I think they only tell you to lay off the booze in case it makes you extra dizzy with low BP side effects etc – I drank – very moderately throughout – only 1 glass of red per session – and now feel positively drunk on a 2nd glass of wine! used to guzzle it like a fish but now I enjoy just a bit and savour it – even new habits are hard to break!
Wow that’s great news – didn’t know CDT worked that quickly – you must be well chuffed with those results. Hope you plan a celebration this weekend.
Hi Keith – great to hear you’re doing OK so soon after SCT and getting out for walks – you are certainly an inspiration for those who will being SCTing shortly. Are you trying those calorie/protein drinks they give you in hospital and you can get on prescription? must admit they tasted terrible in hospital so I only had one.
Hi Stanley – I think your appetite might be dex induced as most seem to blame dex on an increased appetite and inability to stop munching around those days I was told I would put on weight due to dex and wouldn’t be able to stop myself eating, but I was careful to not start unnecessarily munching on dex days and did not gain/lose weight throughout. I only lost 8lbs from the SCt process and was very nauseous for a long time but always seemed able to be sick and then eat straight after. A lot of people tho’ seemed to say they lost 1 stone plus.
Hi Stanley, I believe it is essential to understand results/mm etc as we are mnoreoften than not in positions of little control. In the US – I use the myeloma beacon site a lot for info – patients seem so clued up about everything which I believe is because they choose their centre of treatment, consultant, their approach to treatment and treatment itself via their insurance package. In the Uk we don’t really have this luxury and unless on trials our route is pretty much standardised and laid down. When I was first diagnosed it took me a long time to gain answers as I only asked questions when I felt prepared mentally/strong enough to deal with the answers. In particular, I now have mixed views on knowing an individuals cytogenics – unless its bog standard MM – I say this because MM is very much a mind game and its crushing to know poor cytogenics with no way of influencing it or being treated differently for it. As I was an extremely fit and healthy 50 yr old pre diagnosis (them were the days!) I was convinced I had the most aggressive form etc it took me about 4 months to ask about my cytogenics (they are usually done on your 1st BMB) and I was told no, I was standard. The relief, joy, positivity I got from this lifted me throughout my treatment – a big Hope. I was already battling just above dialysis kidneys and had I been told otherwise I’m not sure how my outlook may have changed but I know it would have been a huge negative. Anyway, kidneys got enough for 2 transplant centres to debate SCT and Leeds took me. At one of my consults the Dr was away so the nurse decided to read the Leeds acceptance letter out to me and the reasoning to SCT me was poor cytogenics! Obviously the nurse could no elaborate further etc so I went home with all the old demons creeping back but then I decided it didn’t matter what my cytogenics were as I couldn’t do anything about it them but worry and that was pointless so I decided to remember we are all individuals and there have been cases of people with aggressive MM that have bucked the trend etc. I had other opportunities to ask my Dr after this but chose not to as the specifics didn’t matter to me. My consultant is a lovely, gentle, compassionate man and I figured he’s been around cancer long enough to know what is helpful or not. When I went to Leeds they went through it all with me and I am not all “high risk” as the jury is out on my translocation tho’ it is one that is associated with kidney damage which ultimately affects prognosis. Anyway, sorry to rattle on about this but sometimes I think you have to think carefully how the results will affect you. I believe the longer you are down this road the less you will get hung up on numbers but go by how well you feel and your quality of life as a marker of the disease. MM can so easily mess unnecessarily with the head sometimes its often better not to give it further ammunition. Obviously I wouldn’t think this if I felt how the MM was approached was influenced by individual factors. Guess all I’m saying is be careful what you ask for and know what you are going to do with the info you want/ how it may impact on you.
It is worth looking at The myeloma beacon site (as always) – there is a press release out – under the Forum (MM category) detailing the exciting work Prof Morgan will be involved in which is looking at high risk MM/genetics and has already stated the Uk will be involved in the trials. I can only think this is good for the UK – one of our top guys with a massive budget/research centre with more than an interest in the UK benefitting from it.
Hi Helen, I have read how if you respond quickly it comes back quickly – in the 1st month of velcade I came down from 1120 to 140 but then it took 7 mpnths to get it to around 60ish – would this be classed as responding v quickly? And on the subject of hair again….I have heard how the kinks and curl go in time (mine still too short to know if it will do this) but does it ever revert to its normal colour in time? – finding going from blonde to black a tad too much of a change.
Hi dick, I’m IGG Lambda but have never had much of a M-spike (diagnosed at 1120 light chains) think it was .6 at diagnosis but not sure as they don’t really look at that. My consultant is lovely but likes to just generalise but will give specifics when asked eg at 100 day BMB result he just said he was happy with my bone marrow – when pushed he looked and SCt had made no change to 0.3% but I’m sure he knew that all along. Early on I asked him my cytogenics/risk – specifically asked if I had translocations or deletions and he said no I was just standard. When I went to the other hospital they went through them with me! I did feel then, tho that my consultant had been sort of right to withhold this info as at the time had very little kidney function and had enough to worry about adding something else that I can’t influence I guess is a bit unhelpful mentally and may have pushed me over the edge. Anyway, now I know how our consult works I ask for specific no.s and get them – obviously I’ve never asked for the IGG so don’t get it! but I presume it pretty much follows light chains? if my light chains at 7 then presume the IGG will be in range? Not really sure I care at the moment feel I’ve done my bit with SCT and don’t want to dwell on anything too much until I have to – I am very lucky not to have bone damage as that is my worse fear (apart from the obvious) as my interests etc are exercise related. Have you had the BMB result yet – did it reduce it any? I am glad that I did the SCT as if I hadn’t (and my husband didn’t want me to do it cos of kidney risk) I would have always wondered “what if” and that would be mental torture for me.
Hi Dick, sorry it’s not been as successful as it could have been but has got you to “stable” – we tend to pin in all our hopes on SCt and yet I think it’s only about 20% who achieve CR from it. I spent literally a year trying to get to SCT without actually thinking beyond it – SCT was my goal. I went into SCt with IGG lambda light chains at about 60 and there was no change after SCT until the 100 day test and then it had dropped to 7 with kappa at .4 so very low but ratio still out of kilter – consultant says he doesn’t know if its active at such a low level (tho’ he hates to tell you anything that isn’t positive). I am being tested every 2 months now so we will see if it goes down more or remains stable tho’ consultant is calling it remission – guess maintenance when it rises. I think you are right not to do a tandem I have done a lot of reading whilst off and in the US they like you to be in CR before SCt and some say anything above 50 light chains make the procedure “iffy”. A Uk guy I was speaking to did not achieve 2 yrs from his SCt and was told he had to be in CR to have a second one – so there must be some truth in it – altho’ we seem to just have enough treatment to get to an acceptable level to SCT. I have never been given my IGG figures only light chains so I will ask at my next consult. I guess if you have no symptoms you can remain drug free and stable for a long time. Watch and wait is something I’ve never thought about before but I guess it’s only when its blood test/results that it makes you think more. If my levels remain the same in June I am going to ask the consultant if I can just have the tests but not go in for the results and wait for them to get in touch when they need to. I feel great now so don’t want to keep analysing numbers – I have already done that and predicted my relapse – mimnimal residual disease at .3% (no change after SCT), poor cytogenics, no maintenance… but somehow it doesn’t bother me so much now and I just think “who knows” I feel great so what more do I need to think of. What we cannot alter let’s ignore and enjoy the time until we’re not allowed to ignore it anymore I say. Hope is independent of the apparatus of logic and I have a lot of hope – misplaced? who knows? who cares? it works for me.
Best wishes,
Rebecca
Hi Keith, You have done fantastically well throughout – even my neutrophils were still just below 2 and that’s after 4 months! Congratulations, you just have to take care of yourself now and be mindful of germs.
Best wishes, Rebecca
Hi Stanley, I agree with dick if you phone the helpline you can discuss/get advice/have it all explained with an expert – you can never fully quiz consultants until you have straight in your mind and I have often gone over my results with the helpline to get my head round it all. My understanding of staging is that it is now based on beta-2-microglobulin and levels of albumin. Stage 2 is beta 2 >3.5<5.5 – in the old staging more factors were looked at including bone damage but to be stage 3 you had to have 3 or more areas of bone destroyed. Stage 2 was more or less classed as between stage ! and 3 rather than specifics. Staging can help determine prognosis but my consultant doesn’t seem to find this helpful as there are lots of new drugs that are game changers re prognosis. I have light chain – the ratio is very important as it determines the level of activity and basically your aim will be get it back in normal range and normal ratio this is kappa – between 3-19 and lambda between 5 – 26. Thumbnail is I kappa to 1.5 lambda. The normal ratio is between 0.26 – 1.65 (dividing K by L) Outside the ratio and it is active. After each cycle you will know how much your light chains have decreased – this was always my main focus. It is very good that your kidneys have not been effected and I believe when you start zometa your bones will strengthen etc. Sorry you got the CDT in the trial but altho its the old standard it is well proven – people have got as much remission from just CDT as others have got from SCT – I believe it’s quite a harsh regime (I had velcade/dex cos of kidney damage) but its not forever and this time next year you will have CDT and SCT under your belt, be in remission and everything in life will seem that much better and you will be looking forward to the best summer ever – grass greener- flowers brighter – wife even more beautiful – low stress levels – knowing what’s important in life. It is a roller coaster ride make no mistake but when you’re going up it’s great.
Stay strong,
Rebecca
Hi Izzie,
Glad you have decide to SCT in the end and sorry to hear you’re still having a rough ride – it won’t be like that forever. Had my SCt at Xmas and totally back to normal now it’s as though I’ve never had it as I now have no after effects anymore from it like tiredness so keep looking at the bigger picture. Regarding peripheral neuropathy/pain threshold – I had velcade for 8 cycles reknown for the dreaded PN but I only got it a bit near the end and I thought it was because I was still exercising but I read an interesting article that they have now found something in our genetic make up – a particular marker – that more or less determines whether you’ll get it or not when taking velcade and they are now looking at how to stop this particular marker with a view to making velcade more accessible for people (very long term project). So I guess why we all react differently is basically down to genetic make up rather than outside influences. If you ever want to meet up before your SCt I have sent you a private message with my mobile no. – just open “your Account”. Best of luck Izzie.
Rebecca
Thanks Stanley – there is one saying that I used as my mantra during the whole process and even now – I got it from Eve “Worrying does not empty tomorrow of its troubles it empties today of its strength. It is so true and such a negative waste of energy. I reminded myself of this everytime I worried about my family etc and generally all the time if I had black thoughts. It takes a long time but with perseverance you can block a lot of unnecessary things out, lock it in a cupboard as Eve says, and just focus on the day. I also like Caroles saying “you never know how strong you are until the only choice you have is to be strong. Having come through it, for now, I feel like a warrior! I know I have the strength for whatever the future brings and you will also.
Rebecca
Hi Stanley, when you read your experience it sounds like you have had many years to get your head round it but I know it doesn’t work that way and when they tell you it’s an indescribable blow and the start of something all consuming until you get your head straight (if, in fact, you ever do). Good luck with your treatment you will no doubt be going down the SCT route. I wasn’t eligible for your trial but had chemo then SCt at Xmas and am now totally back to normal/fitness and drug free and just starting being monitored by 2 monthly blood test. Lifes good – feels better than ever now I appreciate everything so much more – and I feel MM is no longer dominating it in a negative way. You will get to this stage also, you are young and strong, so focus on the end goal and stay positive. There are lots of people on here who have done your trial/treatment who I am sure will help you on the way.
Best wishes, Rebecca
Hi, I have always assumed, talking with the consultant, the VGPR (90% reduction or greater in blood and urine paraprotein) to be taken from measuring the figure at diagnosis with the end figure from treatment i.e. the SCT – and that the frontline treatment and SCT sort of counted as “one” treatment – if you see what I mean. Because some people SCT when they have achieved a complete response anyway from frontline treatment – to strengthen its depth. Must admit you’re making me question it now but I do think this right.
Rebecca
It’s early days for your kidneys so try and stay positive – it took mine a while to get to 16 gfr and after 4 months (from starting) I was told to expect no further improvement but todays reading was gfr 32 – my highest! I have found, tho’ I may be an exception, that kidney function improves with any improvement in light chain reduction – I SCTd with a kidney function of 26-27 and it looks like the SCt has helped also. I never had dialysis – tho was so close – the reason I was given later was because I could pee large quantities (so kidneys not shut down) as well as drink large quantities – and the treatment reduced the bulk of my MM in the 1st month. It’s hard to say which is the scariest MM or kidney failure but when I was at 16 gfr I was essentially leading a normal life and going to the gym and playing tennis which is really weird as you read they start talking dialysis at say below 18? Can only think MM is a bit different to other kidney disease. I also got in touch with another MM person who encouraged me not to give up and he sent me his renal charts showing that over a 3 year period they had improved – he was very well read on food influences for kidneys, exercise etc. which he shared. So exceptions can happen. He also had a MM friend who was on dialysis (pre and post SCT) and his kidneys improved and he came off dialysis – but it took 3 years. I SCT’d at Leeds and they had SCT’d people on dialysis who came off dialysis after the SCT – so I do think there’s a strong correlation with your nos. Do you have light chain (Bence Jones)MM?
Stay positive and focussed (its the only way to get through this in one piece) and always remember we are all individuals and all individuals react differently so they cannot know for sure if its as “good as it gets” re kidneys because that’s what they told me (and I’m now double that number) -and I’m sure countless others. You can do this.
Good luck
Rebecca
