Hi, this is my first time posting. My husband was diagnosed with Acute Lymphoblastic Leukemia May 2020 and had a stem cell transplant October 2020. His initial recovery from that was going well until he needed to get a DLI (his donor was his sibling). Unfortunately they made a huge mistake at the hospital when giving this transfusion, they pulled the wrong bag and he got a larger quantity than required. This caused side effects with Graft V Host issues which setback his recovery somewhat. He lost a lot of muscle mass through the treatments he received and has also been left with nerve damage in his feet from his second round of chemo.
This journey has been a long and tricky one. I can't see an end to it all at the moment. His pain is constant and debilitating, he struggles to walk very far or for very long and now has joint pain everywhere. He's at the point he is off steroids and producing his own but the steroid was keeping the joint pain under control. I wondered if anyone has a similar recovery story. If there is anything that helped or ways to overcome or adapt. We are both finding it tough right now, physically and emotionally.
Hi LivingwithALL and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various blood cancer groups.
I don’t have ALL but was diagnosed in 1999 with a rare, incurable but treatable type of NHL (CTCL) Stage 4a so although my blood cancer ‘type’ is different I know this journey rather well.
Your husbands SCT story rings so many bells with me as I have had two Allo (donor) SCTs with cells from my brother.
The first was June 2014 that lasted until Dec 2014 so I went back for a second in Oct 2015 with remission achieved in Sep 2016. The first long term remission in 17 years as until then I was only ever in remission 6-9 months.
It’s a very long story so to save time hit my community name Thehighlander and see my profile.
You may also find this ongoing thread helpful. It’s does ramble at times but it dies highlight the post SCT journey Life after a SCT - A Survivor's Guide
Happy to answer any questions and support you both ((hugs))
I had a stem cell transplant following having ALL in May 2013. The journey afterwards was bumpy for me with GVHD of the skin and gut amongst other issues. You can have a read of my journey by looking on my profile HERE
At the time after having the SCT you feel that you will never get back to normal.. but you do and life goes on. It just takes a bit of time and you have to believe that it will improve and push yourself a bit further each day. Any questions feel free to ask.
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
Hi again LivingwithALL we (Fiona and I) can't imagine the challenges of going through SCT with some of the restrictions that were put in place in SCT units.
Mind you during my second Allo my wife could well have been on the other side of the world as I was well out of it and often she just went back to Inverness ot over to our daughters in Edinburgh and called in every day and the team were great at keeping her in the loop.
My SCT team recommended Rehab to my Haematology unit in Inverness and they arranged it. But have talked with many others and this kind of joined-up thinking does not often happen so yes, ask.
I totally benefited from it as it was the intal move to get me out of the wheelchair and on the walking sticks then a few months of physio to get some muscle built up. They then advised me to go to our local Maggie's Centre where they ran a weekly Men's Circuits Class run by a cancer trained Local Authority Fitness Instructor who gave tailored exercises to everyone to build up our muscle mass....... I even bought my own resistance band and try still to do some of the exercises.
The Instructor also said that we (anyone with cancer) could get a few free one on one induction sessions at the main Local Authority Gym and reduced membership.
Yes, it can take some time and it takes significant perseverance to get there. I would say it took me a good 2 years and this was about the time I asked for my repeat prescription pain meds to be removed from my file.
My type of Lymphoma was a skin Lymphoma so light therapy was part of life for over 15 years and I did have some skin GvHD but it was mostly controlled with steroids but we did give a few areas a blast of UVB light treatment. This was arranged by my Hematology department at my local Dermatology Unit that I had been visiting for those 15 years.
Yes, I was under the same team but at The Beatson so I know Dr P and the rest of the team very very well.
Once upon at time people who went through treatments like SCT were given time to recuperate and get the post treatment input at a rehab centre but there is no NHS budget for this now.
I have talked a few times with both the SCT team and my Heamatology team about how it would improve post treatment outcomes and in the long run save money with regards to late effects.
I actually have my yearly Late Effects call with the QEU Kate Effects nurse this afternoon.
Sorry for the slow reply. I was referred to a dermatologist at the Royal London after having my SCT at Barts. She suggested UVB light treatment in their pods. I had 25 sessions starting at 2 seconds and I ended up at 8 seconds from memory. It certainly helped. I still find my skin is much better when I get some sun on it. I never had bad rashes but when I came indoors from the cold then it felt like my skin was crawling so I used to go back outside and stand in the cold. I still wont sit by a radiator if we go out but strangely the warmth of the sun is fine. It seemed to react to sudden temperature changes from the cold to the warm. it is much better now but during the depths of winter is when it can still be a bit itchy but nothing that causes problems.
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
