Tagged: Peer
This topic contains 27 replies, has 12 voices, and was last updated by 
davidw 2 years, 6 months ago.
Hello everyone,
Introducing myself here: I’m David, from London, and I was diagnosed a couple of weeks ago after a stay in King’s Hospital due to a collapsed vertebrae.
I start treatment next Tuesday (dexamethasone, thalidomide, daratumumab, bortezomib) and also have radiotherapy on the spine to come.
My head is still spinning from the diagnosis; I feel like my life has been thrown up in the air. And, now I am hurtling into treatment. It is so much to get my head around and I’m feeling pretty all over the place about it.
Really just looking to hear other people’s stories of how they came through this treatment and to try to find a bit of positivity, rather than worry and anxiety, to approach it with.
Thanks, David
David
Wishing you all the best for your treatment. I remember the shock when I was diagnosed nearly three years ago and went through the same chemo , radiation and then stem cell transplant that lies ahead. Yes your head will spin but then you will get on top of this ….The treatment of Myeloma has seen incredible advances over the past few years and for many of us now means we can live a near normal life and you should be optimistic. The tips I would offer from my own experience are 1) record your sessions with doctors as they can use a lot of jargon and I found it difficult to process ( live ) what was being said as I was stressed at the start – 2 ) use wwww.Healthtree.com to help educate yourself ( a fantastic US resource )3) be prepared for dexamethasone ( a steroid ) to have some side effects on your mood and warn your loved ones ( that tip comes from my wife !
I wish you all the best for the coming months – pace yourself as Myeloma is not a quick fix but is something I am living with and enjoying life .
Hi David
You describe wonderfully the turmoil and chaos we all feel when given this diagnosis. Myeloma is a complex disease so it takes some time to understand the relative significance of our individual symptoms and test results, as well as dealing with the total disruption of our old lives caused by treatment and monitoring.
However most of us do go on to assimilate myeloma into our lives, our disease is not apparent to others and we can enjoy life again.
When we are diagnosed we are told that myeloma is incurable but treatable. It can take sometime to appreciate that the “treatable” bit is more significant than the ” incurable”. Myeloma research has been remarkably successful during the past 20 years, and new treatments are being approved by FDA every few months, NHS treatment is improving every year. There are an increasing proportion of us surviving for over a decade or even 20 years, and younger people such as yourself tend to do very well.
Its not a good idea to look for survival data on Google, much information is seriously out of date. Even GPs can give misleading information- mine told me I could be dead in 3 months, 4 years ago, and currently I am absolutely fine, no one would realise I have anything wrong & my life is pretty ‘normal’.
Expect to give a year over to myeloma treatment but after this there is every reason to hope for a good life again. You are not on a one way street.
Hi Davidw
I can remember well the shock of the initial diagnosis! My husband was diagnosed in March 2018. Our whole life changed that day! Or so I thought. After treatment and a stem cell transplant we led a relatively normal life…OK he’s only recently back on treatment after over 3 years in remission but already his treatment is working and his Myeloma is undetectable. Lots of great developments and positive outcomes for folk. My advice is remember your partner is also on a journey. I also have a cancer diagnosis. I find it so much more difficult coping with my husband’s Myeloma than my own diagnosis. You are not alone on your journey and thete are still many happy days ahead. Take care
Hello and thank you so much to those of you who have replied. It is very helpful to hear your stories and your tips.
Rosary, thank you for the optimism and the warning about dexamethasone – a few people have mentioned this, so I will see how I get on.
Likewise, Mulberry, thank you for the optimism and the reminder to focus on the treatableness of it.
And Rael, firstly sorry to hear of your diagnosis too – you’re right, my partner, Emma, is on this road with me and we need to focus on the happy days ahead.
Thank you so much everyone. I’d love to hear more stories if anyone else feels able.
Thank you,
David
Hello David
I was diagnosed when I was 48. That was back in 2006. Three treatments since then with each giving me full remission. That is were I am now. Many new treatments since I was diagnosed and many to come. I intend to grow very old very discracefully.
Best wishes
Kevin
Hello Kevin,
Thanks for that story – sounds like you’re doing very well. Growing old disgracefully sounds ideal.
David
Hi David,
You’re doing really well to talk about your shock and anxiety here, they can be bigger mountains to overcome than the myeloma itself, or the treatment.
Myeloma UK have recently trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD (very similar to your upcoming treatment, but without the daratumumab) and a stem cell transplant.
You’ll get lots of friendly advice here, and the main messages are strong and clear:
– This is a treatable disease that you can live with for many years.
– It’s a rollercoaster. Being diagnosed with cancer is a shock, and the speed with which you’re put on chemotherapy when you’re reeling from the diagnosis is difficult to keep up with.
– NHS teams are good at treating the myeloma itself, but do push them for answers and help with the associated issues such as bone pain (which you clearly know about) and peripheral neuropathy.
– Medical advances have been very effective in recent years, and there’s exciting new treatments which we expect to see in our lifetimes.
Like Mulberry, I was told that myeloma patients are expected to live for between 3 months to 3 years, this wasn’t qualified in any way, e.g. if that’s with or without treatment. I felt like jumping off of a cliff rather than facing chemotherapy, but with care and support from my wife, friends and the NHS team, I got through it and would face it again without too much trepidation.
Life is worth living, OK there’s some things that I don’t do now (e.g. running, or lifting anything more than a few kilos) and I have some bad days, but mostly life is as good as it was before my diagnosis and I’m fitter and more active than many people my age (I’m only 3 years ahead of you!) My remaining aches and pains from bone damage are less severe than the general age-related aches and pains of many of my peers.
Do make good use of this forum, and the Myeloma UK infoline, remember to enjoy the things you’ve always enjoyed, and look to a time beyond the treatment when you can get back to full life.
Kevin, glad to hear that you’re in a period of remission, and long may the disgracefulness continue! 🤣
Rael, sorry to hear of both your and your husband’s situations, but so glad that you’ve got each other and that you can see positive outcomes from treatment. Life is a mystery and throws difficulties at us, it’s good to really take hold of and appreciate the good things that come our way as well. I’ve become more open, more direct with people, more focused on taking opportunities and making the most of life, being able to ask for help and also to offer it.
Best wishes,
Rich 👍
Thanks Rich – those are very encouraging words. I’m really glad that life is in many ways back to normal for you and I look forward to that for me too.
David
Hi David,
I am also one of the peer discussion volunteers. I am sorry to hear of your diagnosis, but as you might have already gathered, there are quite a few of us living with the disease. I was diagnosed 3 years ago and am relatively fit and well. No one likes the word cancer, but there are some very good treatments available with good outcomes. I hope that the regime that you are on is able to allow you to continue as near as normal a life as you can manage. Just take one day at a time, and one thing at a time.
Keep us updated as to how you are getting on, and we are here anytime you need us or would just like to chat. Onwards and upwards!
Regards, Tony
Hi David,
Another of the discussion forum volunteers here.
I recall the shock of my dad’s diagnosis back in 2013 which we assumed was just a muscle pain then it seemed it suddenly went from that to pneumonia, hospital admission and the MM diagnosis-the dreaded C word… and hearing it was a terminal cancer was a big blow. However, as many have said, you soon realise that it is a very treatable cancer and I always remember one of my dad’s nursing team saying it was one of the ‘best’ cancers to have if you have to have one, because of the huge advances in research and treatment and this has stuck with me.
Dad had dexamethasome, thalidomide and cyclophosphamide first time which he luckily had few side effects from, aside from the previously mentioned ‘roid rage as we ‘affectionately’ termed dad’s mood swings from the dexa and his ballooning from it too. Following the SCT it took probably a year for his energy levels to return to normal (he was always zipping around and out in front on walks prior to MM so if you didn’t know him, you wouldn’t know anything was amiss but as a family we could see the time it took to get back to normal). I’d definitely echo the previous response about taking as many notes as possible. I took a notebook along to all of dad’s consults (and still do!) and note everything down so I can refer back to it or look things up where needed and ask as many questions of your consultancy team as you need. They were a huge help and support for us during those initial months where you’re still trying to process what is going on.
Dad had 7 years of remission following his recovery from his SCT and lived a pretty normal life during this period. He’s currently undergoing treatment for his first relapse. Initially it was treated with Daratamumab and Bortezomib – unfortunately he did not get on with this combination at all and was quite poorly through it and he’s now on a different mix and much much better, so if you do suffer side effects make sure to flag them to your team as they can help where they can. It is so nice to see dad feeling more himself even though he is still undergoing treatment. Best of luck with it all and keep that positive attitude going, it will definitely help 🙂
We are all here to support you throughout the journey, so don’t hesitate to come back to us or call the infoline on 0800 980 3332 if you have any more questions/concerns. Take care x
Hello Tony and kh0305,
Thank you both for your advice and kind and positive thoughts.
Taking it one day at a time seems to be the best advice out there really. It is all I can do right now, for sure.
And that’s good advice about taking a notebook too and making notes. I’ve already misunderstood a few things the consultants have said to me which them my partner picked me up on after.
Hope you’re all well and thanks again,
David
No problem David. Good luck with everything and keep us posted on how you’re getting on x
Another good thing to do is have a notebook handy and when you think of a question to ask your consultant or specialist nurse write it down straight away as you will probably forget what it was when you speak to them., chemo brain and all that!
Regards Tony
Thank you Tony – good tip!
You must be logged in to reply to this topic.
