Hi Mike, long may your remission continue and welcome. Now you’re here can I pick your brains a bit please? I have lambda LC with kidney failure (at 51yrs)- took a year to get to SCT with kidneys at 26ish but now they’re 32. They are heavily correlated with light chains numbers – 120 LC kidneys 14% 60 LC kidneys 26ish hit the dizzy heights of 32 after SCT with LC of 7. You mention your kidneys are 30ish can I ask please have they declined over the 7yr remission or remained the same and do you follow a kidney friendly diet or do anything different to try and preserve them? I ask because I have never been seen by a renal team only my haematologist who says there is no need as it is a multi disciplinary team, he tells me I do not need to follow/do anything differently except drink my 3 ltrs (the wonder drug of this day and age!) but when I google (which is often) it seems to point to everyone with low kidney function to eat differently etc to preserve them? I exercise an awful lot also ( which I think stops me being on anti depressants) but am told by the heamatolgist this is fine. As you are an hold hand at this (and I hope I can be an old hand at this in the future!) what are your experiences please re kidney health?
Rebecca
Hi Keith – talking about getting hung up on numbers -when you posted yours the other day ( which are absolutely fabulous by the way – especially white blood count) I had my prints so went to look at mine to compare – mine were 4 months post SCT neuts -just under 2, wbc at minimum, platelets at minimum. I know my bloods are always poor, presuming due to severe kidney damage, but comparing sent me off on a downer for a while! am I very prone to infection still? etc (which I am). I had to think hard to come out of it and that is I feel really fabulous, look a picture of health, never have a hair out of place! – tho I have rubbish bloods. Last week I played 2hrs doubles tennis in the morning and then in the evening played 2 doubles matches in a league which lasted 3 1/2 hrs! felt very tired next day but so did everyone else who played. My fitness levels are really good now and that’s what I/we need to judge ourselves on more – just how well we feel and the quality of life we have – the rest is just detail. Mind games – determined to win it – Take care
Rebecca
Hi, if you ask for your blood test results they will print them off you – but it is hard to gauge how much info you should have as trust me, if you have it in hard copy, you’ll try to analyse everything. In my 1st year of treatment I only asked for 3 no.s but when I had my SCT (at xmas) I started asking for the prints and quite honestly I think just knowing the main thing – heamaglobin, neutrophils, kidneys is all you need to know. At first diagnosis I chose not to know/ask too much but slowly started looking, followed by obessively looking (a habit I am still struggling to break). I thought after my SCt it would be different but my results were mixed and am now on a 2 monthly test/consult. Myeloma is an endless mind game, if you let it be, when on treatment you are focussing on remission when told in remission you are then wondering how long – this bits new to me and I hope I can manage to put it at the back of my mind more as time goes on – guess it will depend on my next results!The main thing is to live your life as you wish to live it and to remain very positive – as it’s miserable being miserable! Act as if what you do makes a difference. It does.
Rebecca
Hi there, Have answered the “visitors” bit – I didn’t have anyone with me but others in the unit did. It is not that boring as there were others, a TV and a nurse sits with you throughout it. The bone pain is often a good sign that it’s working – too many stem cells compressed in the bone marrow. I felt the pain was like labour pains as they seem to go in waves through my body. Paracetamol generally works for them. I never had them in my chest but have heard others say if they weren’t expecting the pain they’d have thought it was a heart attack. When I went in for harvesting a nurse told me she’d heard that some people could only get relief from the back pain by going down on all fours but it was obviously too late by then to try it! I think pain generally comes from the back, chest, hip area. In the end it really was excruciating and couldn’t wait to get the little buggers out – again abit similar to labour! I don’t know about getting a lift with the transport but if you ring your nurse specialist or specialist ward I’m sure they’d be able to advise.
Best of luck, Rebecca
(think my harvest was 3 hours long)
Hi there, Sorry to hear what’s happened to you, myeloma is a tricky condition and takes quite a while to understand it (if one ever does). If you look through the Information section there is loads of easy to read literature explaining all about MM and the treatments. It sounds like you have the same type of MM as me – IGg (which is the most common) and light chains myeloma (hence the Bence Jones +ve). Treatment begins when the MM starts causing you problems eg bones, kidney, anaemia – as your light chains go up in number this means that it is becoming active and treatment starts before it can damage you. Your bloods will be their indicator along with a test to measure the levels of light chains. Unfortunately, its a watch and wait scenario but the good news is that you will definitely commence treatment before damage occurs. A lot of us are diagnosed at crisis point when damage has occurred. As you can never really get rid of MM and it is a cancer of relapse and remission I guess they don’t want to start on the treatment road until absolutely necessary. Please be reassured that there are many treatments available and many in the pipeline but we all really want to know we have as many treatment options in front of us rather than “used” and behind us. You describe exactly how everyone feels at diagnosis and the feeling like a “rabbit in headlights” takes a long time to lose – if ever. Unfortunately you are now living with “uncertainty” so learning to live in the present rather than the usual planning ahead becomes a hard lesson to learn – taking it a day at a time and slowly reading up on it and digesting it will become the norm. As you are new to this I would try and restrict trawling the internet for everything related as it can be very scary and there is much out of date statistics bandied about. This is a cancer which has in recent years rapidly advanced in treatment options so please don’t go looking at survival statistics etc as many are from when treatment options were much less and pre the new novel type drugs in use. This is a very good site and if you have any questions about anything you can guarantee someone will have “been there and done that” and can help you. I wish you all the best and hope treatment is a long way off for you. Please mnake the most of this time and travel etc after your 2 monthly monitoring and treat yourself. When treatment starts it can be for up to 6 months – but I went abroad whilst on treatment as the treatment was not really affecting me, as have others. Best wishes,
Rebecca
Hi there, no isolation involved in this process at all. I was in a unit with 4 others – some had a visitor stay with them (presumably their “ride”. You just hook up and sit there for a couple of hours, pain free and one of the simpler processes to go through I think. Fingers crossed for a good harvest.
My goodness Helen, don’t know what to say. Except you sound as tho you have a great consultant and are not restricted by the path I always get quoted thalidomide then revlimid. Is pomalidomide a trial at your hospital? Allo – aargh – but if the future looked bleak I’d do anything to prolong it and while we may consider this absolutely huge, as it is, in the US it is done frequently, if not routinely, for high risk patients and on the myeloma beacon there are many who have fared incredibly well after it. I was 50 when diagnosed and wondered if I could have had an allo, my kidneys rule me out now, for a while I used to think I was glad I couldn’t do the allo route as I know I would have taken it, regardless of risks, if offered. Now I really wish I had it as a back up plan for an early relapse. People always say “quality of life” etc but to be honest, with a family, I’d take much less QOL to stay part of it. You have a lot to think about but not really much choice if you choose “life”. You’re in a really scary place but they have thrown you lifelines – I hope you grab them and hold on tight. It is so true now that life shrinks or expands in proportion to ones courage. I have read Jet Blacks blog who has had an allo and, its fair to say, has suffered some GVHD but I do remember her saying the allo wasn’t as bad as the SCT – and she is still here and enjoying life despite some of the setbacks. You must be back to being totally consumed by this “thing”, how did we fill our brains before? I am now trying to set aside a small time each day to think about MM/trawl literature etc then close it off as tho my job is done for the day! It’s hard to do/stay disciplined but am going to stick with it as altho it doesn’t “consume” me anymore it still permeates many thoughts. Best of luck Helen
Rebecca
OOPS – meant to say enjoy your last night at home for a while.
Hi Izzie, that’s great news – you are going into SCt with the best possible chance of a long remission as many, including myself, go into it without having been able to get to your stage. Research shows that the greater you get to 0 paraproteins the better it is for SCT. I know how positive you’ll be feeling now as even the slightest bit of good news/improvement in things sends me ecstatic and “lifts” me up for a such a long time as well – guess in myelomaland we quickly learn to value/enjoy anything positive and celebrate accordingly (now wish I’d done that more pre MM – never wanted to celebrate getting older/birthdays now I can’t wait for my birthday!). Enjoy your last night – hope you have as much wine as chox as you can…or whatever floats your boat.
Good luck, Rebecca
Hi, I haven’t had bone damage/aches and pains previously but post SCt my whole body felt very stiff and achey when I eventually started moving round ( due to illness I was more or less flat on my back for about 6 weeks – including the hospital bit). I think much of it was being so bed bound that the body had seized up but also, when I started trying to walk etc it felt like I’d walked 10 miles with very tight calf muscles as tho’ I’d pulled every muscle in my lower legs and this continued for quite some time along with new neuropathy in toes. I’m told the aching/painful calves is nerve damage and this has now almost gone but I still have the toes which don’t seem to have subsided at all (4months +). It is along time to be inactive/pumped full of poison – melphalan is a derivative of the old nerve gas – and I feel I lost a lot of my normal flexibity eg from more or less being able to nearly putting all the hand on the floor I could not get anywhere near to touching my toes after SCT and now can just manage to touch toes and I have been working on my flexibility quite a lot recently – back aches now qll gone. I think the whole body takes a massive battering including all muscle groups etc. The good thing is your wife is on an upward trend now so hopefully will improve the more she does – after being laid down for so long my Dr said just walking upstairs and moving around the house was “exercise” enough and not to push it as there is inevitably some muscle wastage and weakness to overcome.
Best wishes Rebecca
Hi Rosie, my understanding of myelomatous deposits are the MM plasma cells. I guess these deposits are not unusual Unless your husband is in stringent complete remission i.e. absolutely no trace of the plasma cells in the bone marrow. As the majority of us do not achieve this status and carry some “minimal residual disease” then it would not be unusual to identify deposits of it – as David says its if they are sufficient to cause problems that would instigate treatment.
Regards, Rebecca
They didn’t/don’t give me anything – they just knocked it off. I’m at a small hospital and sometimes think things are done differently at the larger ones. When I have treatment again I will ask about dapsone now. thanks
Hi Helen, sorry to hear of your relapse so soon. I have never got “angry” about getting this disease, guess I was more shell shocked and didn’t have the energy to get angry but now when I hear of relapses like this it makes me so angry. The cancer ward is always full of really nice people and families and it’s hard now not to wonder why. Guess all cancer’s a bit of a mind **** but MM certainly seems to take the biscuit. At least there are still options for you out there and they are growing in number. Do you have stem cells on ice? Perhaps SCT’s are like everything else in myelomaland and no two are the same. They say you get half again on your second SCT and then you always hear of some who got twice as much on the 2nd
Rebecca
Hi Stanley, I was allergic to alluprenol (apparently the only drug I should always be on for my kidneys!) Quite frightening with the rash everywhere – we thought it was meningitis! took weeks to go but only had “symptoms” for a couple of days. Apparently its a well known side effect but wish we’d have been given the nod beforehand as it was really scary. No red wine for you then!
Rebecca
Hi Sal – wow 6 chemo drugs – that’s quite a cocktail and I hope it hits it hard, and sounds like you’re at a good hospital and in safe hands. I’m all for throwing the kitchen sink at it.Enjoy the bank holiday sunshine and the takeway n don’t forget some booze – pack in all the things you won’t be able to have/do for a while.
Rebecca
