Hi, I’ve just been reading this thread and actually smoulderers are, I feel, just like MMers but in a longer remissive state as we are all on watch and wait but MMers have been on some treatment and I think tend to just look for “time not off treatment” period when you feel well and can enjoy life. I was diagnosed 2 yrs ago, SCt last xmas and now, just like you – but with less odds – on wait and watch. I know how difficult this is, especially with dependant children, but if there’s one thing I would like to pass on to you it’s that this is a lifetime commitment now – you’ll never reach a conclusion when you are not on “watch” and so you must train your mind to cope with the enormity of it all to lead a happy life. MM needs to be shut in a box most of the time and you can achieve this with time and practice. We all get through this in various ways I have always used exercise and to a large extent total denial of it – I have kidney issues and so when diagnosed just told everyone it was the “kidneys” and I only told my parents and sibling 1 yr later as I went for harvesting and SCt and I knew I would be away for a while and lose the hair! I only ever talk about it on here now and I like to keep abreast of news/treatments/experiences to store for future use. I went to some mindfulness lectures from a Buddhist which proved very useful and tho wasn’t earth shattering just reiterated common sense – live in the present – we all choose how we feel and react – emotions are internal to us so you can choose to be “down”/worry etc and ruin your own day or you can choose to be “happy” and change what we are in control of and accept/come to terms with what we can’t. I know this is easier said than done and I am not doing a Mindfulness course justice at all but it really did help me regain peace and train my mind much more and I believe Drs can refer you to such courses. I think, how we react to things affect the whole family and so we can create much anxiety or calm. After SCT everyone became on tenterhooks on my 2 monthly tests – I told them all was OK the first testing but slowly told them I wouldn’t be making a big deal out of it with announcements every time as it is just something that has to be done from now on and I would just get on with it – wouldn’t be secretive tho. So if I see them after an apt I may mention it casually that all was well as tho I’d been to the dentist. I also stopped telling my husband “it was time” as he gets very anxious and as I am well and act well over time it has now become an insignificant part of everyones life. Even I don’t worry now as I don’t want to waste my “well” time on negative things that I cannot alter I judge/worry based on how well I feel and that is my gauge. I do not really have any discussions about it – except on here – as I think doing so with loved ones brings them unnecessary dark thoughts. Obviously all of the above is on a watch and wait scenario where tests come back ok. I know from your posts you put on a good front for your kids and family but you can train your mind with discipline for it not be a “front” and for it to nearly always be your state of mind. Now is the time to invest in methods and techniques of the mind to stop the inevitable inner turmoil and this will put you in good stead if you need treatment when the inner turmoil steps up a few notches. There are lots of good interesting books out there relating to mindfulness, the mind influencing the body etc all good stuff. I come on the forum a lot so I do still think about it but I have lost the anxiety of it all – I used to come on the Forum anxiously looking for information/reassurance etc and now I look just “out of interest” as tho I’m keeping abreast of current affairs only and that has been a massive leap for me. You are right when you say life on the edge of a precipice but if you live on the edge constantly the fear naturally diminishes and the usual complacency of “oh well,what the hell” will eventually come also. This is the biggest mind game you will ever play so we should all be smart and invest the most resources in the mind – this will be the deal breaker. Be kind to yourself, stay out of the shadows and in the sunlight – it is said a minute of worry is a minute of lost happiness. This condition helps you focus on what’s important in life – never done so little housework and never enjoyed so much “me” time as I do now (would of course swap it back in a heart beat!). Take care,
Rebecca
Hi Julie, remember everyone is different and I seemed to have constant nausea and sickness whilst in even tho they will try a range of meds to stop it – some people just get it a bit – think I was in 16 days came out the 28th dec and remember feeling well/turning a corner on xmas day and really enjoying my dinner and was fine on discharge but once I got an infection which dragged me down I got really extreme S&D also that lasted a while but if all goes well for you you should feel fine on discharge and continue going upwards. I think I was just unlucky getting a couple of things that was a bit debilitating – without it I believe I would have been up and about and absolutely fine really early on.
Hi Julie I had my SCt at Xmas last year – had my 52nd birthday in there to boot – as always how you respond to SCt is very individual and depends on complications I got an infection as soon as discharged which caused about a 6 week delay to feeling better I would say but when you “turn the corner” you know and you can function ok – altho I had setbacks think I was making dinners etc shortly after – I suffered a number of setbacks and sickness was the main one that prevented a very early recovery. I think without the infection then onslaught of stomach bug would have been fine in a couple of weeks. At 3 months could have gone back to work but decided to stay off for 6 months for 2 reasons – winter season of germy people at work and I wanted some “me” time to get full fitness back – was playing tennis at 3 months, brisk walking etc and was at full fitness, as tho nothing had ever happened, at 6 months – doing 20 mile hill walk. I have just read your posts and note how young you are so recovery will be no problem at all – will be speedy trust me. I also note you had high level of light chains on diagnosis with little impact to your body – this is a good indication you can manage well with MM and with lots of treatment options available to you. I would add, however, after SCT and recovery my mood went considerably down for a while and I thought it was because of living with the uncertainty of it all – but it wasn’t – it was because on treatment and leading to SCT I worked on mental attitude and living in the present, not going to the dark places etc but after SCT I thought life would go back to normal, work, etc as tho it never happened but this made it worse. I now know this is a life long commitment so I went back to al the things that helped me remain positive and happy throughout treatment. So just be aware to keep doing whatever you are doing to make you feel positive now forever. You have such a lot of options going for you with youth on your side I am sure you will with the people who benefit from a long list of future discoveries/treatment. Good luck
Rebecca
Hi, sorry no-ones responded yet and not sure I’m much help on this. I had velcade n dex weekly for 8 months and other than the round face I did not put on any weight at all. The nurses expressed surprise at this as they said dex gave you the munchies and it was almost impossible to resist eating a lot more. I never did start the munchies and continued to exercise throughout but the dex does inflate you I could visibly see my face bloat on the dex days then go down a bit but in the end it inevitably stayed round throughout treatment. So as with everything MM guess everyones different but think a lot of weight gain is probably the norm for a combination of reasons.
Rebecca
Hi fozz, I am sure you have read that people can be diagnosed from recurrent infections (from compromised immune system) and you could be putting two and two together with a painful rib and coming up with MM but if it was me knowing what I know now, bearing in mind I believed a labyrinthitis diagnosis for months, I would be at the Doctors demanding tests ASAP specifically for MM. Some people do experience weight loss with MM and is often their first sign of a relapse – I have never lost weight with it – tho as you have had pneumonia and a kidney infection would you not be inclined to lose some weight due to feeling too ill to eat at times? At one time I would say at 44 MM is a real long shot but I was 50 and since then have heard of very young people being diagnosed. The raised iga would probably be expected when fighting an infection ( how much raised I do not know). I think you have sufficient concerns/symptoms to demand/request test ASAP as well as an xray initially on you rib. Hopefully, it will be a lot of coincidences but, if it isn’t, you want to be diagnosed and monitored ASAP in order that damage to the body is minimised. Don’t take no for answer, learn to be assertive now, it will put you in good stead. Have you had any night sweats? It is good that you are not burying your head in the sand and I wish you good luck and hope it is just a series of coincidences but better to check it all out ASAP.
Rebecca
Rebecca
Hi Magic, just thinking about you and thought I would just post some quotes to consider (I like motivational quotes and they inspired me a lot when in treatment)
“Life shrinks or expands in proportion to ones courage”
Winston Churchill “If you’re going through hell ..keep going”
“The moment you’re ready to quit is usually the moment right before a miracle happens. Don’t give up”. (Well I know none of us believe in miracles now but I guess there are lifelines)
and always remembering “Hope isn’t a strategy but its one hell of a motivator” and that “hope is independent of the apparatus of logic”
Good luck tomorrow I hope you get the answers you need,
Rebecca
Hi Jeffery, long may your results continue. To be honest I do not think SCT is the be all and all now – as perhaps it was a few years ago – when drug options were much more limited, and you needed to take the plunge, but nowadays you can debate either way as there are new drugs coming up which are much more kinder to the body. At 52 I felt I needed the option to span things out as much as possible and, for me, recovery to full health and fitness was good. SCt is still classed as the “gold standard” but I think many years down the line it will be considered quite crude. I was told by my Dr that years ago cancer patients were given the same high dose chemo (wiping their immune system out) but no stem cells were returned, like now, and they all tended to die of subsequent infections as they had no immune system! now that seems brutal to me and I think it was only 30 yrs ago (can’t remember for sure). I wouldn’t want my mum or dad to go through a SCT at 75+ with the new drugs on offer nowadays as I would feel their recovery time would be so much longer and that perhaps the quality of life would have irretrievable suffered in the process – but then my parents are not fit and robust to start with. Good luck with it all
Rebecca
Hi Jeff, For info dt-pace is a combination of chemo drugs typically about 5 – so you can see it is more or less throwing the kitchen sink at the M – hitting it like a sledgehammer but quite a harsh routine (understatement here) and you are hospitalised throughout the cycle I believe, for obvious reasons. Not sure, but think it’s only used on younger people who are thought to be able to take this regime – and for “aggressive” M where other treatments do not seem able to keep it at bay for any length of time. Usually used immediately before SCT perhaps 2 – 3 cycles on average. Not sure the combination of chemo but you can pretty much guess some of them by the lettering – D – dex T – thalidomide C – cyclo…I assume.
Rebecca
Hi, god what anawful decision to have to make – I think I would have asked 2 consultants for their point of view and go with their experience but then when I was wanting to go to SCT I had a hospital not wanting to risk my kidneys and one who were prepared to! and I felt grateful for that!? When I look back I was the one taking the risks but I always felt a “third” person in it all just throwing the chips on the table. Whatever you do is a gamble but which one will give you the long term odds? I totally understand how your husband feels re strength and that is a big factor to consider I think. I went into SCT very mentally strong, went thru chemo beforehand fine, but 4 weeks after SCT with constant nausea and some infection/chest set back I was mentally “broke” and my husband thought I’d “given up” n quite frankly I don’t know if I had, I was in such a state of horrible, continuous limbo of illness that it drained me of everything – and I had gone it with a hop, skip and a jump – so don’t know how it can get if you go into it already on your knees. If you mentally give in does it really impact you that much physically? can it be the actual deal breaker to life v death? I don’t know? Equally, your husband is in a pretty rough place right now so will SCT be any harder for him (tho obviously longer)? This is all so individual as to how each off us reacts to SCT – if you sail through – or if you get problem after problem. Obviously you do not sound as tho you have been given the choice to stay on lenolidimide for a while in the hope he recoups his strength sufficiently – mentally/physically to then decide on the path to take. I would have thought DT-pace could still be as effective after this treatment follows? or are they saying if it is allowed to take hold it may be too late to knock it back sufficiently for SCT? I think you have cells on ice waiting. My head would say trust your consultants and go dowm the route they believe is best but…it is our lives we risk….and now my heart says carefully consider your intuition and how you both really feel about it all – trying to take the fear out of the equation also. I recovered quickly from SCT and am back to full “life” 10 months on and I have always said I would do SCT again in heartbeat – the process was horrible but for a few weeks only – not much in the great scheme of things. I was totally 100% adamant I would rather die trying than not have an SCT- I gambled a lot on Hope – and I survived and am living life as normal. But, I am now quietly considering at the back of my mind if I would actually do it again or did I use all my luck up last time? Now I have had the time to contemplate, whilst in remission and no “rush” to survive, I hope when the time comes I listen to “me” and my gut feeling – as we are the guinea pigs in all this. My “gut” told me to go for it 100% last time, totally against my husbands wishes I might add but that was irrelevant to me as my path was set, and it was the right decision that time. I am not fearful at all of SCT but feel my instincts may have changed moreso with a second and I want to listen to my intuition next time.Sorry, I have rambled yet again as I am considering your plight but either way you both have to live with your decision so I guess I’d try and put the fear factor to one side and do a list of for/against but make sure your consultant can give you supporting evidence for the questions that need answering. Your husband will be so weak physically at this moment in time it’s a question of how much more actual risk you will be taking by doing the harder route now. I know you are all too aware of the risk/damage of infections on the body so listen carefully to your “gut” and gather some answers to the impact on an already weak body and a dented mental strength – they’ve been around it long enough to offer opinions. Good luck
Rebecca
Hi Anthony, not sure what the stats are on light chain MM v MM would expect it to be 50/50 chance? as we equally have both heavy and light parts in our system. If your consultant never mentions it then I would suppose you have normal “heavy chain” MM where measurements are gauged on the level of paraprotein in the blood. I have “light chain” MM – in that the “light” chains can break away and thus patients are more susceptible to kidney damage (due to difficulty in filtering in the light chains blocking the kidneys). I am only measured on the light chains as I do not really produce an M spike/paraprotein reading as those with standard MM do – so measuring the light chains is an accurate gauge to the extent of cancer. I did ask once which was the best type to get for survival rates and was told it makes no difference as it all depends how the MM is for you. I think you are diagnosed later with light chain and often when kidneys have been affected due to the lack of paraprotein measurement in the blood – tho I am told some with light chain M do have paraprotein readings also – as with everything in myelomaworld it’s all very contradictory and individual! Glad the V&D is working out OK for you – I had 8 cycles of it and found it ok – think the biggest drop you find is in the first cycle and then it slows down quite a bit. Met a woman once in clinic who had it and got 2 yrs remission and they were trying it again for her – just watch out and report any PN before it gets too bad.
Rebecca
H Amanda, the benefits system has been tightened up quite a bit now so think it is very hard for new claimants. We are all “terminal” as is, I guess, everyone (the cause for many tho remains unknown we’ve just got a heads up!) but terminal, thank goodness, doesn’t mean imminent – I know you are fast tracked for benefits if you have 6 months or less to go – with the consultant signing up for this. I would go to Macmillans, citizens advice and you can have someone from DWP come and see you. I know people who do not suffer from cancer but have other debilitating conditions and cannot got benefits because they can walk 100 yards ( or whatever the criteria is) and dress ok etc. I guess you need to research it all and paint the picture of the worst day – I think someone claimed carers allowance for her husband because due to PN he found opening the pill bottles too difficult and needed help dressing – buttons etc. I have heard that some (not on this site but in general) who have had their benefits stopped have retried with debilitating “depression” “anxiety” – needs someone with them when out in case of a panic attack. I guess there are more than one ways to skin a cat so to speak so, if you wish, you need to explore how others manage it. By the way, I do not claim anything and have lost a lot of money due to time off work/ reduced working hours – I guess anyone with an illness does unfortunately. I guess you need to research the exact criteria you need to meet to get benefits and figure out how to match it – but think you would need Dr support/evidence also – but not sure. Good luck
Rebecca
Hi there – I’m 52 and my daughter is 16 and as the old saying goes you “protect those you love” we don’t share any of this part of my life (actually I don’t share it with anyone) – I don’t want her worrying and I always look so well and am active so I guess/hope she thinks I’m ok as I act it. Read all you can on Mm and if you want to have that discussion then perhaps start it based on your research – if he knows “you know” he may be much more open to discuss it or upset…I never discuss my condition with anyone except on this site – I choose to lead a normal life and, as such, do not want to taint it with such discussions. I have to say I have never felt “any better” by discussing things personally but if my daughter really wanted to talk I would – but only for her benefit not mine – so you have to really think what you hope to gain from it all. Like me, I am quite sure your father accepts his condition and just wants to lead a normal life – cancer sucks so why give it air time? – I would much rather just have a lovely time with my daughter than talking about doom/gloom/death. I tend to block everything about it out of my life – it is a “compartment” that is opened when necessary. Think carefully what you hope to achieve – do you want your dad to know how much you love him? if so then tell him – have those conversations – you don’t have to link it to MM. I suspect your father, like me, doesn’t really require your extra strength and is coping Ok, in his own way – everyone has to run their own race and we all differ how we do it. Be quite clear what you hope to achieve – write a list and then analyse the ways in which you can achieve those objectives – is it all linked to talking about a chronic condition or can you get what you want by having other discussion? there’s always more than one way. Good luck
Rebecca
Hi Chris – sorry to have to say welcome but as I am sure you have gathered there is still life after MM. I didn’t have CDT but know its quite a harsh routine so SCT may not seem quite as bad for you, hopefully, and as Winston Churchill said “if you’re going through hell – keep going”. Had My SCT last Xmas (Literally – and never got any presents waiting for my return home either?! Would just like to say SCT is miserable but then so is chemo but I’ve been now 10 months without chemo and it’s great so just for that SCT was well worth it – that’s your focus a good QOL drug free. Unfortunately, you never really put it all behind you but you do learn to live with it all and appreciate things much more so I guess SCT is kind of the “end” of round 1 and you can have a much needed/fought for rest from it all. It’s all doable, just make sure you’re kind to yourself and treat yourself when you are well. Best wishes
Rebecca
Hi cupcake I had a very bad throat develop just before the harvesting process and they checked the throat the day of the cyc infusion – I was totally convinced it wouldn’t go ahead but they proceeded and it was all ok. When you complete your harvest – which is a walk in the park – it will give you a huge psychological boost in preparation for SCT. I was terrified of SCT – which is normal- the day I got my call to say a bed was available I was as excited as if I was going on holiday abroad believing it to be the end of worrying about it. Everyone is different, but regardless, SCT is horrible but doable. At your age you will recover quickly ( unless you get infections) and in 6 months I was totally back to normal fitness/life etc – but do not underestimate the recovery process. I could have gone back to work after 3 months as I was fit then but chose to have 6 months off and concentrate on my fitness levels but, more to the point, to start enjoying life. I believe had I gone back in 3 months I would have been too tired to exercise/enjoy myself and would have got dragged down by the whole process and become more depressed. Post SCT is strange as you haven’t won the race, as this race is endless, so it’s hard to put it all behind you and somehow it suddenly dawns on you that this truly is a marathon not a sprint – so you still need to discipline yourself mentally to “not to go there” and to stay in the sunlight and out of the shadows. My biggest advice would be to start planning lots of treats after SCT is over and be very kind to yourself and take time out for you/family as this can be quite a fragile time – don’t rush to get bogged down in some of lifes drudgery. I was very strong throughout chemo but SCT mentally “broke” me and it has taken many months to regain my mental strength.
Hi Mike – I find it interesting that you report a cold for action to try and avoid pneumonia – this is my first winter post SCT and, with a gfr of 25 – 27, now am very worried about the risk of pneumonia wiping out my kidneys/me. What do they give you for a cold as I thought it wasn’t treatable or do they give you antibiotics as a precaution (tho these are not kidney friendly)? Do you have a pneumonia jab? Think I need to ask some questions at my next consult (tho think he sighs and settle into his chair when I walk in asking about everything!)
Rebecca
Hi Graeme, hope your harvesting went ahead ok and you got what you needed.
Rebecca
