[tom246]

A year after diagnosis & 1 month post transplant

by tom246 on Sat Dec 05, 2015 8:03 pm

Hi,

I came across this site when I was laid up in Addenbrooke's hospital in Cambridge (England) and I thought I would post the highlights of what has been about a year of diagnosis and treatment.

It was about a year ago that I went to my local doctor for an issue that was unrelated to myeloma. During that visit, I mentioned that I was also feeling tired and occasionally light headed.

I was referred to my local hospital for a blood test and this indicated anaemia. Subsequent testing led me to a consultation at my local hospital where I was informed that I had myeloma and a biopsy would provide confirmation.

After confirmation, I was referred Addenbrooke's in Cambridge, which was about an hour away.
I was a bit lucky to have a top notch hospital and consultants on my doorstep.

So less than a week later I was in consultation and that day I signed up for the clinical trial and started treatment. The trial actually gave the standard treatment - randomised.

So I was on a 3 week cycle. These would continue until I hit the targets.

So three weeks later I was back. Good news – I had responded well.

Next 3 weeks and a better response.

Next 3 weeks and now we talking about the stem cell transplant.

Mid May and I get a severe case of diarrhea (found out later it was caused by salmonella) and initially tried to ride it out. I eventually get to A&E (Accident & Emergency) and get admitted and spend about 8 days in the ITU (Intensive Therapy Unit) and am discharged.

A few days later I am back with a clot in my left calf. So another week in the ITU.

I am weak, and my treatment is stopped and my consultants want me to take time to recover.
This delay is about 5 weeks.

Eventually back on the treatment and its all going well. I hit the targets and now is the time to generate and collect the stem cells.

I have a central venous line (CVL) inserted and the cells are collected. It's a Tuesday.

It's now Friday and I am at home. I start to shiver so get under the duvet. My partner comes home later and she is worried. We call an ambulance and get me to hospital. In the ITU again.
Sepsis from the line.

So transplant delayed again. A course of antibiotics is required along with rest.

Transplant rescheduled, but I get a pain under my armpit. I think its a strain. My specialist nurse is worried. She was right to be – another clot (now in my right upper arm). The replacement CVL is removed.

I must admit this was really the only time I felt I wasn't going to get to the start line. Had a few tears of desperation and then I got on with it.

So eventually I got to the transplant unit. This had to be easy. It was.

Ok - I had a few days where I could not eat or swallow, along with a bit a diarrhea. Those visits to the ITU had toughened me up.

I was in there for 12 days - the minimum.

So now a month later.

I am not so tired now. Have been out for a beer a couple of times and looking to up my exercise.

All the indicators are good. My new consultant (for the transplant) is pleased with my progress.
The anti-clotting injections will finish at the end of the year and just left with some medication to protect against shingles.

I consider myself to be lucky. I was diagnosed early without any other issues and I was able to be treated (so far so good). I put my faith in the specialists and followed the advice given.

I don't know if this will be useful to anybody, but it has been good (for me) just to write this down.

I am 53 and English and all my treatment continues to be free under the NHS.

[Lev]

Re: A year after diagnosis & 1 month post transplant

by Lev on Sat Dec 05, 2015 10:26 pm

Hi Tom,

Good to hear that you have succeeded with your treatment and are feeling well, including being strong enough to go out for a beer.

Your experience sounds very much like mine, except for the complications pre ASCT. And I was maybe a little bit slower recovering than you.

May I ask .. Which trial did you join pre ASCT? And how are your numbers post transplant?

Best regards and good luck on the road forward.

lev