Hi Lewisboy,
Sorry to hear about your dad’s diagnosis, but pleased they have picked it up before any fractures.
My dad was diagnosed at 62 back in January 2013 and his symptoms started with rib pain and he finally got diagnosed after being admitted into hospital with pneumonia.
Having been through a similar journey to you I understand all of the questions you must have right now and was one of the reasons I volunteer here on the forum to share my experiences to try and help others in a similar situation. I had barely even heard of MM when dad got diagnosed, other than a friend’s dad who had died from it after a very late diagnosis so it was a worrying time.
One thing I have learned over the years is that MM is a very individual disease and there isn’t a one size fits all treatment. Dad was very poorly when he was diagnosed and spent quite a bit of time in hospital and had blood transfusions which not everyone would have. He didn’t have any fractures but had a lot of bone damage so getting that under control was important. Dad was initially treated with CTD (cyclophosphamide, thalidomide, dexamethasone) though now treatments tend to be with 4 drug combinations. I cant remember now how many rounds of treatment he had but it worked well and he then went on to have a stem cell transplant in August 2013 which, whilst tough, gave him 7 years of remission alongside revlimid maintenance and zometa infusions to maintain bone health. I would say it took him a year to fully recover from the effects of the stem cell transplant – most notably the fatigue, but he also lost his hair (though it grew back without greys which he was quite happy about!) and suffered gastrointestinal side effects.
Overall he was very lucky not to suffer too badly with side effects of the initial treatments, though the steroids did make him balloon up and moody and in all of his treatments to date his taste buds have been impacted though normal sense of taste eventually returned once treatment stopped.
He relapsed in late 2020 which we spotted straight away when he began suffering hip/back pain which was confirmed by his routine blood tests. He was treated initially with DVd (daratamumab, bortezomid, dexamethasone) which works well for many, but unfortunately it did not work for dad and he suffered bad gastro side effects and lost a lot of weight and felt very poorly. He had a break then was put on his current regimen of dexamethasone, revlimid and ixazomib which so far is working and he is on cycle 8 of 12. He still has his zometa infusions. He has a little bit of fatigue, gastro issues and tingling from the current treatment and the usual side effects from the steroids (also forgot to mention it messes with his sleep for the 24-36h after he takes them) but all in all is much much better in himself.
Initially he was on monthly blood tests and consults but this is now down to two-monthly. In terms of seeing how fast results come through, the bloods will give you a guide, but beware of rogue readings- sometimes it is just that – so take the trend as the main reading. Dont be afraid to ask as many questions of your dad’s medical team as possible throughout and flag anything you are concerned about. Also, a notebook helps as there are a lot of new terms/drugs etc and helps to organise thoughts so you dont forget to mention things in the consults – at east I found it helped me.
During dad’s remission he lived a virtually normal life.
This is just our experience and as I mentioned at the start, everyone’s experience/responses to the meds etc are different, but I hope it has helped a little and gives you some reassurance that whilst it is a terminal disease, it is very treatable and there is a lot of research going on which is moving things forward all of the time. There is a lot of support available via your dad’s medical team and here on the forum or the infoline 0800 980 3332 as well as the peer buddy system (see under help & support tab for more info) and local support groups so please don’t feel alone. Wishing your dad all the best with his treatment xx
kh0305.
