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..
Best wishes,
Rebecca
Oh dear, that all just sounds like cutting corners and saving money at a time when you don’t need it. Well hang on to the fact that if it gets too “disruptive” you’ll be on a side ward. The only thing with sharing a ward is everyone does tend to hog the shower/toilet (women do anyway) so I wouldn’t/couldn’t wait to use it. Perhaps they are giving you worse case scenario and if you miss the bathroom due to other people just kick off – or better still get family to kick off on your behalf. On an open ward at this time of the year even if patients are well there’s a good chance their visitors will have a cough n sniffle. Any sign of germs enlist family to shout loudly – you shouldn’t have to but they are putting you in a precarious position. At Leeds in isolation – visitors etc were gowned n booted before they entered as were staff. How can there be such a big difference in protocol? I really don’t understand it. I know in the US they are often day patients but they go off to a hotel room/flat which is free from a flow of visitors etc. Anyway, they would not knowingly endanger your health so perhaps this is the way forward and whilst it is not the best scenario for us (and the others on the ward) it is just something we will all have to endure but…again….a short period of time in the great scheme of things….you’ll probably be out in 2 weeks…focus on that. Hang on in there and look to 2017.
Rebecca
Hi Dean, sorry you’re not in yet – I had the same problem at Leeds – I had to have the chest port in before I was on the official “ready” list and had to phone up each day for a bed. This started early October – so could not go the gym or play tennis due to chest portal and actually went in mid December so was in at Xmas. I had not been on treatment since the July and in the end my consultant phoned Leeds and kicked off at the wait and lo behold that night I had a call at 10pm to say a bed was free. I was also advised by Leeds nurse to call every morning for a bed so they know you are ready and wanting to go in?!? which I didn’t really as every time I called they said they had me on the list and I would get a call when a bed was free. My nerves were in shreds waiting every day knowing xmas was looming etc. Rightly or wrongly I would say shouting the loudest and also getting your consultant to call them complaining might make all the difference. The other hospital I could have chosen actually gave you a set date and they adhered to it – but it was smaller and didn’t do as many as Leeds (Leeds is like a conveyor belt system and I guess very efficient with resources). At Leeds I was told lymphoma patients took priority as they were more ill – so that makes you feel a bit more humble as well. I have heard some on open wards for the first few days only – wouldn’t want to be in a shared ward /bathroom after those first few days..am sure you will not be in open ward for long. I carried on working until the day I got the call so that filled in some of the “anxious” time but it was pretty awful not knowing when it would all start. Until you are in try and enjoy impromptu family happy stuff/treats as much as you can as it’s a strain for everyone when you are in so try and make the most of now – I know that is easier said than done and I think I deserved an Oscar for acting during this nail biting time. Fingers crossed.
Rebecca
Hi Andy,
Sounds like you need/deserve another holiday! Sometimes you read posts like this and think wow you’ve been through the mill and come through it and all’s well..great …but when you reread it and, for some, remembering time on treatment, it is one massive helluva trauma to go through from start to finish. Your line “I then had to tell Steph my news as she was at work…” even your little sentences, when you reflect, are a drama on their own – wreaking havoc. So Andy, hats off to both you and Steph, you really are an inspiration and role models to all. We all read your posts and it gives hope that we too, if/when we are in that situation, can overcome it and move on and still think every day is a gift…because now we know it can be done – you set the bar high! We all know life is not easy and it is what you make of it so always pat yourselves on the back for continuously finding that inner strength to do your best…true Brit grit. Have a lovely “quiet” Xmas
Rebecca
Hi Debbie, welcome to the forum and I think you had the right approach to ignore the blood tests when MGUS but you appear to be one step further now so, again, you have the right approach to delve (at your own pace) a bit more into the world of MM. Must say didn’t know it could affect your sight so something new for me also. I was diagnosed at 50 with only 10% bone marrow but it nearly wiped my kidneys out so always bear in mind MM is unique to you and no two people are the same. My consultant on diagnosis (in a very critical way) could not get to grips with the extent of damage with only 10% but it is not unheard of so your GP is on the ball to arrange the skeletal survey. If x-ray only you have to have a fair extent of damage to show up so PET scans etc are better – if you can get one. You obviously have light chain MM, like me, and the significance of the ratio is when out of ratio it is a good indicator that the MM is active and can cause damage. The normal ratio is 0.26 – 1.65 so you are out of ratio. If you know your kappa/lambda numbers the normal range is kappa 3.3 – 19.4 and lambda 5.71 – 26.3. You will have one that is excessively over producing and affecting the ratio – that is your type of MM – I have lambda. The good thing is that you are on the radar and they will be testing regularly so you can always start treatment before significant damage occurs – just make sure you get all the tests available. There is a good info sheet on here about the free light chain testing which you will have to monitor your progress. With only 10% in my bone marrow I had a course of treatment followed by an SCT – am currently on the cusp of 3 year s remission. I would suggest you get a copy of your bloods each time and monitor your own progress but bear in mind light chains can bounce around abit so it is the trend you are looking for rather than individual results.
Best wishes, Rebecca
Hi, So great to hear from you at last …phew!… Wow 26 cycles – impressive – beating sepsis twice – wow even more impressive. Despite being dealt an unlucky hand I think lady luck is most certainly on your side and routing for you now. Glad to hear you are still enjoying travels and house moves(?). Keep carrying on carrying on!…oh, and don’t leave it so long next time to pop in!
Best wishes
Rebecca x
Thanks Dean – you’ll be enjoying xmas too also. To be honest, I think Skype, phone etc is as good as visits when you have all the family to consider. I think it will be quite a strain for your wife and it is hard to be the one with the juggling act trying to be there for everyone. I was much happier knowing my daughter was ok and in a normal routine whilst I wasn’t there and often visits are better short when you’re not feeling good. It is, however, up to your wife in the end as perhaps she may need to see you in person to help her cope. The allo is such a difficult decision (especialy when even the experts can’t agree). The biggie for me is we all know the SCT won’t cure us so it is a waiting game for it to return but I think if I could have gone down the allo route I would have convinced myself I was cured and so perhaps mentally the future is easier..but then there are potential side effects etc. oh. it is an endless game of “what ifs” – MM is so tiresome mentally – and that’s putting it mildly. Perhaps it is easier when the decision is taken out of your hands but then that’s equally unfair as it is your life and future. In the end try and put fear and, other family views, aside and go with your gut instinct I think. You are young and strong and so either way you have a good future ahead of you. Always remember that.
Best wishes
Rebecca
Thanks Stanley – will post if my crown slips.
Dean, good luck, the one piece of advice I give for those going into SCt is, and I say this with confidence due to your age, on average and with luck you’ll be out in around 16 days. I chose 16 days and did a little count down calendar. No matter how crap my day was when I crossed another day off and saw the time steadily diminishing it all seemed so doable. First few days..boredom rules…hard bit…recovering. Let’s face it is just over 2 weeks so no matter how you feel, remember, it is a short period of time. I felt like a prisoner counting the days off but it was so motivational and the real highlight of my day. Use the time to plan your recovery…always have something good to focus on in the future and to help step up your recovery regime. Glad you’re tapping into the Beacon it really is wealth of knowledge. Good luck
Rebecca
Hi – perhaps yours are just more delayed and will disappear again then? Why don’t you ask on the Beacon for others experience of it occurring much later – I am sure you will get some good feedback. I will be 3 years post SCT at Xmas and had my bloods today so will hear next Wednesday of any change – I have now moved to a 4 monthly check but think will go back to 3 monthly as I feel more comfortable with that. Feel a bit conscious of a 3 year mark and would like to think the longer it is without news the better but am now feeling “tetchy” about it all but guess that’s because I’ve just had bloods done. I am very well, thank you, probably fitter than I’ve ever been – now work 2 days and have 5 off! All good stuff and no niggles but it is difficult not to feel apprehensive of any results that will burst my bubble.
Rebecca
Hi Stanley, Am sure you have seen this on the Beacon but have copied an extract below. Am sure there have also been discussion on their threads from people with similar developments – also think they class it as MGUS status rather than relapse if all else is good. Glad everything else looks ok.
Different M-Spike After Stem Cell Transplantation Linked To Improved Survival (ASH 2012)
4 Comments By Virginia Li
Published: Jan 16, 2013 1:13 pm; Updated: Jan 16, 2013 3:35 pm
Results of a Canadian retrospective analysis indicate that multiple myeloma patients who develop one or more new monoclonal proteins (M-spikes) after stem cell transplantation may have improved progression-free and overall survival compared to those without a new M-spike.
Myeloma cells overproduce a single type of antibody, known as a monoclonal or M-protein. Different types of myeloma are classified according to the type of M-protein the patient’s myeloma cells produce.
When a patient’s original M-spike disappears and an M-spike of a different monoclonal protein appears, this is known as monoclonal banding. When the original M-spike disappears and several new M-spikes appear simultaneously, this is known as oligoclonal banding.
“Oligoclonal and monoclonal banding are associated with better overall survival and progression-free survival … and are also associated with a better quality of response, with most patients achieving VGPR [a very good partial response] after an autologous stem cell transplant,” said Dr. Victor Hugo Jimenez-Zepeda from the Princess Margaret Hospital in Toronto, Canada, who presented the findings at the American Society of Hematology (ASH) annual meeting in Atlanta last month.
Hi Dean, If available to you, I believe expert opinion would concur to do it as early as possible. I believe if you ring the helpline they can put you in touch with a “peer” who has undergone the process and you can call and talk to them and they can be used as an ear/guide throughout the process. I believe they have people trained/available for SCTs also but would certainly look into it for the allo. It sounds like a big leap but then you have the added incentive of potentially a much better outcome. Had I been fit enough (kidneys exclude me) I would have took a giant leap of faith with an allo…but then that’s easier said when I know I do not have that decision to make! Good luck with it all.
Rebecca
Yes looking at the web he appears to meet the criteria but after the velcade/dex did he have a full course of rev/dex treatment or was it just a quick top up pre Sct to lower numbers further? Otherwise can’t understand shy he is not eligible so would chase that up as perhaps that trial would be better than the pom? Either way Maureen I would seriously look to going to a top person in London for a case review/second opinion of the best way forward. When I had a second opinion it was very reassuring to speak to a leading expert. for once, and hear their suggested options based on valid expertise/insight – regardless of where you are ultimately treated. When I relapse I will always now go for second opinion – even a third when critical -(I am at a lovely hospital but it is too little). Choose well and you will be speaking to those leading the field with their knowledge. These are our most important decisions in life so let’s ensure, wherever we can, we consult the leading lights…I waited 6 weeks on the NHS – but was in no hurry – guess a private consultation would be quicker…combine it with a little break. It is very reassuring at difficult times when you feel you are taking control of your own destiny – or as much as you can – and that’s worth something in itself. It is good to hear Ian is still very well with it all which bodes well for the next treatment cycle. I do recall a Scottish lady who chose to have treatment in London once but cannot remember the detail of it all. Everything is worth considering – why not ask the helpline about it as they know all the best people and advised me who to ask. Take care.
Hi Susie..great news in the grand scheme of things and hopefully your PP will level out or continue to rise at slow snails pace only. Great to hear of no MM activity so that’s more than an early xmas present for you. Enjoy x
Hi Maureen, Good luck with the pom – this could be the one that works its magic for you so fingers crossed. I am sure Ian has not gone though the whole series of treatments/different combinations of therapy? so just for peace of mind have to hand the best experts in the country for second opinions/options.
Good luck
Mmmm… quite hedonistic 2 pints … but as daft as it sounds if belly dancing springs to mind why not give it a whirl. I actually work with someone who does it and she thinks it’s the most fantastic thing ever and makes her feel very happy/sexy/carefree….so even if you were joking why not give it a whirl…let’s face it stranger things have happened to us. I have actually looked in our area for belly dancing after talking to her but alas there is none else I’d have already given it a whirl. Glad you are feeling better. x
