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
Hi there, You sound a little battle weary today which is understandable but hey…great bowel! Next time you see your paperwork correct the spelling in red and add – cytogenics are a possible predictor only of poor prognosis due to the unique/individual nature of MM. Still breathless tho? sounds like you need a nice pint of blood to pick you up..are they withholding it? Last weekend I went to see my daughter at Uni – she had been a vegetarian from say 10yrs – 16 yrs (thank You tube and some shocking video on how chickens were treated in a well known fast food co.) As a veggie she was veerry fussy so holidays and eating out were quite stressful for us (not her). Any how she has now gone to the other extreme and steak is her fave food and she was describing how she likes it red and thought she wouldn’t like blood but she really likes the taste of it now (at this point I was reliving my pint fixes like a junkie who’d given up the good stuff and could just be tempted by a little cheeky one!). Sorry to hear things are becoming tiresome/troublesome but it’s a blip so focus on some quality treats. Since my daughter has gone to Uni and am redundant as her personal hand maiden I am becoming exceptional at this. I have lost focus on mental practises as I don’t need them now but when I look back I really enjoyed trying new things from going to Buddhist mindfulness classes to meditational and breathing exercises to tai chi (loved that), to a Reiki course I went on. What I found as interesting as the subject matter (not saying I agreed with it all but am very open to new things) was the people I met and listening to their experiences. It always perked me up mentally as you start viewing “issues” with a new perspective and it flexes your mental muscles. I guess in a sense when you feel mentally weary you need to seek something “out of the box” to re-energise you. Is there anything you’ve ever felt like having a go or exploring “sometime” in retirement that you could instigate now and give you new focus/interest? We can’t be Strong Brave women all the time – just in times of crises – other times we just need to get off the rat wheel and create stimulating diversions. Have a think..my daughter who has just gone to Uni has started up cross-stitching?… not sure why but I’m guessing some quiet contemplation time may be helping her through the first few weeks and then I think it will remain incomplete. Now.. I’m not suggesting you take up cross stitching because quiet contemplation time is NOT something we need any more of but in all of us lay the answers to our own coping strategies/mood enhancers to fit the moment. Your mission, should you choose to accept it, is to recharge your batteries in a totally new, inventive way..comfort zone – NOT allowed.
Rebecca
Hi Sue, Whilst I can’t answer your question I would just like to point out that a treatment session is about £30 and you can easily learn this skill for the cost of 4 -5 sessions and self reiki/practise. I became interested in reiki when someone at work told me about their experience and decided to have a session – but then booked myself on a days introductory course which was really interesting (cost £120) – and then you have access to reiki “shares” etc with other practitioners. Have to say I have not devoted any time to it since the workshop but was interested in it for self/family practise and do intend to get round to practising it shortly. The day was incredibly interesting and relaxing and they are held throughout the country so you would be able to find one nearby.
Rebecca
Rebecca
Oh thank you Peter – if it’s one thing I have learnt it’s that life is not to be wasted and if I go first I hope my husband seizes my departure to start afresh on new adventures – not in a better way (tho I really hope it will be for him) but just a different way…and when I say life is not to be wasted I mean ..unless you want to. Many many moons ago I used to think just staying in for the might watching soaps was a sinful waste of my shortened life and made me unhappy but now I know so long as you are enjoying it and happy then why not? As far as I’m concerned the rule books are all out of the window now.
Rebecca
