thanks Peter, But I really hate it – how long did it take approx. to straighten out? I have already accepted going from blonde to extremely dark – which I now love – and think I could cope with a short chic look but those damn curls/waves are getting in the way of any hope of chic!
Hi, sorry things aren’t working as good as they should for you. My understanding is you can re-use a drug if it worked well for you , by that, they mean a good remission period. It would appear the MM is hard to treat well and dt-pace is very harsh but could be very effective with its cocktail of drugs. I guess they want to hit it hard and progress quickly to SCT to try and consolidate the treatment. The more drugs you have in the cocktail the more likely it is to reduce numbers and I think there’s about 5 in dt-pace? With regards to financial implications I am quite sure dt-pace comes out top of the price list as its newer and contains more drugs – CDT has been around as a standard treatment for a long time. I believe you are also an in-patient for parts of dt-pace and the added cost of that. If I were you I’d want to throw as much as I could at it now to get the numbers down/stay down – even tho this means very harsh treatment/effects. Does your husband have any cytogenic abnormalities to consider in your treatment plan? Stay strong, you are on a very bumpy road at the moment but things can come good. I think you should trust your Consultant, they are offering you treatment many don’t get offered so at the moment I think you have the availability of the full MM armoury at your disposal and if you feel you want a second opinion ask for one and choose a top specialist in the field – this may put your mind at rest. Equally, ring Ellen on the helpline and talk it all through as she can often explain the reasoning of their decision making process and flesh out the bones – so to speak. As Winston Churchill said “If you’re going through hell, keep going”. Good luck
Rebecca
Hi Anthony, so sorry to hear your news – 10 months is just not enough. I had velcade and dex for the full 8 cycles before I had SCT. I had it as a once a week jab, no gaps in treatment – believe most do a twice a week treatment and a weeks rest after 3 weeks, I think. I found it quite kind with just tiredness getting moreso as the months went by. Velcade is well known for peripheral neuropathy so be sure to mention it if it becomes an issue. I only got it on the last couple of cycles and not much. It is known to act very quick reducing numbers quite dramatically in the first 2 cycles then it will slow down a lot. Velcade is also thought to be good for working on cytogenic abnormalities. I think the big problem with it is it is not known for long remission once you have stopped – tho’ having said that the helpline told me they have known cases of 2 years remission. I would go for a trial if at all possible and save this one for later and try to get a better remission period but having said that I found I could lead a normal life with it just fine, albeit tired, and I think sometimes if your numbers reduce they can keep you on the full 8 cycles worth but spin it out a bit with how you are given it. I had it before SCT and would have been more than happy to just continue with this and the dex for a lot longer but, as you know, we are all different. I am sure you will find it much easier than CTD and if it doesn’t work I think they can add in the Cyclo-something drug to boost it. Basically, I think it either suits or it doesn’t, dependant on if you get PN with it. Good luck
Rebecca
Hi Pauline, since you started this post I have thought about it a lot because I was in a bit of a quanderry about it myself but I think I’ve cracked it now. when I was on treatment I was highly disciplined in my mindset and blocking out any negativity, highly focused – exercised a lot even when very tired and I think this got me through it, was very kind to myself and had a little treat each day (very selfish!) be it coffee with a friend etc. After transplant I was highly focused in getting my fitness back – done – went back to work and I think the problem is I have tried to resume life pre-diagnosis rather than post transplant and therefor. have got lax with my mental exercises Since you posted I have gone back to my disciplined approach re mindset and exercise and feel great. I joined the gym again and forgot a song that I played relentlessly throughout my treatment period/in the car to treatment/ when I felt down/gym – get the jist? Anyway played it and ran and ran and felt so strong again I forgot how good exercise and the power of music is. It’s Gabriella Cilmi “ON a Mission” and is very fast, powerful, lyrically great…
I am a woman on a mission whoa
Nothing can stop me, I’m stronger than ever
I’m gunna see this through
I am a woman on a mission whoa
Whatever it takes I will do what I gotta do
etc. I have gone back to exercise with a vengeance – which I love – playing my music and banishing any negativity. So I think whatever made you feel so strong during treatment you have to resurrect/continue and enjoy it that bit more without treatment dragging you down. I have even gone back to being slightly more self focused on the little treats as well! This is not a sprint but a marathon so we can never stop maintaining our fitness/focus. I do hope you download this song, blast it in the car, on a jog, walking etc I had forgotten how much I had relied on it. so I guess you need to use what tools you created to get this far and continue with them. Good Luck Rebecca
Hi, Glad to hear such a decision is not imminent – I am always reading “things” for the back of mind for future reference and I have always been concerned that I have heard of some who have experienced heart/lung problems after the 2nd SCT which they blame on the high dose melphalan but have read recently – US site – that they are trialling a “revised” type melphalan thought not to be damaging to other organs during the process – so hopefully things are improving all round for the future of SCT. I am pleased your wife wants to go ahead as that is one massive neon sign that life is very good and worth it all – so well done to you both for not letting this “thing” ruin your life – this is by no means easy and takes great spirit, discipline and lots of love to do it well – congratulations for achieving this in the face of adversity as I’m sure many go through life never experiencing the “heightened” experience/love in life, long may it continue, good luck
Rebecca
Mmmm….perhaps the whole treatment package also included the drugs to get you “stable” enough to then harvest (6 months of those is quite a bill)- more drugs/harvesting with weird machines/storage then SCT. I am sure if there was a co-payment agreement chemo to get you into a stable position would no doubt be funded by NHS etc. Strummer, I do hope you have cells on ice and also do not have to consider co-payment. I do not think I would personally go down the payment route as I would not want my dependants to have a “hole” financially unless I thought it was curative… but then when you are faced with it you/I willhave a different thought process… but I do admire you both – especially your wife to be willing to have a third. Good luck and as Winston Churchill once said “never, never, never give up”.
HI, there was a gent on here, would be from jan 2013 who had one at a private hospital through his insurance and I am almost sure it was around £100,00 – I do not think he chose to have all the treatment privately but just chose to have the SCT at the private hospital – which would not include harvesting etc. which may have reduced the bill. I know when I had my SCT I came home wondering why it would cost £100k so have always had that figure in mind for the actual SCT process alone. Sorry can’t be any more help – perhaps if you ring the helpline Ellen would know?
Hi Holly and Bryn,
Am so sorry to hear you have been effected by this and cannot offer any words that will be of comfort at this stage but it does get easier, you get harder, you cope and function and life goes on in an almost surreal way = sometimes I feel I am 2 persons! and no not on psychotic drugs. You are young and you have the best trials/options and resources on your side – this is no small comfort now but will be once you have learned much more about MM. Holly – trials are all different some aggressive chemo combos will be as an inpatient but many are not – most will not be but be ready to be tired and schedule help with kids etc. Youth is a big factor in how chemo affects you and both of you will sail through this physically, spend your time working on your mental strength. Make use of this helpline as they will talk to you in depth and you will feel comfortable in asking what you may think as “silly” questions – nothing is too trivial to ask with regards your health now. Consultants are good but never spend the time that Ellen will on this helpline helping you make sense of it all and pointing you in the right direction. Don’t be too hasty in making decisions about what/how to tell the children as it will all evolve in time – at the moment concentrate on how you intend to tackle this, who you want to tell etc. try and control what you can in the way that you want to. I would suggest you look only on this site and the US myeloma Beacon site for info – too much old news anywhere else. You will be told this countless of times but remember MM is a very individual disease so you are not a statistic and you will not follow the “average” statistic path – everything is possible and doable. Please remember “life shrinks or expands in proportion to ones courage” and this is the time to “live it large!” and by this I do not mean you are about to pop you clogs because you are NOT! just brace yourself, square up to it and knock it down!
Rebecca
Hi Pauline, forgot to answer your questions in your post – some people have MM that is measured by paraproteins – generally heavy chain MM and some have light chain MM – often without the paraprotein indicator (like myself) so is measured by the “light chains”. I am within range for the LC’s and within ratio which means it is normal/remission but is trending to near top side of normal. This would not normally be a worry but the light chains damaged my kidneys and I only need a little rise and my kidney function goes down – was 30 then 28 now 25 and light chains still in normal range! My white cells and neutrophils have taken a big hit as well but don’t know why.I worry more about my kidneys finishing me off than the MM but having said that my kidneys altho so rubbish don’t seem to adversely affect me doing anything I go to the gym, play tennis etc and don’t have any tiredness so if I live “in the moment” life should be hunky-dory – in fact just comeback from 2hrs of tennis after work! Mood is lifting a little now guess it’s the bloods/results that bring it all to the forefront of the mind. I never tell my family about how I really feel because I feel we all share the burden and don’t feel I/they benefit from sharing any misery further. In fact, I never told anyone (except hubby and 2 friends) about my cancer until I went in for harvesting for the SCt and realised I couldn’t explain it/SCT away as the usual “kidney problem” excuse! I have never felt the need to be supported and I never regretted the decision because it enabled me to lead a “cancer” free life for a year unlike when my parents and sister was told ( all other family are still in the dark)and then it always seemed to be in the forefront of everyones thoughts/conversation etc which I hate – I hate giving cancer “air time” the only time I do is on here – a habit I feel I should break also.
Hi, I don’t know if you will find a support group “comforting” because you are likely to be surrounded by much older people – they say 70 is the average age to get it? Whilst we are all in the same boat and all want to live just as much I feel I cannot really relate to the people in the waiting room – I have a young daughter not settled in life etc and think I would cope better in another 20 years time when I know she is ok/independent so a support group wouldn’t help me as we are on different paths of the same journey but I do hope you get something out of it. I am also wary of people “leaving” a support group as it affects me a lot when people who have posted on here leave.
Rebecca
Hi Pauline, I know exactly how you feel had my SCT at Xmas and am monitored 2 monthly but got my results today and was told I would be seen in September sometime – my light chains are in ratio but trending upwards and I find this bit is far worse than the before SCT bit. I guess for a year my focus was purely on getting to SCT stage (had problems getting there due to kidney damage) and I think I viewed it as the “end” of it for a long time and never really thought beyond that point. In reality you are striving for a goal in SCT but after SCT and the monitoring I just feel like I’m helplessly waiting/watching it creeping back and not even chemo yet to feel as tho you are doing anything positive in fighting it. I know I should be relishing being off treatment, normal quality of life and all but now I feel that that is the “norm” now like pre diagnosis and gives me little comfort. My mind set should be enjoy each day like its my last etc but mentally I feel like a deflated balloon and yet it is so much better now than when I was on treatment why am I not constantly doing a merry jig? I was always very positive throughout treatment and strove hard to retain a normal QOL. I guess now it’s like being a sitting duck when before I felt I was battling away – although in reality you only battle for your normal QOL rather than your disease biology. It definitely needs a different mind set for this part of the game and I know I will have to sort this bit out also. I was told that after transplant people generally benefitted from counselling and could become quite depressed but as I never felt this at diagnosis/treatment phase why would I consider it now? It’s very strange. Sorry I’m not being any use to you but hope someone with some good ideas write in – other than give yourself a kick up the bum and be grateful! tho’ this too doesn’t really do it for me now! Suggestions please…
Good luck, Rebecca
Hi, I have only had the injections in the hip prior to a BMB and if it starts to hurt they will give you another jab during the process – I’ve only ever had it hurt “a bit” when a different person did it. I was told that they have to sedate quite a few people first and have heard how one person screamed the place down during it – my understanding is you just have the jabs but if it is intolerable to you or someone is highly nervous they can then request to be sedated for further ones. I guess it’s all very individual as the nurse even said she didn’t know why one person feels extreme pain and the next hardly feels anything.
Rebecca
Hi Scott – as I have never been allowed access to the renal clinic, despite asking, have they told you how to preserve what you have eg with a special diet or kidney friendly food or anything? or is it just carry on as normal and no special diet will help?
Rebecca
Thanks for that info Scott, my kidneys are currently about 28 -30 egfr but when I SCTd at Leeds they said when I relapsed I could ask to come to Leeds for a second opinion and see if there were any trials I could get on as my small hospital wouldn’t know about any trials so I assumed we could still get on some? At 20% does that mean they’re thinking of dialysis? I spent a few months at 16% but it was never mentioned and to be honest I didn’t feel as tho it hindered me unduly – unless I was in shock for all that time – which is quite possible. Good luck with it there are lots of promising results and it is thought to be better on kidneys.
Rebecca
Hi, so sorry to hear your news. I don’t have AL but MM but …do things get easier? Yes over time in that you learn to live/function with it with, I guess, an underlying sadness that never truly leaves you for long but no-one else can see/feel it. I have a teen daughter and husband and we have just realised it is 2 years since I became ill with it – life has never been the same (obviously) but I do love/appreciate everything more but my husband/daughter?….I learnt very early to block any thoughts beyond this point because it makes life utterly unbearable if you don’t and the fact is you cannot influence anything so don’t waste your time torturing yourself about a future you cannot stop – and learn to live only in the present (mindfulness). This may sound a cop out/denial etc I don’t know, but it is the only way I manage and I manage it well. Neither of us like to talk about it/the future “it is what it is” so learn not to spoil today with the thought of the future – I guess until it’s almost upon you. Learn to block the future out and live solely in the present – it takes a while but you will quickly learn you cannot keep tormenting yourself mentally with it and if there are practical, financial things you need to have in place do so. Acceptance takes time and often it’s when you have mentally worn yourself out. Good luck and I hope your chemo goes well and buys you lots of time – good times filled with love, tenderness and ever lasting happy memories.
Rebecca
