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Hello,
My story in a nutshell:
I was being ignored by GP practice back in November after I got back from a family holiday and was too tired to get out of bed for 2 days. Eventually got to A&E via 111 (who took me reluctantly.) I spent a few nights on the kidney ward as I was on about 12% and they could not figure out why. Then at about 4.30PM on Friday the oncologist swooped in an took bone marrow samples.
By Saturday I was on a cancer ward and on VD. Unlike most I was familiar with MM as my father passed this day last year of the disease. Unlike my father I have light chain MM. He was in his late 80’s, I’m barely into my 50’s
I responded well to initial treatment and have started Cycle 5 (of 6) of now VTD. And I THINK I have an appointment with the Stem Cell folks to discuss a proposed double ASCT soon. Side effects have been tolerable. (It’s a Dex day hence the trouble sleeping tonight.) Like others have reported tiredness is the main problem but no major complications thankfully.
I met with my consultant (whom I do like and feel confident in) about a month ago and he told me My cytogenetic were finally ready and unfortunately I have no less than three hi risk markers (hence the Dual transplant). Though I am very sure he’s happy to see me, I’m having a hard time getting another meeting with him to discuss further.
It is very heartening to read stories of people living with the condition for many years (or at least it was!) but right now it does not seem to be my fate.
I can see there is a huge amount of research and new drugs coming on stream all the time and clinical trials open. However it feel like they are almost all for relapsed or refractory sufferers. My concern is that my prognosis is that I just don’t have much time left to me to relapse so I can access forth line treatment.
Overall I think the NHS are doing a fantastic job. I am finding the disconnected nature of how they work frustrating but as I learn the system I continue to chip away. The literature and those I talk to say how individual a disease MM is and as such treatments are individual too. But right now it feels like there is only one option on the table. I’m sure VTD was the right thing to do but it’s deeply frustrating to know other options in the system that are reliant on me failing with my current line of treatment. (Exactly how refractory and relapse are defined is on my list of questions for next time!)
Sorry for the long post. Be delighted to hear your thoughts.
Thanks,
Bren.
Hi Brendan
I am sorry to hear that you have have been recently diagnosed with light chain myeloma. It is something that none of us want to hear. I was diagnosed at the beginning of 2013 and had the standard first line treatment which seems to have worked well. Like you, fatigue is still an issue.
Your remarks about the start of your myeloma journey seem all too familiar with most being diagnosed late.
As you say yourself, myeloma seems to be very individual so it seems difficult to generalise, the medical specialist are probably in the best place to know what is best. There seem to new novel treatments coming along all the time so plenty to be optimistic about. Good to hear that you have not had too many side effects, the general rule seems to be to try and keep as fit and healthy as you can.
Hope this helps.
David
Hi Bren,
I thought I was reading my own story when reading your post, so can relate to your situation. I was diagnosed last June with ppcl myeloma it is the most aggressive form of myeloma, I have total kidney failure and am on full time dialysis as a result. I did 8 cycles of pad chemo and am now off treatment and in plateau. No transplant for me as deemed too high risk, hopefully the doctor has got something lined up for me at my first relapse.
I personally have no relationship with my hematologist, it could be done via email as I receive no real comfort from seeing him face to face, it seems more like an academic exercise than medicine, I don’t think it is like that for everyone but it is my experience.
The good news is that despite the seriousness of my personal situation there is hope of prolonging my life using the drugs that are currently available in the uk. I am just enjoying being off treatment, especially the steroids as I was quite difficult to live with while on them as my husband will testify to when he eventually comes out of the bunker he has been living in to protect himself from my huge mood swings L.0.L
So hang on in there there is still joy to be had no matter what.
Best wishes
Cassidy
Hi Brendan,
Like everyone else, I’m really sorry to hear of your diagnosis. I’m about a year ahead of you and in my early 50s too. I think many of us have a difficult time at diagnosis as it’s still quite a rare cancer and the NHS is I suppose understandably on the look out for the higher volume problems. Sorry to hear too tht your father had it though. I suppose as you say tht meant you had more awareness.
I don’t have light chain or high risk myeloma but I’ve done a lot of reading just like everyone else. My consultants have been brilliant but I suspect I’m not the easiest patient as I challenge them constantly. I think this is essential as there’s no cure and different consultants have different views on treatment. Yes the NHS NICE guidelines govern treatment but when you look wider, especially to America where the top myeloma consultants tend to operate, then it’s clear tht one size does not fit all. I suppose that’s obvious given the individual nature of MM. So I get rather grumpy when the NHS NICE guidelines try to apply one size to all.
I found this article really helpful:
https://onlinelibrary.wiley.com/doi/10.1002/ajh.25117
It gives enough information for an uninformed amateur like me to understand and use the information I get from my consultants to think about my situation. You’ll be able to identify the ‘high risk’ markers and also consider the treatment options.
But whilst I’m not high risk I am currently on a path towards allogeneic stem cell. I wouldn’t recommend treatment to anyone, but I would just say tht different consultants have different views about treatment. But I think it’s recognised by most tht allogeneic stem cell should only really be considered for high risk.
The last point is to make sure your consultant is a myeloma specialist or at least tht you have access to one. I took a second opinion at one point from a recognised MM specialist to make sure th8ngs were going in the right direction.
Anyway, hope all tht helps. Sending positive thoughts your way.
Stay strong buddy
Shaun
#myelomawarrior
Hi Shaun, fantastic reply, most informative. Just wanted to wish you the best of luck with your transplant, have you been for “the talk” yet. My transplant was cancelled but I did go through the consultation with the transplant team. My mind was in a total whirlwind for weeks afterwards trying to make my mind up about whether to have it done, in the end I decided to go ahead but heart damage caused by doxorubicin put a stop to it. In retrospect I think they are just trying to test your metal by telling you all the things that can go wrong but in reality it is generally a safe procedure with good results. I look forward to hearing how you progress with your treatment as it’s good to be able to read the variety of patient experiences.
Best wishes
Cassidy
Hi Cassidy,
sorry to hear that allo won’t be possible for you now, especially after making a decision to go for it. I know how difficult that decision can be to square. I went through about 6 months of indecision mostly fuelled by the Treatment Related Mortality figures (15-20%) and the strongly opposing view from the US that ASCT followed by maintenance is now the right course of action.
My consultant is a transplanter and has been brilliant. Yes, he’s put the scare stories out there and we discuss the risks every time I see him (about every 6-8 weeks). But my mind was made up a few visits ago when we were discussing TRM when we told me his rate is currently 3%. We explored this a little and it turns out that he achieves this through careful patient selection. So my ego was sold. Only trouble now, of course, is that I recognise he could have been deploying basic psychology on me – making the case for an elite club which, as it happens, he’s willing to offer me a place in. I recognise I can be very cynical. And I’m still sold on allo so hoping to stay fit and healthy to get there. I’m due ASCT in Apr/May so long as IRD gets my levels down.
I couldn’t agree more that there are lots of treatment options open if allo isn’t an option. In fact, the Harley St doctor that I took the second opinion from told me that he would only recommend ASCT followed by maintenance. His point being that maintenance will keep me alive long enough for a cure to be found which as a course of action is much less risky than allo. He clearly has a point and its the same one that most of the big 8 in America subscribe to. Allo is definitely out of favour right now unless you’re high risk or young (I’m neither).
Anyway, good luck with your journey. Sending positive vibes your way and especially to your husband as he deals with the steroids too 🙂 You’ve got to laugh haven’t you.
Shaun
Thanks to all for the replies,
@ Cassidy thanks for sharing – I almost feel guilty for not being in more pain! But it’s also hard to square my relative good health right now (Kidneys are in the normal territory right now) against such a poor prognosis. And the silver lining in all this for me has been spending more time with the family as I’m off work. My wife in particular who is being fantastic. And learning to say “yes” when people offer to help.
It helps I think that I only take steroids twice a week. I had a real hard time getting of Prednisolone a few years back for an unrelated ailment. The reaction to the drugs seems as individual as the disease.
@ Shaun. Many thanks. I’ll go through your link and have a good read. I too have done some research and as I read it the consensus view is ASCT will not be needed in the future but right now it’s the best hope for deeper remission if you can take it. There is some debate about double, some US Oncoligist feel it’s not needed – but more do. Indeed the last thing I read was an Oncologist saying dual should be default for high risk and recommended for medium risk.
All the sites have agendas so it’s important to me to bear this in mind when reading. I’m sure you are already all to aware of this.
One thing that strikes me about all the research is that it’s all based on very small numbers of patients – would such small numbers be acceptable for more common conditions?
Oh and my consultant is a “Myeloma guy”, and his last letter states that HE consulted the Myeloma lead for the region about my case, in effect getting a second opinion for me.
@ David thanks for the good wishes – doing a fair amount of walking and eating like a horse at the moment!
As I say, due to meet Transplant team later in the month, so I might report back in then.
I truly appreciate all the replies it’s great to hear other stories happy and sad to get a sense of balance.
Cheers,
Brendan.
Dear Brendan, thank you for your reply. I was so pleased to read your kidneys are operating normally and wanted to assure you that I am in no pain whatsoever, dialysis is just a boring part time job with free sandwiches and custard creams including in the package L.O.L
I am very lucky that my husband has been able to take a career break to look after me and we have spent 9 fantastic months spending quality time together, it is the silver lining in a dark cloud.
I have a saying that “it doesn’t matter what disease you’ve got, its the fact you’ve got it that matters” we all have our own challenges but share the same uncertainties of having myeloma. Please reach out for support from your fellow travelers whenever you feel you need it. I am happy to lend you a listening ear at any time.
Sending you all my very best wishes
Cassidy
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