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
Hi Michelle, your story sounds like mine diagnosed at 50 in nov 2012 following months of being unwell and told by Dr it was a non specific virus and labyrinthitis when the symptoms were actually kidney failure but no blood test done. Eventually when I had a blood test was told to go straight to hospital as my kidneys were at 5%. I was on velcade/dex ands I do think this is one of the easier treatments as apart from the dexy days it just made me tired – moreso as time goes on – but mine was not enough to stop me doing anything but was totally zonked out as soon as I went to bed – but I found this to be a big plus point as the sleepless nights worrying/wondering in the early days were truly awful. Velcade became a frontline treatment only in March this year but you would have got it anyway, like me, as it is very kind to kidneys. Have you kidneys recovered yet? mine only partially recovered but I had my SCT at Xmas and can honestly say I am 100% totally back to normal now – so don’t despair it’s a slog but there will be light at the end of the tunnel and you have youth on your side.
Stay strong, Rebecca
Hello Sindy, sorry you have found us but you will find this site very comforting and informative along the way. MM does have the ability to make you feel like you’re alone in a room full of people but alone – different – set apart. MM to me is much more of a mental challenge than a physical challenge – I don’t fight the cancer I am resigned to whatever my fate is regards this, I believe all treatment is manageable, but I fight 24/7 for it not to define me and to lead a normal life – for me and my family and on the outside I am there – but inside my (private) head it is a different story – but getting easier. You will get lots of support from this site when you need it – please tell us your story so far – it’s always nice to know and others will have similar journeys who can maybe help with queries etc. It’s strange as we are all essentially strangers and yet it has the feel/support of an intimate little club.
Stay strong,
Rebecca
Hi David, I think if you look at the statistics of SCt very few reach stringent complete response or even a complete response – altho’ we all pin our hopes on it. Also some who have achieved SCR have found it back within the year. As I have never been on a trial – where the opportunity for maintenance is there – I won’t get it. I saw Prof Roger Cook at Leeds (a leading guy I am lead to believe) and when I asked about maintenance he didn’t seem too pro maintenance because he said it was using up an option sooner rather than later and you would get it when you need it anyway (it might, however, have seemed that way because he knew I wouldn’t get it tho’!). Research from US does give longer survival stats (but not that much more) with maintenance but do you have balance that with quality of life/side effects and the fact that MM is so individual who really knows how it will pan out for any individual? I hate taking drugs and felt so much better mentally/physically when I came off them pre SCT it was like being normal again – no dexy days, no tiredness etc. it was like a veil had been lifted and I dread going back on treatment – specially dex as I’m vain enough to hate the fat face syndrome! Maintenance now or at first relapse? those who are randomised and get no drugs seem to be very relieved as they have what they want (to be drug free) but the decision has been taken from them – unfortunately not for you. I would trawl through the Myeloma Beacon site as there is a lot of info on this subject in the News and the bloggers who seem to have taken various maintenance for years.
Good luck with whatever you choose.
Rebecca
Hi David, I actually get my results on Wednesday so will let you know but, like you, there have been indications that is has not fully worked but consultant would not discuss until after 100 days test etc. I was not on trial pre SCT so don’t think maintenance is an option until relapse – did ask SCT consultant about maintenance after but he said no – obviously may change dependant on results – not bothering to second guess at this stage. If I hadn’t SCTd I would have gone on to thalidomide so guess this will be my route at my hospital – just the usual choise thalidomide then revlimid when its stopped ets. I have never had bone damage (yet) my problem is kidneys gfr around 27, I have however suffered with nerve damage after the SCT – for weeks felt like I had walked 10 miles and pulled all my calf muscles and toes are uncomfortable but as time goes on that is getting easier. For say 1st 9 weeks could do very little then just threw myself into exercise and have regained fitness quite quickly – I do an hours paper round (for my daughter) each morning and this routine really helped me get better as I could tell each week how much easier it was to do, I walk probably another 2 hrs + a day and play tennis as much as I can – 2hrs double slots. I was struggling to stay awake past 8 when I first started getting fit but that just seems to have disappeared now. For me exercise helps me so much mentally but I really do think since I threw myself into it my recovery has gone from strength to strength. I am a bit of an “all or nothing” person and do think I’ve overdone the exercise but am staggered by how it’s helped my recovery. When I first started walking I had aches and a stiff back but I think it was because I was on my back for 1st 7 weeks and the more exercise I have done they have all gone.
Rebecca
Hi – Have you had your stem cell collection yet? I found that once I’d seen the SCT consultant I was more or less booked in for stem cell collection – the hospital gives you a slot for harvesting and then your hospital works back from this date to get you ready for the harvest collection (sounds like a body snatchers movie here!)- can’t remember now how may days that was – about a week I think for the primer chemo and growth jabs. This process took 3 weeks or so from consult. Only once successfully harvested will you get a either a time slot – actual date to go in – or be put on a waiting list. At Leeds I went on a waiting list – harvestd October, hickman line in 1 November (couldn’t go on waiting list until all prepared) then got a call 10pm 12th December to go in so was in over Xmas) – my consultant had also been badgering the hospital to get me up the list as I had stopped treatment in the July. Others I believe have been given an actual date – dependant on bed availability. Leeds are very busy with transplants.Anyway came out after Xmas and can say I am totally back to normal/fitness levels now (played 12hours tennis last week!). I have had to push through the tiredness to get to this stage but feel as tho’ I’ve never had it done now – very strange. I think all unpleasant things are forgotten quickly when you start to recover – its your family who keeps the memories more readily, unfortunately. I had the option to delay until after xmas but chose not to – cancelled my 52nd birthday as I was in hospital and having it exactly 6 months later with my husbands! SCt/recovery is a slog for all the family, it will basically wipe out the summer for you, so if you want a break etc beforehand I’d just run it by the consultant as it could take some time to get harvested anyway. I think others have delayed for weddings/events. Remember it’s your decision – your levels must be stable at this stage if you going down this route anyway.
Best of luck, Rebecca
Hi, Sorry you Have joined us and no-one has responded to you yet – I think you may be better posting your queries in either Newcomers or Treatment – to be fair I think few people look/post under this category much – particularly if treatment related as age tends to be irrelevant. Would be helpful to say what treatment plan you are on etc as you’ll find lots of people who will share their experiences on specific treatments and give you the heads up on what to expect in further cycles. I was only on dex once a week 40mg and did find that the body adjusted better to it after time (or I had?) but I only had the ususual insomnia/hyperness and quite weepy after it. If you search for steroids under treatment you should get some idea on how it affected others and perhaps it affects people differently also dependant on what other drugs they are on? I was diagnosed at 51yrs in 11m2012 and still struggle to come to terms with it and how it turns your life upside down even tho’ to the “outside” world I have managed to live my life as near as (before) normal as possible. I have just had my SCT at Xmas and feel I am totally back to normal now (played 12 hours tennis last week!) look so well and no-one would suspect what I’ve been through but still mentally it dominates my life even tho’ I am living my life “as normal” now. Good luck and please try reposting as people on the same treatment plan as you will generously share their experiences and this knowledge will help.
Stay strong, Rebecca
Just remember John there’s a big plus point when you do hit rock bottom – the only way is up, up and home!
Thanks Carol and Finn – feel a bit better now finn – Carol think you’re getting star treatment! Carol – getting my results next week only had 0.03% in bone marrow pre transplant but lambda wouldn’t move below around 60 I think – Doc won’t discuss results until next week but know light chains haven’t moved. I’m rather strange had only 1120 lambda at diagnosis (late diagnosis) but kidneys at 5% and I’ve only recovered about 26 -28 gfr now (about half a kidney). The transplant hasn’t altered my kidneys so believe light chains are unmoved – I only have to have a slight drop in chains to see an increase in kidney function. At SCT at another hospital I discovered I had a 14:16 translocation which on the myeloma beacon site is normally associated with kidney damage not bone damage. My consultant – who is the most lovely man – had told me previously I didn’t have any translocations or deletions! I think he was right to withhold this as I was struggling for months to get beyond 16% gfr and obviously worried about MM/kidneys – which would get me first! to have told me would have caused further anxiety and may have pushed me over the edge – I can’t influence my genetics so it was best I didn’t know I think. Anyway, I know he doesn’t like to be the bearer of bad news but will go out of his way to share any good news so I believe the SCT has not altered anything and that I will still have minimal residual disease and a ratio out of kilter- I’m considering myself to be a work in progress. C’est la vie.
Hi carol, 3 months after transplant all my drugs stopped – tho it was only acyclovir and co-triximole (feel like a poor relation now!). Although I have not yet spoken to my consultant about flying – waiting for final results next week I was planning to fly in June (6 months post) pre-school hols price hike and just after GCSEs. I always thought the guidance was don’t fly for 6 months? how long does your consultant say? – they’re obviously more enlightened/cutting edge if you get “just in case” drugs for a year. At my last consult my Doc said I would have to take antibiotics if I got a temperature for 6 – 8 months only after transplant. Now cpnfused.
PS Not particularly relishing going abroad so soon but I think life goes on – take a (scary)leap back into it – don’t want to deprive others of “normality”. Would love to compare your understanding of post transplant care as I don’t feel very informed at all.
Rebecca
Hi Izzie, when you want to hook up just private message me – I met another lady recently who had gone thru SCt etc recently like me and it was really therapeutic because we talked non stop about things you can’t share with people who haven’t been through it – I don’t think anyone can even imagine it so I don’t bother talking about it to anyone – I also got lots of tips etc as she was a bit further on than me. Hair loss is massive to me – I lead my life trying not to acknowledge my condition – very much in denial – but every time I look in the mirror (without my wig) it acts as a horrible reminder – I too wasn’t bothered at first – bigger fish to fry – but now I’m over the SCT and feeling better I really want that bit over as well! Fat chance.
People, like me, who talk about light chains it’s because we have light chain myeloma – often there is very little paraprotein to measure with this type of myeloma and so the common measure tends to be the level of light chains. It sounds like you don’t have light chain – or Bence Jones myeloma- and so you can track your progress on the decreasing (hopefully) of paraproteins with a view to getting to zero or as near as damn it. People also generally want to know their haemoglobin level – obviously if it is low this can explain some fatigue etc as you may be slightly anaemic.
Trust me you will get over this blip and start to feel better
Rebecca
Hi Mandy, when you think the nightmare can’t get worse it goes to a whole a new level, so absolutely gutted and sorry to hear your news and predicament. I think if you ring the helpline you may be able to get in touch with someone who has gone through a double transplant – its the peer support group/sponsor I believe. The myeloma beacon site also has many allo transplant patients/survivors stories. I know you had a very rough ride with your first SCT and there is a very long recovery period after an allo – can the hospital put you in touch with someone locally who has gone through it?. Presumably you have time to decide so I would use this time to slowly gather and digest information and perhaps have some counselling also – think this is the time to use this option. I am always taken aback when consultants put a time frame on things as it seems so definite – but it is only an opinion – my consultant refuses to talk personal prognosis as he says you never know what’s round the corner (he is a very kind man and I know now I don’t want to know as it diminishes hope – something we all need).
How the hell do you tell family this? no idea. Personally I would keep this to myself until I’d had time to get my head round it, digested it, and made my decision- this is your decision alone. I would never pass on the suggested “timeframe” to my nearest and dearest I think it’s too hard to live with and it’s one persons opinion – obviously your family are aware of the severity of the situation anyway.
Stay strong – don’t let it rob you of making the most of your time – this is at least one thing that you know is in your control.
Take care,
Rebecca
Hi John. just keeping crossing the days off your calendar and every day will not only seem like one day less to go but also a big achievement just to get through it – be proud how strong you are and that you are a fighter. Have read on the US web sites about the mix with velcade and that it is a very effective combination but not heard of hospitals using it over here yet – yet another plus point in your favour.
Stay strong
RebeccA
