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
Hi Izzie, glad it’s all moving forward for you – this is a strange time I felt the same excitement and anticipation as tho’ I was going on holiday? (forever in denial!). At Leeds they quote 3 weeks but I think this is so you’re not disappointed or unrealistic but was told as time went that most people gp home about the 16 – 18 day mark. If I were you I’d bank on 18 and count down from this when you’re in and anything less is a welcome bonus. After the melphalan it can take about 5 days to hit rock bottom and another 10 days to go back up – until you go down it all seems abit of an anti climax – but enjoy that time. I know you haven’t felt well coming up to it so I don’t think you’ll notice a vast difference. Just keep crossing the days off your “count down” calendar as no matter haw crap you feel you feel a lot better when you can cross another day off and acknowledge it’s only a very short time period in there. Stay focussed on the bigger picture of remission. I am now 4 1/2 months post SCT and life has gone back to normal (except in the mind). Tonight I’m playing my first tennis league match of the season. At diagnosis it was intimated I would only be able to have a “knock about” due to impact, anaemia, kidneys etc. I don’t think you can fight disease biology – just take the treatment and see if it works – the real fight is to get back to the “normal” that you wish for yourself and family. This is your recovery goal.
Stay strong and stay focussed,
Rebecca
Hi Sal, wishing you both good luck – sounds like a gruelling but short treatment pre SCT and that seems better than spinning it all out with SCT always looming ahead. As Winston Churchill once said “When you’re going through hell keep going” you’ll soon be out the other side (and it really isn’t like Hell at all – all doable when you keep your eye on the goal).
Rebecca
Hi Tom – Is Dr J doing your BMB? he did mine last time and it’s the first time I felt any pain – when Helen did it I never felt anything. See there’s a new man nurse specialist – hope BMBs aren’t a steep learning curve for him/us!
Hi June – I had velcade/dex for 8 cycles and apart from the tiredness which gets worse the longer you’re on it found it any easy treatment with the plus point that you don’t lose your hair tho’ it did get very dry/dull and had to have a bit cut off it to liven it up. Are you going for a 2nd SCT as you seem to have done exceptionally well on your last one? I didn’t find the tiredness debilitating and was exercising throughout but was zonked when my head hit the pillow (considered this a major plus point). Just be careful of neuropathy, I started to feel it moreso on the last 2 cycles and took a while to go.
Good luck, Rebecca
