Hi Sandra, this cancer is a huge shock to everyone and it is a natural reaction for your husband to not want to know everything initially – I left hospital with no literature and said I would ask when I was ready. I made a pact with my husband not to look at the internet (he did, however, but never told me of his research and when I was ready I took a deep breath and looked and grieved all over again. I am sure your husband is just concentrating on the now and copng with the daily hurdles and that is fine. Be careful not to push/offer information in him and let him come round to it all in his own time but have the knowledge there when he voices his questions/concerns with you. I think this is very important when you have a consult – you should make a list, with him, of what questions you want answering and stick to that- go at his pace. I secretly recorded my consults as I forgot a lot of things in the panic of the moment and it was good to play back and digest later. Read up on it so you can understand some of the fundamentals they are telling you and I would ask for a print of the results – this is your entitlement so don’t be fobbed off – this will give you all your bloods and light chain readings etc and it is useful for you to track at each blood taking session how your light chains are reducing etc – it’s a great boost when you see a downward trend. Note also that the best results from velcade are generally in the first few sessions and then the trend slows down until it plateaus – this is normal so don’t expect huge jumps for ever. This is a marathon. not a sprint, so there is no need to overload yourself all at once. I have found over time I like to research and keep abreast of developments etc for when I relapse but I find it much easier to do now as I am not in a blind panic. Take time to grieve because if this diagnosis and then collect yourself up and move forward with hope and optimism – you will find lots of stories that are not all doom and gloom and realise lots of people live essentially a “normal” life. this is a cancer of relapse and remission and advancement of drugs for it are increasing at a much faster rate than a lot of cancers. My advice to you is to take time to have “your” time throughout this, take the time to treat yourself – even if its that’s just a catch up coffee with old friends – you need to be strong and energised so taking care of yourself and mental health is equally important if not moreso. Your husband needs to see your reassurance that everything will come good and you are both strong enough to take whatever is thrown at you. Optimism is infectious and he will be feeling very fragile – as you are no doubt – but nows the time to take the lead for him – for a while anyway. I am sure you have been told also that velcade makes you increasingly tired and the steroids send you buzzing/agitated/ metally all over the place for a few days and then on a downer – I always felt very wheepy after it. It may help if you write in a diary a pattern of his moods/sleep etc over the cycle and then you can forecast the effects and have your strategies to cope with them. For example, on my down day I planned a treat to uplift me, at certain times I avoided social situations as I used to have 3 conversations at once and listened to none as tho I was on speed. it was funny at first but then on that particular day I had a quiet one at home! It is all manageable and doable the best thing is to recognise the patterns and work with them to minimise any effects.
Rebecca
Hi Sandra, Sorry you are here, MM is very difficult to understand and the important thing to remember is that it is a very individual cancer so when you read through literature etc always bear that in mind. If you go to the information section on this site there are lots of guides to help you understand this complicated disease. I was admitted with kidney failure (had been in failure for several months – diagnosed as labyrinthitis and a non-specific virus by my Dr!) An indication of its individuality is my light chains were 1120 and I went in with 5% kidney function and severely anaemic. I have read that “typically” when light chains get above 10,000 it is likely they will damage kidneys but for each person it is different. Your husbands light chains are high – the normal level of light chains you should have in your body is: Kappa light chain between 3.3 – 19.4 mg/l and Lambda between 5.71 – 26.3 mg/l. There are always kappa and lambda and your husband will be overproducing one of these – your Dr will know which type he has. These are the levels you are aiming for in your treatment. I was on velcade/dex for 8 months pre SCT – velcade is a good drug and known to be kidney friendly – which is why he is on it. I suspect he will get some increase in kidney function when the burden of the light chains have been removed but to what extent is an unknown at present. I was at 16% for several months and thought they wouldn’t improve – I SCT’s at 28 (18 months ago) and currently at 32 – 33% now. Never give up hope of improvement. I had my SCT in Leeds and was told someone SCt’d on dialysis and later came off dialysis. Generally, when you have light chain MM you tend to track the light chain levels as a measure to the extent of disease rather than paraproteins. With regards to staging (from your other posting) you can look it up and calculate from your husbands results but I believe your Dr is right that it is unimportant because with new drugs (of which velcade is one) being at stage 4 instead of stage 1 just means that you have more MM to get rid of with more body or organ damage but if you respond well to treatment then you have the same chance as a stage 1 person who does not respond so well to treatment – remember it is very individual. Kidney damage is always an added factor of risk – many chemo drugs can impact further on kidneys or you may have to have a lower dose which may not work as well and the risk of infection is ever present and can do more damage to the kidneys so yes it is less favourable but the important thing is how well you respond to treatment. Some people can get remission from the first induction drug but others may have to try different chemo’s to get to remission – that, I believe, is more important than where you started from. Do ring the helpline they can explain everything and you can ask them anything – they have a wealth of information and can help advise you what you should be asking from the consultants. This is all a huge learning curve and so try and take it one step at a time – don’t look too far ahead – concentrate on seeing how well the treatment goes – velcade is known to be particularly good for light chain myeloma and educating yourself on all things myeloma. Try not to look at a lot of sites as it is scary and you will come across survival rates that are out of date with the new drugs on offer today. I only use this site and the US Myeloma Beacon site – that is very informative also. Best wishes,
Rebecca
Yes you are so right, I do feel tho it is a shame that we are not automatically helped with the armour to deal mentally with a cancer diagnosis. I have read a lot and thought I practiced “mindfulness” very well – “choosing” to react to things positively and choosing to do things that make me happy rather than get bogged down with things like work etc. However, recently I have begun to think that in doing so I have changed personality quite drastically – for me its for the better – but others think I have “shutdown” emotionally on some aspects that makes me not “the real me” anymore? I do not really get upset/angry about anything – if you relate things “in the great scheme of things” everything seems so “trivial” and not worth getting upset over. Sounds great but was accused it was unnatural and “Stepford wife” was mentioned! – serene, no longer short tempered, much more easy going – I like this new me but to some others this shift in change is hard to take and don’t think its normal? Which goes to show that even if we achieve the ability to adapt to change and evolve those around us may not be moving forward with us ) My husband is, naturally, much more stressed and fearful than I and I guess that is because when I am gone that’s it for me – but for him it is a future filled with the unknown and walking this path alon. Since diagnosis I like to collect quotes as I did read a lot of books initially -I still weekly flick through my quotes as they have all helped me through various stages of the game. Helen Keller said “When one door of happiness closes, another opens, but often we look so long at the closed door that we do not see the one that has opened for us”. I am going to add that in my funeral speech (when I get round to doing it) to remind those who are left to seize life.
Hi Vicki, so really sorry to hear this about Colin – we are all routing for you both – and please don’t feel this forum is for positive stories only – as there are 2 sides to the coin we are tossing and it is useful for everyone to remember that. I feel in total denial of death as I live my life as normal but it acts as a prompt not to be complacent in our life plans – as difficult as it is. I feel we are all in a myeloma prison camp – when we get remission and escape it sends great positivity and motivation to those still in camp and looking wistfully at the outside. When a member returns to be once again in shaackels it sends shudders and grief through those both in and out of MM camp. Those out, it serves as a nudge to get work/life balance right and re-evaluate priorities. Best wishes to you both,
Rebecca
Hi – I was on various pills that stopped after a month or so and kept up the antibiotics for 3 months only. I was told I had to keep the antibiotics for the full 3 months as the melphalan destroys the lining of the lungs so you are susceptible to chest infections. Not had one yet now 18 months post SCT – fingers crossed. RE vaccinations some have them again after a year but I have not – as my little hospital never gets a response from Leeds where I Had the SCT. When I was in Leeds, however, I remember the consultant debating that your stem cells remember so you are not necessarily totally immune free from things. Anyway, have lost interest in keep asking so none for me. Perhaps a year is a trial at your hospital? they are so different. I asked for ice to suck – as everyone advises – at SCt and Leeds didn’t have any. They had run out but was told they had only recently introduced it as in the “older” days ice was considered dirty? Anyway, as with everything I think you are either predisposed to mputh problems or not. I had no ice and no problems – again I guess its a similar path but how we react is very individual. Bet wishes
Rebecca
Hi Brian, I had my hickman line in a while pre SCT and worked up to the day I went in – never had any advise on not working whilst it was in but I did have it flushed out once a week wherease I think some other hospitals do it once a fortnight? Funny how different hospitals have different view points. Good luck.
Hi – sorry to hear about the delay I know how hard it is mentally to brace yourself and gear up to it to then feel totally deflated. I had my SCT is Leeds and was told it would be 2 -3 weeks once I was on the waiting list after I had a hickman line in. I had to phone each day and it took 8 weeks and my consultant phoning that hospital also! This meant I was in over Xmas also but by the time I went in I was a nervous wreck – there is only so many times you can put on a brave face and brace yourself. I would suggest you re-plan to use this “bonus” time to have lots of final treats etc and enjoy some sunshine etc.- try for a positive “spin” on it – I am sure you are used to that now also. It will come soon enough and the anticipation is, I feel, as bad if not worse than the process. Let the others plan everything to do with the hospital stay and you try hard to blank it from your mind concentrating on some good distractions. As they say this is a marathon not a sprint and we all need/learn to develop mental techniques/distractions to overcome the unforeseen hurdles sprung upon us. Good luck with it all it sounds like a success already if you are in full remission and the SCt will hopefully strengthen/lengthen this for you. Once home, without hiccups you’ll be feeling pretty much back to normal in 3 months and hopefully you’ll be recovering mainly in the garden with a bit of sunshine and not having to worry about germy people with coughs/colds – a nightmare SCting in winter. All looking goof for you. Be kind to yourself.
Rebecca
Well my MM no.s reflect greatly on kidney function – if my light chains moved from 60 6o 40 I would get a bit more kidney function back – but it could only go so far. I averaged 26 pre harvest the harvest knocked MM back a tad and I went to 28. SCt took them to 30 with light chains in normal range and they are now averaging 32. I would imagine you would find an increase in function if you get to normal range as when my light chains were about 120 I was at 16%. I put this down to the 14:16 translocation known to impact badly on kidneys for some reason. What are your cytogenics? What mortality are they quoting at 6%? is the same one I got? There are people who have had it done whilst on dialysis and at Leeds I was told one person came off dialysis after the SCt. I did used to chat to a man with kidney issues and he knew someone who was on dialysis and his kidneys gradually improved to a point where he came off it – but it took 3 years after SCT. He told me that kidneys can improve in time (despite medical opinion!) and he gave me some diet tips to aid kidneys and his renal charts which showed a significant improvement over time which he accredited to his diet and supplememts. I’m afraid I’ve just decided to go back to normal life and a normal diet rather than a kidney friendly one as my haematologists tells me I don’t need to be on a special diet. I am not convinced but never see a kidney specialist to confirm. SCt may bring your MM down and raise your kidney function or it may not – we never know until the deed is done. I was so well before SCT my husband didn’t want me to take the 1 in 5 chance – it’s hard to gamble everything when it’s not a sure certainty. If I was you I would pay private and quickly go to another hospital/region and ask for a 2nd opinion – this is the ultimate thing you are gambling with. Professor Gordon Cook at Leeds was my 2nd opinion and I had my Sct there – he gave good explanations as to why it was worth the gamble but I’m afraid I can’t recall how he told it (blocked it all out now I think).He is quite well known/revered in myelomaland, I believe. Whatever you decide I believe you must be totally convinced it is the right thing for you – I can’t imagine going through SCt without that dogged belief that it will be worth it in the end. If I didn’t have that I wouldn’t do it. I used to say I’d have another one without a second thought but I think I would listen to my gut, like last time, and go with that – hardly scientific but often your gut instinct (if not borne out of fear) is the right choice to do. Good luck,
Rebecca
Hi Amanda, glad to her you are doing OK – I remember talking to you when diagnosed as we were very similar stories but my kidneys are now at 33 (just 18 months post SCT). I was hell bent on SCt regardless of risks but you do right to question it all with such a low kidney function. It took me 3 months to feel back to normal and get some fitness back so recovery was Ok. I had minimal residual disease of .3% before it and the process didn’t budge it. My light chains were in normal range before it, I think, and normal range after it – has it prolonged remission for me? who knows as I don’t know what it would have been without it. Whilst I have felt well and fit after it my bloods have only just started looking ok – so took way longer than they should have to look anywhere near normal – due to reduced kidneys? don’t know? Did the SCt really work or did I go through it for little gain? don’t know. But I did it more for my sanity as I could not have been plagued with the “what ifs” if I hadn’t had it. It was proposed to me by 1 hospital as I have high risk cytogenics 14:16 translocation – known to really impact the kidneys rather than the bones – I only had 1100 light chains and went in at 5% – think typically kidneys are not damaged until they get to an average of 7000! Factors for you to consider are:-
* What are your cytogenics?
* What mortality do they quote you with such a low kidney function – as an infection following SCT could surely wipe them out now? I was quoted 20% with my kidney function (then at 26) a 1 in 5 chance! but the consultant thought without it I may quickly become a statistic as more treatments/sooner impacted on my kidneys. They thought it was worth the risk – BUT it is our risk and not theres remember.
* What remission is typically average on your chemo treatment? mine was only velcade and dex not known for a long remission – think 6 – 9 months is an average quoted so SCT was needed to lengthen it and let me tell you 18 months totally drug free and normal QOL is fabulous.
* So far has your MM been difficult to treat and have you used up some treatments already and still not down to normal levels? I ask this as you must have had more before you current ones in the length of time you’ve had it? Therefore is it aggressive? and do you need to throw the kitchen sink at it to normalise? or are you facing the prospect of continuous treatment/maintenance if it doesn’t normalise?
Don’t envy your decision and would really question the consultants rationale for proposing it. Good luck with whatever you decide – all I would advise is put any “fear” to one side and do a pro/cons sheet and look at it as though it is a business proposal – as they say “life shrinks or expands in proportion to ones courage” – but lets not be kamikaze about it! I would also post the question on the Myeloma Beacon site as this a real wealth of information.
Rebecca
Hi – Don’t know if this is the same as I have no bone involvement (I believe) but after SCt if I had a little walk my legs felt as tho I had walked 20 miles and this carried on for 3 – 4 months diminishing in time. Any little exercise on any part of my body gave the same OTT reaction – shoulders, arms. My feet really hurt when I walked on them 1st thing in the morning and this is the only thing that is still the case but the pain has diminished to just feeling achy/uncomfortable and then they are Ok after a while. The body takes a massive hit and guess it takes a long time to recuperate. I went to the dentist 15 months after SCt and was told my gums were still swollen which he attributed to the chemo. I think Jan once said her dentist said it took her 3 years for her gums to recover to normal!
Rebecca
Hi sarah, sorry to hear about your dad – how old is he and how was he diagnosed? I have not had VMp so cannot help on that front, however, please be aware everyone reacts slightly differently to chemo and so you may get all or hardly any of the side effects. MM is a very unique and individual disease. This is devastating, life changing news as you will never be rid of it – yes he will get remission but you will then be in the next phase of monitoring and wait and watch for its return. This is a marathon not a sprint. My advice to you in how to be the best daughter is – read and learn as much as you can – use this site and the US myeloma beacon site only. Learn what you can but do not tell your father everything you learn – by that, I mean, let him run his own race – he may not want to know everything, he may want to just be drip fed as treatment progresses and concentrate only on his treatment at the moment. Perhaps let him know you are researching and get him to ask you if he has questions. We all react differently and there is always an element of denial and not wanting to know it all – just what you need to know at that moment in time to get through that particular hurdle. Before you go into consults (I used to record them) get him to verbalise what he would like to know and write it down. The bone marrow biopsy will give you a cytogenic profile which will determine if he is low/standard/high risk. You may want to know this but your father may not so make sure the questions asked are those your father wants to know the answer to only. Also, when you have cancer it can become all consuming and the main topic of conversation when everyone knows but he may not want to talk about it much. I have never really discussed anything about it with anyone but my husband – and even that’s limited and that’s because I never wanted it take over my life – I want to lead a normal life and that does not involve giving C anymore air time than I can possible can. We all react differently but make sure your father is in charge and owns this – it his disease not yours and I suspect he may want to protect you as much as possible from the outfall of this. What got me through treatment was short goals and lots of little treats – nothing much – could be going out for coffee etc but taking time out of routine to do “nice” things, family things, outings. Talking about it never helped I found it depressing and dragged me down but a nice walk, meal, cinema etc uplifted my mood and made everything copable. Good luck,
Rebecca
Hi sorry – only pop in now and again (I am just 18 months from SCT). !8 months is a figure from the US Myeloma beacon site, think I have read someone on here recently debating SCt following velcade treatment that 18 months extra was quoted by his consultant? Mine gave an average upto 2 years but there are those that get much more etc. All very individual and perhaps influenced by our cytogenic profile of low/standard/high risk. I am high risk so am pleased to have got 18 months to date drug free and counting. MM is very individual – I guess even with the cytogenics card thrown in – I try and remember this. SCT is just like any other treatment option – it may or may not work at all, it may be incredibly effective, it may not be that effective but good enough to keep it at bay for a good drug free period. We are in the gambling business now, I’m afraid. I hope lady luck is with you!
Take care,
Rebecca
Fingers crossed all goes well for you now from this point on. So pleased he has got to this stage at last. Japanese proverb “Fall 7 times and Stand up 8”
Take care (Both of you), Rebecca
Hi Alan, glad to hear everything is progressing nicely and hope your 100 day test goes well for you. Sounds like you are keeping active and I think that’s the answer to a speedy recovery. After 6 months I felt I was back to normal fitness etc tho my bloods really took a very long time to look Ok. Be careful of a mental “dip” which seemed to hit me at say 6 months and I think it was because I resumed life/work as tho none of this had happened but whilst still thinking about it a lot – the transition from focusing on ending treatment and starting a new phase and mind game of “wait and watch”. As time goes by it does all get easier or, I guess, it becomes the norm and you get used to this 3rd wheel in your life. Enjoy and take care. Sounds like you have the option to have maintenance treatment or not – I wasn’t eligible but am happy to say I wouldn’t swap my 18 months with no treatment/drugs. Drug free is great. Enjoy
Rebecca
Hi Bernard, glad to hear you are doing so well – a very quick return to work – I could have gone back but chose to have 6 months off to focus on me/life/fitness as, let’s face it, we have been through a lot. I think it’s important now to not slip back to work focus etc and to consciously look at what you want out of life and a plan on how to get there for you and your family. Now 17 months on drug free I feel I am as normal as anyone and time is not more limited – I Know this is not the case but when your are well etc it is easy to …not waste time but… lets say not utilise your time as best you can to make you/family as happy as can be. My outlook has changed a lot in that I try and do things I/family want to do rather than muddle through life (like it was pre MM) but again, it’s a different mindset and needs mentally flexing to stay focussed. I hope your objectives are your/families personal goals in life. It is a difficult balance when young – you don’t want to blow all your money doing what you want to the detriment of future financial security but I have found you don’t need to blow all your money to be happier. When diagnosed I tried to compile a bucket list as an objective but found I appeared to lack imagination as all I really want is to do things with the family and we have – not my list but more theirs but sharing in their happiness is I guess my objective – doing something together.I do, however, treat myself much more with “my time/hobbies” and reduced my work hours. The check ups do get easier as time passes and I now tend to gauge myself on how well I feel. I have even stopped asking for prints and analysing everything like I did for the first year – quite a breakthrough and my dr keeps asking me to go on 3 monthly checks (currently on 2 months) and I keep saying I’m not ready to do that yet but have told him I will consider it soon! Enjoy this time – don’t waste it – aim high and stay focussed. Without sounding weird I have found hiking in the countryside a great calming influence and every now and again I like to walk on the coast and see the sea. It always appears uplifting on many ways. Now’s the time for “whatever floats your boat”.
Rebecca
