I am 48 years old (by three days) and I have been diagnosed with Multiple Myeloma following a routine blood test 3 weeks ago. All happened so quickly and I started my first cycle of treatment just over a week later of velcade, thalidomide and dexamethasone. I’m still waiting for more results from the biopsy today when I meet with my consultant at Oldham Hospital’s Haematology Unit, but I’m hoping nothing else has been or is happening to make things worse inside my body. I suppose I am at a bit of a loss or rather still in shock and feel that it would be great if I could speak/converse with someone who has been through this. I am looking in to the Cancer Buddy Scheme and my local cancer support groups in Bury but with the time of year (Christmas etc) not a lot is happening and no-one is available. I realise this is a big ask but if anyone could get a chance to get in touch it would be good to hear about your experiences and/or what support avenues you accessed.
I like you was diagnosed when I was 48. That was 10 years ago. Since then it has come back once. I was treated both times with CTD and have had 2 stem cell transplants. Each treatment gave me full remission and am currently on no medication and having a blood test and see my consultant every 6 months. Am happy to answer any questions (if I can ) you may have. I have never taken any technical interest in it, am just content to see the Doc and let him tell me where I stand. That is at the moment in full remission with my next blood test and consultation in January.
My wife was diagnosed at the same age, then spent 2 years being monitored every 6 weeks or so. She then went on to treatment this time last year, VTD, followed by a stem cell transplant in September. She is now in remission.
I remember when we were first told, it is a very confusing time, trying to absorb and understand everything. Forget about protein levels, bloods, etc, it’s the bit between your ears is the hardest bit to cope with. We decided not to tell others (apart from our sons) initially mainly because we found it hard to mention the word myeloma or cancer to ourselves let alone anyone else. However after a while we adjusted to this and are now much more comfortable talking about it.
It is a huge adjustment, but with the support of others you will be able to get through it. As you will read on here, this is a marathon, and there is no right or wrong reaction to it, or whether you should share it with others, it’s an individual choice with whatever you are most comfortable with. Edel choose “on a need to know basis”, as she didn’t want to be overwhelmed, whereas I did more research initially and passed on information at a time when she felt comfortable to know a bit more.
Our tip would be to give yourself time.
Good luck and take care.
Thanks for your replies. It’s really good to hear some positives from both of you.
I met with my consultant today and just want him to crack on but I had to ask him about figures and protein levels to try and get some understanding of it all. Not sure how much it sunk in but I’ll have to be careful that I don’t get fixated on numbers as if they do go down or go wrong it will no doubt get me worried. Something for me to focus on.
One thing I have found hard today is feeling very weak. It hasn’t stopped me doing anything but walking the dog took forever. I’m usually very active so I guess the gym and a swim are out for a bit until my infection risk reduces? Do you have any suggestions about what I should or shouldn’t do re exercise/wellbeing? I’m thinking about accessing some yoga sessions or mindfulness which should help and I intend to go to one if the Myloma UK info days in the new year. Any other thoughts would be appreciated especially support for family members too. My wife Lynn is really strong but she needs support too.
I’m also getting strange tingling in my mouth and around my teeth, and sometimes I seem to have a film over my eyes-I can still see but it’s a bit like a haze/different shade of light. Consultant said it’s normal. Should I expect much more?
I’m sure I have loads more to ask but it’s still a real mine field and not sure where to start.
Thanks again for your emails.
Hi Richard, I was 50 when diagnosed at a critical stage of kidney failure – shock diagnosis etc – had 8 cycles of velcade/dex followed by SCT at xmas just over a year since diagnosis and currently still in remission and drug free. Kidneys took a big hit gfr now 32 but do not hinder my life tho will be problematic with further treatments and infections. We are all different but I will briefly give you my take/experience of it all. Firstly, with a shock diagnosis that took a long time to come to terms with we chose not to tell others – my daughter was 14, I carried on as normal tho everyone knew I had a “kidney” issue which explained away treatment also. We are all different but we needed time to come to terms with it and get to grips with it without the intrusion and questioning of others. I told my parents and one sibling just before harvest/SCT – by this time I was confident, accepting of it, well versed and was able to be there for my aging parents who were broken by the news and rightly, or wrongly, needed me to constantly show them it would be ok (this was draining). From a year of privacy, which meant we tried to lock MM away in a cupboard as much as possible and carry on as normal, came the draining part of “how are you” anxiousness of others , constant reminder of it and finally a very small circle of people who half I am no longer in touch with as I felt they could not look at me without pity in their eyes and a couple which I am very close to now. Highs and lows. I am aways mindful to say you must choose when you tell people as once it’s out of the bag it can never go back in. As I hid this MM away it helped me carry on as normal and throughout treatment I carried on with the gym, swimming (different consultants advise different things – I think mine is the “do whatever makes you happy” type, playing tennis etc. The only time I stopped playing tennis was when the hickman line was in pre SCT and I was back to fitness 3 months after it. The more tired you get I advise you to take a brisk walk, do something you enjoy, it will make you less tired and increase your energy levels (well until you get to bed and then I was dead to the world – a happy escape). Your body will adjust to your cycles of treatment and I found side effects more extreme in the first month or so and then ok. This battle is won or lost in the mind and, as you have consultants advising of treatments, it is not essential at this stage to learn everything you can about MM – what is essential is to decide now how you choose to live your life from here on in. The only thing you have control of are your emotions – cancer, like bad hair, won’t make it a bad day..only you can do that by how you choose to respond to the day ahead. I always try to remind myself “Be miserable or motivate yourself …it’s always your choice”. Do not panic now as you are in this for the long haul so the area to concentrate on is your mind – this is where the battle is really won or lost. From the moment you got your diagnosis life will never be the same, not necessarily worse, just different, so don’t try to get over the treatment and resume life as “normal” because now you need to create a new normal – hopefully a better normal where you live for today, live in the present and do the things that you want to do where possible. I have tried yoga as a calming influence, I love mindfulness (tho am rather lax with it now in remission) and this really got me through the hard times, along with exercise. Exercise kept me sane and helped me re-energise, boost my mood, feel normal…also helped me punish my body for letting me down! Think out of the box and now is the time to think what you have both always wanted to do but was saving it for later…new hobbies, new experiences, new environments – all this will help you focus on the positives. “Life is not a matter of holding good cards, but of playing poor cards well”..oh, one of my coping mechanisms was collecting motivational quotes! which became my mantra at various points and I still carry my little note book round with me but refer to it much less so now. I also bought lots of positive thinking type cancer books..and I took bits from each one but unfortunately the names/authors escape me now as I used to secretly read them and then throw them away lest they be discovered. Start as you mean to go on and always remember “You can’t control what happens to you, but you can control what happens in you” – the mind is like a muscle that needs flexing to create good discipline and you sound as though you are already formulating your life plan (both of you). This never goes away but you will learn to live with it like you would a troublesome old friend – I say friend because Mm is part of me and my DNA – as much as I don’t want that to be the case I do accept it for what it is. MM is a real mind **** but is doable as you will no doubt find out as time goes on and on..
Thanks for getting in touch and for giving me an insight about your experience Rebecca. It’s a big help to hear this and has put me at ease massively which I’d like to thank you for.
I suppose I’m still at an early stage of things and still trying to get my head round it all. One thing is that I am staying positive-as well as I can be anyway, although yesterday’s Christmas festivities were very low key – I ate a lot but only had one small glass of wine. From someone who likes a few at the weekend and during time off it was a bit of a shock. I kept thinking – if I drink will I go backwards, will my kidney levels start dropping again etc etc. But at the same time I just wasn’t in the mood. One consolation was waking up this morning on Boxing Day without a sore head, but the difference is that I feel very weak-not sleepy but just weak. I’ve read that this is probably/possibly an effect following the VTD a few days ago?
I do have a really good family and supportive friends and I have been open with all of them about my situation, and I know they will be with me for the long haul although I worry about my wife. She’s been a rock, still is but I so think she needs to off load too, so hopefully we can sort something through the Myeloma UK site soon or through Macmillan who check in with us each time I go for treatment, which is good.
Can I ask you about how you carried on with things in general during your early treatment days? I’m a teacher by trade and love my job, but my role in school will be a real struggle, but I want to do as much as I can, even if I’m doing stuff from home or out of the classroom. Did you have to take a lot of time off work? My mind at the moment says I’ll just take one day at a time. I’m also usually very active gym/swimming wise. Dr has said to hold fire on this for a few weeks just to make sure my immune system gets back on track, then I can go back, but it will be like starting afresh again, if I can manage at all. My dog is certainly getting far more walks than he normally gets which always makes me feel better each time, even though I have to drag myself up sometimes. I’m keeping a log of how long each walk takes as well as keeping a diary. All new things but it helps in a funny kind of way.
Once again, many thanks for your email. If it’s ok I’ll be in touch again soon. I’m sure I’ll have more questions to ask.
Hi Richard, I should have said in my post I am now just over 4 yrs since diagnosis. Regards work I did 2 x 12 hr night shifts and then 6 days off. I never went back to nights as I could not afford to knowingly drag my body down and changed hrs to days and a different shift pattern. I had 6 months off since diagnosed in hospital because :- kidneys very dodgy for long time, night work, total shock and didn’t want to go to work and just wanted to focus on getting fit, strong n healthy to fight this. My dr thought I should go back to work as a distraction but I needed a long time to get my hard round it n wanted to try and be physically strong. I only had velcade n Dec due to low kidney function and I believe thalidomide is a nasty little drug to add. I got increasingly tired as cycles went on but because I wasn’t working I could play tennis, rest leisurely, go for walk..I admit to exercising as much as I could as a coping mechanism and I like it. I never got any infections over winter which I attribute to not working – as a teacher you may be susceptible to a germs environment? I know others who just carried on working throughout but then i wonder if they really focus then on how to tackle this well? It all depends on how much you love your job/stress levels. You are likely to experience chemo brain which I think is akin to adding 30+ yrs on your brain – I was quite foggy at times but then who knows how much internal stress is to blame for general slowness also – certainly not as sharp and alert. When I went back to work which was nearing end phase of first treatment it was hard getting up early but I was ready for the distraction and mentally good (I work taking emergency calls do I need to be alert) and enjoyed it but it was draining. As you are logging your walks it may also be useful to log your moods through treatment cycle also. This will enable you to plan life well around the ups/downs – when I was on Dex it was like being on speed I would talk fast, have 3 conversations st once and never listen to any answers! Amusing at first but then I realised it was better not to plan social meet ups then but use my energy on jobs round the house etc. As time went on and I felt down/weepy after Dex wore off I used to plan little treats etc. Better to be in synch with the treatment toils. I have been told men are much more grumpy/angrier on Dec than women due to testerone levels and if this is the case then ensure your wife has done me time catching up with friends or doing her own thing – it is useful to both of you to log/recognise the cycles. With regards holding back on the gym unless you are neutropenic it should be ok and if it’s something you enjoy I would just do it. All consultants say different things and can be over cautious – the only thing I stopped using was the steam room. I did have a bp machine at home and developed atrial fibrillation and rapid heart beat for 2 days from taking Dex – I did not play tennis or run on these days and everything resumed ok again after 48 hrs – so be aware of your body changes so you can adapt your routines.
I am 38 and recently diagnosed (April 2016). It’s taken me a while to get my head around everything that has happened over the last 9 months. Broken vertebrae, hip pinned operation and stem cell transplant in the last 9 months. I now after my stem cell transplant which was in October feel better than I did before my myeloma was diagnosed. I had 18 months of excruciating back problems which were unexplained until diagnosis.
I can say that the support of family and friends has got me through this last nine months and I couldn’t have done it without them especially my husband who has been an absolute rock. I sometimes think we forget the ones close to us and what they are going through.
I too am thinking of going to the Bury Myeloma support group in Jan or Feb so may see you there. It would be good to speak to someone who is going through the same experiences and is local.
Please get in touch if you would like to ask any questions of my experiences over the last 9 months.
Hi Richard, I hope the Bury Support Group have been in touch with you by now. I wanted to go to their meetings but my husband who has myeloma didn’t want to go so I learned all I could from this forum which was so helpful to us after he was just diagnosed. I used to tell him all the positive things I had learned. He was an IT Lecturer and his work let him work part time in the beginning and do some work from home but after his SCT his college rescheduled his job and offered him redundancy (about a year’s pay) and he took it. Best thing he has ever done as he now does not have the stress of work and does things he enjoys – and he occasionally makes my tea. You have the same Haematologist as my husband I think as he too is at Oldham (Dr Allameddine) and he is amazing. My husband had a phobia of hospitals before diagnosis but Dr Allameddine changed this. He is nearly 3 years in remission now following 6 months of chemo and a stem cell transplant and doing ok. He has a Zometa infusion to strengthen his bones monthly now and bloods and sees Dr Allammedine every 3 months. He was originally diagnosed with fractures in his spine and it took 5 months to get to diagnosis and he had to endure 5 months of painful physio for his “bad back”. Once he started chemo the pain improved and after 8 months he could lie flat and sleep in a bed again. It was awful at the beginning and you have so many questions so I hope you find Bury support group helpful.
Best wishes and good luck with your treatment,
I was diagnosed at the age of 41 last April. We all know what you are experiencing. Trust me, things do get easier as time goes on. I had many bad days at the start but thanks to Rebecca and others giving me advise, in time things become more clearer.
I finished my CTD treatment back In June then had a break & had my SCT at the end of November. I read up on the SCT & it so stressed me out. If your going for the SCT I personally found it ok. The worry was the worst part but nothing didn’t happen except for a rash which fortunately didn’t itch. Everyone is different but please keep a open mind, as I have felt worse having the flu then doing a SCT. So if you read any bad story’s on SCT keep a open mind… I’m now in the process of finding out if I will be doing a Allo transplant with in the 6 months, not sure yet what is happening but we all have choices regarding treatment for Myeloma which is a poisitive thing.
Regarding work, just do what you feel you can do.. your body will tell you.
All the best and good luck
Thanks for your messages and for your kind words as well as your stories. I’m staying positive all the time – as much as I can be anyway. Had my second dose of VDT today on cycle 2. Consultant was pleased with how things should go as nothing else found from bone marrow sample, apart from the usual nasty stuff which is causing the problem but he tells me is normal. By the way Angela – Dr Allamedine is my consultant and in the short time I have known he puts me at ease every time. Today we weren’t officially down to see him but he came and took us in for a chat to see how things were and then gave us the updates. Made sure I was still drinking lots of water-3 litres but I tend to try and drink at least 4 or 5
One really good thing about my treatment is the improvement it does give my back. I could live with the pain before the diagnosis but it takes another big thing away and raises my positivety levels even more. My back pain in the past has always been sorted out and gone away but for the few weeks before diagnosis I noticed this pain was a lot different and with it being more in my pelvis I just couldn’t work out how I had done it or where it came from- now I know. My chiropractor said it was probably from not doing enough stretching and slouching too much.
I haven’t been to the Bury group yet-first meeting is on Monday but I have a treatment day so may not make it. Perhaps I’ll see you at the next meeting in February Jill. We were going to go to the Bury Cancer Support Centre but sadly they are closed as they had a flood on New Years Eve. Lots of damage done. So I’ve booked in for a meeting at the Oldham equivalent next week – to talk about some alternative therapies/counselling which will be useful I hope.
As for work I’ll probably do what you suggest Dean – see how it goes – day by day. I did quite a bit the other day from home and it was good to use my brain in this way and actually forget what is going on inside me. A lot of my colleagues have said I should forget everything about work and they all mean very well which is great but I feel that when you’re on the other side it is about trying to feel as normal as you can and if a bit of work is needed for this I’ll do some. But this could change if I have a bad day like last week. Forgot to mention- had a temp spike and had to go to A and E. Luckily I was given some fluids and antibiotics and then released on the same evening as temp went down. I knew something was up as I was so lacking in energy pretty much all day.
Thanks again to you all. Best wishes and good luck you all too. I’ll be back on again soon.
Your quote:– ” although yesterday’s Christmas festivities were very low key – I ate a lot but only had one small glass of wine. From someone who likes a few at the weekend and during time off it was a bit of a shock. I kept thinking – if I drink will I go backwards, will my kidney levels start dropping again etc etc.”
I was diagnosed in summer 2015, with light-chain MM and underwent the full 8 cycles of VTD. Like you, it was a shock (to say the least) at diagnosis, but the one thing I’ve learnt over the past 18 months, is to try and keep a balance with the ‘old life’. Obviously, now a lot has changed. Apart from all the unknowns, the clinic visits, the blood tests, possible FISH, MRIs, Xray tests, it’s obviously necessary to try and manage your ongoing situation. I for one am damned if I’m going to let multiple misery take over my whole existence, and as a previous post suggested, it’s a lot to do with mental attitude. My father was from the Emerald Isle and my mother from a western European country that prides itself in its beer festivals (need I say more), so you could conclude that yours truly has some affinity to the odd pint and glass of wine — and in that sense you’re not wrong, and frankly, since diagnosis I have not cut out either, and look at it in context, ie if I didn’t take my wife out, or go down the pub with my sons, or friends, I’d be pretty much a miserably old xxxx. It’s just one of the ways I try and maintain a life balance. But I entirely accept that everyone is different.
In terms of your treatment, and job. I was never sick, or had bad tingling in feet or hands, but the VTD treatment did affect my tummy, and after the final cycle of treatment, this effect did last for some months, but it was manageable with Imodium. After loads of tests, nothing nasty was discovered, and it was concluded it was just an unusual and particularly difficult result of the treatment. So in all likelihood, you will not get anything that lasted as long as mine did.
I never underestimate the work load that teachers have, their dedication… etc. And the only advice I can give you is to simply see how things go. I’d say it’s pretty impossible to plan out every eventuality at this stage (unfortunately). Every persons’ reaction to treatment is different. You’re much younger that I, and it’s very possible that you’ll simple sail through the whole lot.
Very best of luck, and keep us all informed of your progress,
Peter – a man after my own heart! I suppose as it’s early days I am still very cautious about various things (alcohol) but still keeping up the positive mental attitude. Mind you I had a beer this afternoon whilst cooking and watching football. A regular Saturday pastime when we don’t go out. It did feel good and right so I’m sure I’ll be doing more of this and other normal things.
A lot of what I manage to do – work, play, normal stuff – will depend on the effects of the meds etc but even when I struggled the other week I didn’t let it phase me and did what I’d planned to do, even though it was a struggle – all part of my master plan to make sure I beat this. I also have a lot of support from friends and colleagues as well as my wife Lynn who have told me that I will get through it all-PMA from all sides.
Thanks for your support Peter. I’ll be in touch. I’ll let you know when I move on from one can to two or more!!
Richard, I should have said — it’s possible that your initial VTD treatment will knock your immunity right down. I had a load paperwork (when on VTD) that said about trying to minimise crowded places/swimming pools etc. So even if you feel good, mixing with the kids at school and the other teachers needs to be considered I think. Maybe it’s best to talk to your medical people about this.
Hi again Richard
Even though my husband has been nearly 3 years in remission he still gets bad chest infections and colds at winter time so he definitely could not have carried on with working as a lecturer in a college full of students. He was 55 at diagnosis and our daughters had been through Uni and now don’t live with us so money pressures were off us a bit but it would have been so much harder had he been younger at diagnosis. He still loves a pint by the way Richard and has never not drank (unless it was just after the SCT and he felt nauseous). He also does a bit of marking in the summer time for Edexcel Examining Board (now Pearsons) so keeps his hand in there. We go on holiday as we did before although insurance a bit more expensive but we can now go out of term time which is great. My husband has never been into fitness so he isn’t missing out on anything there as well but spends a lot of his time writing songs and playing his guitar. Life is different and we carry on as before as much as we can do. Graham never wants to join any discussion forums or facebook groups as this reminds him he has cancer and he just takes his tablets (Myeloma XI maintenance) and gets on with things as normally as he can.
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