishes

06.07.2017

Steve, thanks so much for this blog, gosh it sounds so scary, especially when you are away from home, and even more being abroad. I so relate to going on high alert. I am glad Adds are so supportive and on the ball. I hope this episode won't put you off taking well earned breaks away with Claire, who sounds a real support, take care and keep blogging.

 

09.07.2017

I'm pleased you got to have a well earned and long overdue holiday, as a fellow ALLer, I know how your life changes and those things are precious. I don't think worry will ever leave any of us completely, but here's hoping you can take this setback for what it is and get on with your life with your lovely partner xx

24.07.2017

Really sorry to hear that your holiday to Cyprus was interrupted by the scare which must have been incredibly nerve-wracking and a huge dilemma.

I remember many years back when I was travelling a couple of years or so after my transplant that I came out in a really horrible rash which doctors feared might be a sign that I was being affected by some fairly serious chronic GVHD which had it been the case would have meant that I would have to cut my trip short and gone straight in to see them.

Fortunately in my case it wasn’t GVHD and the rash went down so I could keep travelling but it put the seed of doubt in my mind and the trip wasn’t really the same afterwards.

I’m glad that you went to see your consultant when you got home and that there is now a course of action there for you on how to nip the pesky Philadelphia + gene in the bud once more. Good luck!