Hi Holly,
My name is Scott and I’ve not been on here for a while. I came on today to see if there was any information on the Immunotherapy treatment mentioned in the news today.
Anyway I digress…I have had both the Auto and Allo (RIC – Reduced Intensity Conditioning). I was diagnosed in Aug 2013 at the age of 41. At the time I had broken vertebrae in the lower back and could hardly walk. I was diagnosed with lambda light chain myeloma at ISS Stage 1. My light chains were approx 1500 when diagnosed (which to be fair is quite low considering other patients I have read about). I was randomised for CTD and had 4 x 21 day cycles but my light chains had reduced to approx 26 after the first month so I had a really good response. I had my auto in the Jan/Feb 2014 and then 6 or so months later I had my allo (which I believe they call a Tandem Treatment). My consultant told me that I would probably get the best response and longest possible chance of remission with this tandem treatment. My allo was in June 2015 and my now second birthday is 26th June (the day I received my Donor Stem Cells).
My donor was MUD (matched unrelated donor) with 10/10 tissue type and CMV negative. I was lucky in getting this donor so soon and I must say, that as previous people have said, that the auto was worse for me than the allo. With the auto, I spent 9 days in Hospital and was fatigued for a good few months later due to the Melphlan, it really wiped me out. With the allo (SEATTLE PROTOCOL) it was done as an outpatient and I did really well (however I was told that the allo is generally well tolerated). I did have a few lingering colds (4- 6 weeks) at a time and a few other minor issues such as lack of saliva for 6 months (I think due to the dose of radiotherapy I had at the start of the allo treatment). However, this cleared up gradually after I came off the cylcosporin completely. I now feel really great with hardly any GVHD and I have a check up once every two months. I still have Zometa monthly though. I was back at work more or less full time in approx 3 -4 months after the allo (however I wouldn’t rush back if I had to do it all again).
I did my homework initially, however, as you said there is not a great deal of information out there for allo’s because not too many are done. I did get offered the myeoblative (full allo) but considered that too risky with the mortality rates that were mentioned at the time, so I opted for RIC allo and then put my fate in the hands of Science to help us all find a cure in the near future. Sometimes I even forget that I have myeloma (although in remission) and live a pretty much normal life.
Would I opt for the allo again? based on the donor profile I was lucky to receive…I would, all day long. However, the decision is yours alone to make after careful consideration with your consultant.
Good luck…and remember your young and fit and so that is in your favour. Be strong in mind and this will help you a great deal.
If you need to contact me direct then please don’t hesitate to e mail me on scott.mckenzie2@btinternet.com
Kind Regards
Scott
