Hello Christine,
Your post concerning whether or not to undergo an SCT is very understandable, especially since you have such good results from your early treatments. Can I suggest that you will get very few posts back from MM patients who have not opted for the SCT route, but have had alternative ‘successful drug treatments’ simply because obviously your medical team are the best people to
advise you regarding your options, and no one would want to disagree with what they’ve said. However for what it’s worth — I was diagnosed (66 Yrs) with this miserable disease (<3 years ago), and was advised against having an SCT. The main reason being the threat of looming prostate cancer. It was considered that if this was confirmed (and it was!) having an SCT would just interfere with the prostate treatment, and take too much out of my already depleted immune system. So I commenced MM drug therapy and whilst it’s had it’s moments and been difficult at times, I have also enjoyed fairly long periods of remission.
The problem with MM planning is that the individual’s responses to SCT/non-SCTs is variable. So the mere fact that I’ve had a ‘reasonable time’ just on novel drugs, doesn’t mean that you will. And this obviously applies to SCTs as well. I can’t remember the actual numbers, but I think there’s about 3000 new MM cases diagnosed each year, so my one post and the few from patients who have had really good SCT experiences need to be taken with some caution I suggest. So what do you rely on? Obviously speak to your consultant and ascertain the risks etc of the SCT route, and discuss the possible side effects of long term drug use (which may get worse as time goes on?). This hopefully will put your mind at rest regarding the SCT. I’ve also attached a link (from the Myeloma Beacon Site) that summarises a study done (covering patients 2006 to 2014) by the Mayo Clinic, who investigated two large cohort groups – one being treated just with drugs (VTR) and one being treated with drugs after undergoing SCTs (within 12 months of their diagnosis). The question of whether or not ‘an SCT’ is obviously important, but there’s also the question of survival rates. The study concludes that average (median) survival for the non SCT group is 110 months (9 years), providing the patient first relapsed late. And for the SCT group: 122 months (10 years) again for SCT patients who never experienced an early relapse. Survival seems to DEPEND upon how long the patient took to first relapse — and damaging high risk chromosomal abnormalities like del(17p), t(4:14, 14:16 and 14:20) translocations. It’s probably a lot to read, but as I said it’s difficult to judge what to do based on my single post, and a few others, so we’re only left with the bigger picture.
http://myelomabeacon.org/news/2016/05/27/myeloma-morning-early-relapse-survival-ninlaro-kyprolis-europe/
Peter. P.S. (to the guys: I had 20 days of prostate radiotherapy and this has effectively killed off the cancer cells [psa approaching zero on 2 consecutive tests]. Macmillan say that 50% of all men over 50yrs and 80% of all men over 80 will have some prostate cancer cells. With 3000 new MM cases diagnosed each year and half of these men, you guys can do the sums yourselves… Prostate cancer will kill you quicker than MM, and whilst it’s tricky to combine both treatments, it was in my case a necessity. So I think regular psa tests are essential).
