It is ten years today since I was diagnosed (age 44) and whilst that is not to be celebrated I am celebrating still being here. I had the gold standard treatment of Chemo, SCT and recovery over a period of a year, giving me full remission with non detectable pp until two years ago-they are only at 6 now. I have had no treatment other than monthly primidrinate and a cocktail of pain medication due to fractures to several vertebrae. I celebrated with lunch at Cromlix House in Dunblane today-thanks Helen and Irene for the treat not to mention your help and support over the years. Tomorrow more celebrating with a day in St Andrews with my husband (more yummy food hopefully) and a drink or two (I think we both deserve a couple). I hope by sharing this people who are at the start of their myeloma journey might take comfort from the fact that years of living a good quality of life can be had even though there are hurdles to cross.
That’s great news and inspiration to us all. Thanks for posting this. Looking forward to seeing something similar in 10 years time !
Hi Linda – Many congratulations and hope you too are having some bubbly! It is great to hear that this achievable- posts like yours are much needed boosts to us all. Enjoy your celebrations
yes congratulations to you being happy and living life to enjoy with your family. My dad was diagnosed on New Year’s Day ! so this gives me and my dad great hope for the future, ( and I will show him this forum as he’s not very clued up on the internet ☺️. He is 72 otherwise well and due to start his 5th cycle of VTD. But these last couple of days his legs have been very weak with intermittent pain . I hope this subsided soon as it’s very sad for us to see. It must be great to get a remission so all the best for the coming years .
Davidsimister, how has your journey been ?
My journey began in 2013 when I was 59. I was in a pretty bad state with spinal compression and could hardly move for 6 months due to back problems. 18 months of treatment followed with radiotherapy, CTD and stem cell transplant. My quality of life is much improved and pps have only just started to rise slowly again, so that’s six years on and I have a bit further to go to catch Linda.
I found that the early stages of diagnosis were very difficult and as a result I started the West Lancs and Merseyside myeloma support group for patinets and carers. This has been going 3 years now and is very successful.
They say that it is a marathon, not a sprint – and I think this is the best way to approach myeloma. They also say that myeloma is very individual which also seems to be true, particularly in the way patients respond to treatment.
Hope this helps.
Many thanks David. I’m delighted to hear you are 6 years down the line. I agree the first few months getting your head round things are tough, and life in general has to change a bit to accommodate hospital appointments, tiredness, pain etc. I too run a support group, along with a friend. I would highly recommend it to anyone considering whether to join a group or not. It makes such a difference having people to discuss things with, speaking to people who know what myeloma is is comforting!
I had a lovely day away yesterday with my husband, only to be duped into a visit to my sister’s which resulted in a surprise party for me. It was just wonderful, I have been very lucky indeed to have a good supportive family around me from the beginning.
All the very best for lots more good quality life with myeloma.
Hi Jenny, I’m sorry to hear your dad is receiving treatment for mm. I do think that it can be harder at times for family and friends to watch a loved one go through a cancer. The feeling of helplessness and despair must be dreadful. I know I felt guilty about putting the burden of mm on my family but on the other hand I also know that my family 100% wanted to support me through it all. Try to take things slowly and get as much information as you can. The more informed you are the more you can deal with things and keep the worries in perspective. The secret to living with myeloma is enjoy what you can when you can. When there are days that are not so good then relax and let them go in the hope that tomorrow will be better.
Do get your dad to report his sore legs to the team looking after him. Whilst I didn’t have sore legs it may be quite a normal side effect at this stage. His team may if necessary alter the treatment in the hope that discomfort subsides.
Wishing your dad all the best for a good remission and speedy recovery. Hope the journey isn’t too tough on you either.
Hi Rebecca, Many thanks for your good wishes. My celebrating continued into the wee sma’ hours due to a surprise party my sister and cousin arranged. I won’t be moving too fast this morning, just because of tiredness 🙂🍷🍾.
Do you or a family member have MM?(hope you don’t mind me asking)
Hi Linda – great to hear you had a fabulous time – I come from a family of long livers with no cancer connections. I was diagnosed at 50 and whilst light chains were relatively small they aggressively attack the kidneys (14:16 translocation) I had chemo for 8 months Sct then drug free currently at 4yrs 4 months post Sct. I do get tetchy now wondering how long my run will last so love to hear from others who have enjoyed long runs of drug free time. Long may we continue!
Linda, well done on such a good record after your sct. Perhaps one day, and not too long into the future, a modified and enhanced sct may finally be the complete cure to this miserable disease.
Rebecca: I think we’ve posted before. Looking at yours above, and I note your comments regarding your translocation and feeling ‘tetchy’. And I think your feeling this is probably worse, in a few respects to your translocation, as far as overall well being is concerned! Obviously, and unfortunately all sct’s will finally give way to relapse, since they’re not a cure, but as Linda has shown, this can be in many years time! So there’s all to play for. Can you say what your current level of flc’s are? And what your eGFR is? They should be okay, or you would have had a caution from your consultant. So I know it’s easy to lapse into negative thoughts — from some websites, or from waiting room chatter — but there’s many posts like Linda’s that give a great message. So stay positive, get your blood tests done at a frequency agreed with your consultant, and try and forget those tetchy nasties…
Best wishes to all,
Perhaps we should ask Myeloma UK to do some badges for us to wear at 5, 10 15, 20 years post diagnosis – bronze, silver, gold, platinum !
I love the idea of those badges 😀😀
Well done on 10 years Linda. A definate reason to celebrate and thanks for posting it. It helps to know of these celebrations.
Take care all
Just a quick update on what’s been happening. I’ve eventually had my mri and I had appointment for 12th of June to get results, only to receive a letter today to say it’s been cancelled until the 19th. So im thinking I’ve not relapsed as they would have got me in sooner. Has this ever happened to anyone else? I’m finding the morphine is keeping the pain under control and I’m keeping positive 👍
It does sound positive. ive till got fingers crossed though.
Sorry not to have been in touch sooner
Let us all know how it goes.
Take care care
Only just read your post. I have had such problems with logging onto the Web Site that I nearly gave up.
Your story will no doubt encourage others. In spite of Myeloma being a dreadful disease, aren’t we fortunate to have it now rather tha 15 years ago. The first two years on the Site, starting in 2010, I seemed to have lost one cyber friend after another.
Let’s all keep fighting and being grateful to all those Specialists, Researchers and individuals taking part in Trials, who together make the outlook a lot more hopeful.
All love to you. May you be celebrating in another 10 years,
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