Hi Cat,
I was 42 when diagnosed, approaching 50 now. It is a shocking bleak outlook at the beginning, particularly if you google myeloma and read some of the out of date rubbish that is out there. I think this site is a great information resource, but I’d advise making lists of questions and taking them to your appointments to get answers, or call the ask the nurse line at myeloma UK.
I would describe my experience so far as “almost normal life, interspersed with periods of treatment taking over until normality resumes”. The treatment, especially SCT, can be hard at the time, but the memories fade and the return in terms of treatment free time is well worth it.
It sounds like you’re young and healthy (apart from the obvious) and tolerating treatment well, so hopefully you will get it under control and get back to normality soon.
I wish you all the best,
Adrian.
Hi Katy, I’m Adrian and am 4 weeks post sct no.2. As Helen and my wife tell me, most of the activities seem to be on Facebook now (uk myeloma support group) but I will try to give you a bit of information from my own experiences. I don’t want to scare you, but feel I should be frank, as I will describe, it is hard, but worth it.
I had my first sct in 2013 when I was 44, my personal situation is a bit different to yours in that we do not have children at home and my wife is not working so she can spend time looking after me. However, we do have 7 and 9 year old granddaughters that have been full of questions. I can recommend the info books from myeloma uk for giving good technical info, they also do some simple fact sheets which are great for explaining things to youngsters (and adults too!)
Firstly for you, the sct process will soak up a lot of time over the coming weeks, the mobilisation therapy takes a full day in hospital for chemo, followed by about a week having daily injections but these are done at home. After this is the actual collection which again is a full day in hospital. First time around I suffered no side effects at all from mobilisation and collection, second time I got a little nausea, some bone pain like a deep seated ache and a bit of hair thinning but otherwise ok. There is usually a pause of about 2 weeks between collection and transplant, but during this time are various tests for things like lung, liver and kidney function, plus a heart assessment, together these take about 3 full days.
The transplant itself is quite hard, I would plan on being in hospital for at least 3 weeks. It starts with inserting a central line which will be sore for a couple of days, the high dose chemo is actually not bad on the day, it is followed by lots of fluids so if it is done in a day unit make sure you can sit close to the loo! The chemo was supported by drugs for anti sickness and to help protect kidneys, take them even if you don’t feel sick, it is better if you can prevent it happening in the first place. You’ll get your cells back the next day, the preservative makes you smell of tinned sweet corn for several days, although you won’t notice it after a couple of hours. Over the next few days, your blood counts will fall and you will become neutropenic, this is when you will start feeling ill; diahorea, sickness, probably a temperature and very washed out and sleepy, I spent most of days 4-9 asleep both times, you will also lose most of your hair over the next week or so. As soon as the cells start working and your neutrophils start rising, you will feel a bit better and the diahorrea and temperature will subside, but don’t expect a rapid recovery. I went home on day 19 first time, day 14 second time, but both times I suffered terribly with nausea for several weeks afterward, it takes a while for blood counts to get anywhere near normal so you will tire very quickly and be VERY susceptible to infections. I also found that mental acuity and concentration span were severely reduced for several weeks too. I went back to work part time in week 10 first time around, I was ok, but then caught norovirus and ended up back in hospital for a week because my body could not fight it, after that, I got back to completely normal by the end of month 5.
After transplant 1, I had nearly 5 years where I was in complete remission and did not have to undertake any treatment or take a single pill on account of myeloma. In this time I enjoyed life and family, and achieved several life ambitions including some exotic travel and getting a pilots licence. Myeloma is always in the back of your mind as we know it will come back at some time, but the value of the remission time easily outweighs the difficulty of the sct process in my opinion. This time around, I am hoping to do a little work before Christmas and am currently thinking about some personal goals for 2019 and beyond.
For others, it is a bit more difficult to know what to say as everyone’s situation is different. You will need a fair bit of support when you get home from hospital, your partner and children need to understand and be prepared for this, it will be a few weeks before you will be the domestic whirlwind you were before all this started. For my family, friends and colleagues I find their reaction to knowing I am having aggressive treatment for cancer uncomfortable, so I give a cut down version of what is going on and put on a “I’m great “ mask whenever I see them, my wife is really the only one who sees the truth. I have found the publications from myeloma uk useful to educate my employer and the simple guides excellent for explaining things to the grandchildren.
It’s taken a couple of hours to write this and I need a nap now so I’ll sign off. I hope it is helpful. I can say I have met a lady in the local support group recently whose situation is almost identical to yours, my wife tells me she is very active on the Facebook group with regular updates as she has been going through the process, if you use Facebook, it will be well worth a look.
I wish you all the best for your treatment, if you have any questions, please reply and I will do my best to answer them.
Take care,
Adrian.
Hi Lesley,
I was diagnosed last year while working in the USA. I did 5 cycles of Revlimid, Velcade (by subQ injection) and Dexamethadrone and stopped just before Christmas when I came back to the UK. This is the latest treatment combination available and I was lucky my insurance would cover the cost which is quite high, it is not currently available on the NHS.
My disease activity is now almost nil, so the treatment was definitely effective. I am now moving to a stem cell transplant because I am in such good condition.
During the treatment, I had little in the way of side effects; I continued working all the way through, I had a little bit of nausea controlled by eating little and often, some fatigue so I took a power nap in the afternoon and a tiny amount of peripheral neuropathy which has now receded. I also had some sleep pattern disruption caused by the Dex.
If my experience is anything to go by, revlimid is the way to go. It is a generation newer and more readily tolerated than the standard treatments seem to be.
I hope this is helpful, but your Dr should be able to advise you as well.
Take care and all the best, message me if you want more details.
Adrian.
