Hi Sabs,
Very sorry to hear about your fiancé and I hope that the treatment starts getting things in shape very soon.
I was 36 when diagnosed (just over 2 years ago). I am fairly regularly told I was young to get myeloma but I have come across someone who was 31 so I am certainly not the youngest. The incurable aspect of myeloma is pretty hard to take at any age I reckon, but I take solace in the fact that it can be very treatable. I have come across people of a younger age than myself with other blood cancers who have not been so lucky. And the word “cured” can be a moot point anyway – I think in some other cancers you are classed as “cured” if there is no sign of disease 5 years post-transplant. And I know many people who would fall into that bracket who have myeloma. I guess the differential is that there is more groundswell of evidence that things don’t come back with other cancers, but probably less people who fall into that bracket with myeloma.
Wishing you both all the very best,
Greg
Hi Vanessa,
In my experience, there was about a 6 week gap between the end of treatment and the SCT. Not sure if this was normal, but that was my experience.
Wishing you all the best
Greg
Hi Dawn,
Welcome to the site, although very sorry that you had to find it. I hope you find the site useful in helping you build knowledge and feeling less alone.
I had VCD as treatment, so can help with the V and D aspects. I tolerated Velcade pretty well – it was done via a quick injection – I didn’t have any side effects although I think some have experienced peripheral neuropathy which I think can be difficult. With Dexamethasone, the worst I experienced was sleep interruption and heightened emotions. They were both manageable and to be honest with the latter I think those around you will notice it more than you probably will yourself. I didn’t have thalidomide because I presented with a large blood clot, and so I wasn’t allowed it as I think thalidomide can cause blood clots.
Overall, though, I would say that I found treatment to be much less scary than I was expecting. I worked full-time through pretty much all my treatment, and I found the nurses/doctors at the hospital incredibly helpful, knowledgeable and caring. I am sure you will find the same.
There is no way getting around how much of a shock an MM diagnosis is, and it may take a long time to get your head around things, but please take some comfort from the fact you are not alone, there are loads of wonderful people on here experiencing similar things to you and who are ready and waiting to help in whatever way they can.
Wishing you all the very best
Greg
Hi gjones,
just wanted to say thanks very much for your post and very well done your Dad. I was 36 with 3 young children when diagnosed so I am really pleased to read what your Dad has managed to achieve – long may it continue!
All the best,
Greg
Fantastic news Compass – keep up the good work! Sending warm wishes your way.
Greg
Hi Alex,
Thanks for your post. It’s funny, the more I learn about the allo, the more I realise everyone reacts to it differently. I am probably the other end of the spectrum to you. I got GvHD pretty much straight away (Day 50) even though my donor was my brother and it was assessed as low risk of happening. I ended up with GvHD of the skin, liver and gut. The latter was by far the worst – not very pleasant. But the good news is I got through it and I don’t really have any ongoing problems, barring a few niggles which I think you are always likely to have. I have heard good things about DLI’s and hopefully it does the trick for you soon. My chimerism is still a bit wobbly so I think I have the opposite to you in that my cells won’t lie down and let my brother’s take over (i’ve always been a bit stubborn!). DLI’s are out of the question unfortunately as in my doctors words “it would kill me” so it is just a watch and wait and hope things stick. But i’m happy with that – it beats the GvHD every day of the week.
I am hoping all continues to go very well for you. I think allo’s for myeloma are still a fairly rare beast so it’s always good to connect with those who have done it too.
Cheers,
Greg
Hi Mick,
If it helps, my consultant showed me a graph before I decided which compared remission times between those who have an allo and those who don’t (I wish I could remember the source). Basically, this showed that by doing an allo (rather than not), you were more likely to die in the next 2 years – either through graft failure, complications of the transplant, GvHD, progression of the disease, etc. Then there was a period where people relapsed in much the same way as they would if they had just had an auto. But then there was a flattening out of the “allo” line after about 7 years, where there was strong evidence to suggest that myeloma does not come back if you get to that stage (I think it was for about 20% of patients who do the allo from memory). My consultant was pretty blunt and said something like, “If you want to feel well for the next couple of years, don’t do the allo.” But there was always that carrot that said this might give you a very long-term remission and at 36 years old, I thought it was worth the gamble (and I use that word because it definitely felt like that when I decided to do it).
I wish I could make the decision more easy – but I just don’t think it is possible. It is such a personal decision that I think you have to come to your own decision with what feels right for you.
But I am wishing you all the very best with it. I remember how tough it was to decide what to do.
Greg
Hi Alex,
Thanks for your post – it was really inspirational. I was 36 when diagnosed and I have had a similar treatment plan to you (I am about 10 months behind you) so it is great to hear that you are doing so well. I got pretty bad GvHD after the allo, but I am recovering and it is great to hear everything you say about exercising and playing sport (even if it is badly!).
My personal view is that you have to do some exercise, if only because it is good for the mind (which in turn will be good for the body). I guess we should all be careful about doing too much, but I reckon everyone knows where their personal limit is, so I would just go for it. I had a compressed vertebrae in my back on diagnosis and still have my PICC line in my left arm, so I am careful about those areas, but I don’t hold back anywhere else. In fact, my hospital has a bike and gym equipment in it, so it was definitely encouraged! Probably best to get an opinion from your medical team though based on your specific circumstances.
All the best
Greg
Hi Mick,
I had an allo in Feb 2016, after an auto in Oct 2015. I was 36 when diagnosed so I think they advised it for me given my relatively young age. I don’t think I was high risk.
I echo everything Scott says. The transplant itself was pretty much identical. The big difference was the post-transplant experience. I got graft vs host disease of the skin, liver and gut. I got re-admitted to hospital around Day 50 and spent 7 weeks in, 4 of which I was fed through a tube. It was horrible, I thought I was going to die and at the time I massively regretted doing the transplant because I was pretty well before doing it. I was poorly for about 8 months post-transplant then the bloods kicked in. I am now past one year and feel back to my normal self. The whole experience has left me with pretty bad anxiety though.
So my advice is you have got to really take the time to decide what is right for you. Some people I went through the process with on another forum are no longer with us so it is a serious choice and they are not here to give you their opinions. But I decided to go for it because I wanted the chance to stay alive for the longest period I could. And I figured this was my best chance.
Wishing you the very best and as Scott says please ask away. I want to help others facing such a tough decision as much as I can.
Greg
Hi cpriestley,
Welcome to the forum although sorry you had to find it. Please ask any questions, share experiences or just vent, this is what this is for.
Shock is entirely natural. I was in a daze for a long time post-diagnosis. The best advice I can give at this stage is maybe to read a few info sheets on myeloma, what it is, treatments,etc and take things slowly to let things sink in.
Wishing you and your partner the very best.
Greg
P.S. it is a lovely picture – where is it?
Hi Dan,
I think it will probably depend on the regime and your friend’s specific condition. I had Velcade as initial treatment and that consisted of one injection twice a week. So it involved going to the hospital twice a week, but I was only there for 5 minutes each time so not a big time commitment. Your friend will probably also likely need regular blood tests and reviews with doctors, which again depending on the specific condition, is likely to add to the time. But the chemo itself (depending on the regimen) doesn’t necessarily have to be that much of a time commitment.
Wishing you all the best,
Greg
Hi Lisa,
I definitely remember the euphoric moments and the inability to sleep. I don’t remember the down times so much, but my wife tells me I could be incredibly foul at times. I think what happens is that the steroids accentuate emotions that are already there. So if you are feeling happy, you get a sense of euphoria, if you feel sad you get very down and if you feel angry, a temper can really soar. The best piece of advice I could give is to try to recognise any patterns – so is there a particular point in the cycle when the moods seem to be worse? Then you can plan for when things might be tough. And for me, everything returned to normal once I stopped the Dex, so I would try to see this as only temporary if you can. But I know it is tough when you are in the middle of it, and I think probably hardest when you are witnessing it rather than experiencing it, so I am wishing you all the very best.
Greg
Hi Lisa,
I didn’t have memory issues but I would definitely say cognitive function was impaired. I would sometimes start conversations and then by the end forget why I started them. All that stopped when I stopped taking Dex so hopefully that will be the same for your husband.
All the best,
Greg
Hi Simon,
I recognise a lot of the emotions in your post. I think it is entirely natural for you to feel scared – i think everyone does. I don’t know your specific situation but myeloma is a very treatable disease and there are people on this site who have lived with myeloma for many many years. The stem cell transplant process can be tough but I have had two and recovered well from both of them, and the process is getting safer all the time. So I can’t tell you not to be scared – after all, cancer is scary. But you can live very well and for a very long time with it, and forums like this are great for sharing experiences and connecting with people going through a similar thing.
Wishing you all the very best,
Greg
Hope you manage to get it sorted out really soon.
Greg
