Hi Linda, I had my SCT at Xmas (literally) at St James (really hated the food and the freezing room) and it never really did much more for me MRD was the same as before at .3% etc. I was in very good partial remission hoping the SCT would get me SCR but the gamble didn’t work. I wasn’t on a trial so ineligible for maintenance but discussed maintenance with Prof Cooke who made me see maintenance as 1- taking drugs/effects/prolonging treatment when we all want a drug free period 2- it could be viewed as using up a drug before you actually need to use it. Most people never get SCR most people get VGPR and dependant on how your MM is with you this can give you long remissions. There have been people on this site who got SCR but it only lasted 2months..1 year..think Tom was in SCR and is just posting thinking its back after 14 months so…who really knows – this is an individual disease and each of us will not follow the pattern of the stats precisely. When you relapse you will be given maintenance then to keep it at bay so try and enjoy a break from it now. With regards to feeling down look at the post in the under 50s category Life After Transplant and there is a much bigger sharing of thoughts on the Myeloma Beacon US site. I think you will find these posts very helpful and give you thoughts on how to move forward. I have had to work at my mental state these past couple minds with the same discipline I had when undergoing treatment and now feel I have climbed up what was a very slippery slope.
Rebecca
Rebecca
Tom, sorry I have no advice and sorry it’s back – guess all I would say is regroup mentally and prepare for the next round – were you on maintenance also?. 9 months post SCT and think my figures are not as good as could be but not alarming. I have started a meditation/mindfulness course as I feel I was strong during treatment/SCT, but do not feel I have the same strength of mind for another round just yet so I am working on my mental state to make me feel as strong/confident as before. I know you have your own mental strategies but would suggest you “brush up” on any lost discipline that seems so easy to lose when in remission. Am sure you will seek different consultant opinions to formulate your plan as you will have multiple choices at your age. Best wishes
Rebecca
Thanx Ali, have just ordered some off ebay – am a bit loathe to cut what l ittle I have but will bite the bullet to get rid of this tight perm look. Rebecca
Dear Eve, so sorry to hear this news, you are both troupers and I hope you take great comfort in the knowledge that you could not have done more for him and eased his passing so fantastically well. You have helped so many on here with your postings, including myself, that please do not feel you can no longer contribute on here as you have a wealth of experience and good advice that can help others on this awful journey. I hope you are able to soon apply your no nonsense attitude to ultimately forging yourself a new and happy road to follow as it is time to concentrate on yourself now x
Rebecca
Ha ha – yes some vain people will try anything – but it doesn’t do much for the hair. Walking outside sounds fabulously healthy but entering a shop ? maybe meeting strangers/germs! and hope you wasn’t thinking of buying a paper and touching dirty germy money?! hasn’t your wife took it all off you yet as it’s not good for you? Walking outside is good for measuring distance tho’.Think the people on my Close thought I was a lost soul as I liked small circular routes to begin with and in case I felt funny – but probably just looked funny.
Hi Stanley, good to hear your still in one piece tho’ no doubt a bit slimmer! The memory of it all goes very quickly but reading your post reminded me of how dire constant nausea is – I hated the mornings when they made me move out of bed to make it as any little movement seemed to trigger off sickness – nausea never went at all. Don’t know how common this is but I had really really bad sickness (and the rest) some 2 weeks after being home which floored me again. But now your home concentrate on recovery and moving as much as you can – altho people say listen to your body – which you must – I also feel pushing yourself a little bit more each day helps you quickly regain fitness levels. it doesn’t have to be much at first as just pottering about the house is a big step after being in hospital doing nothing. I know when you first come home you feel fragile and somewhat vulnerable so it is easy to not do as much as perhaps you could – especially with all the fuss and special attention you get! – but the sooner you set your sights on fitness and recovery the sooner you’ll be over all this. Just make sure that each week you are moving forward and set goals (nothing major) to monitor progress. I found when I came home I walked like a very elderly person. very slowly, and it even took a lot of effort to pick up the pace back to a “normal” pace. Your body has taken a real battering so be kind to yourself but not too kind. (I say this in the knowledge that when I had my bad sickness again at home I could barely lift my head to drink water let alone go and get a glass of it but when I was about to be sick I instinctively dashed to the bathroom like a greyhound out of a trap- so I could move and do things if I wanted to badly enough but I think I was mentally drained. When I realised what I was doing we resorted to tough love and I banned everyone from fetching and carrying and low and behold I could do it myself – the point is just moving about, up and down stairs etc is all exercise/movement in the grand scheme of things and every little counts when you want to recover quickly). I only say this as I know you are young enough to want to get your fitness back quickly. Best of luck,
Rebecca
HI, just type in Deborah bone blog in google and it’ll take you straight there
Hi there and sorry you’re here but what’s done is done and you can only look forward now. I thought it was a cruel blow being diagnosed at 50 but at you’re age it just beggars belief. At Leeds I was told their youngest patient was in their twenties and contrary to what you may think getting it younger does not mean it is anymore aggressive it’s more bad luck. It sounds like your Dr was on the ball as being so young you would more than likely have otherwise been diagnosed at crisis point with ever lasting damage. I guess the positives you have is your age and fitness and whatever route you take you will always have the allo transplant as back up which could be curative but, as with everything, is not without significant risks. I am sure you will sail through chemo physically but MM is a real mind game as the “battle” is never won you just get to stalemate. So I guess I would advise work on your mental strength strategies and mindfulness as this is what will really get you through it. Exercise got me through it (first round only) and always remembering that “worrying does not empty tomorrow of its troubles, it empties today of its strength” – mental discipline is the key to not letting this ruin your life so stay strong and positive. What chemo are you having before your SCT?
Rebecca
Hi, you may find Deborah Bones blog interesting as she has had dt-pace quickly followed by a recent SCT and you may find it useful/comforting that she is coming through it all OK tho it hasn’t been a walk in the park,Fingers crossed.
Thanks tony, yes I think that’s the only solution after researching the net the only way to get rid of chemo curls is lop em off – however I have waited so long for 2 1/2″ of hair this is yet another cruel twist and cannot bear to do it until its much longer. Thanks
Am sorry you are here and unfortunately you have just had a taste of how myeloma world works. From what you say I gather you have mm but currently display insufficient symptoms to warrant treatment – this is good – and you will be monitored periodically to ensure that the moment MM becomes problematic i.e likely to cause bone or kidney damage you will commence treatment – this is good also. As you read up on MM you will note some key points – it is incurable but treatable so your life will now be a roller coaster of remission and relapse in the knowledge that treatment options are not finite and are limited as the cancer becomes immune to each new chemo drug you use. So, no treatment now is good – save the sweeties in the jar until you actually need them and enjoy life without chemo treatment and their inevitable side effects. Be comforted that you have not been diagnosed at crisis point i.e. kidney failure or broken bones and that they will not let you get to this point – so already you are in a very good position to fight this. You can be asymptomatic for a long while so ensure you make good use of this time for travel etc which is likely to be curtailed when on treatment. This is huge to take in and will take a very long time, if ever, to get your head round it. Normally, I would say to newbies to learn what you can about it, use this and the US myeloma beacon site for information, but as you are only being monitored at present I think I would just try and put it to the back of mind until it actually starts happening (easier said than done I know) – it’s probably less scary when you are having to live it than reading about what will happen in the future and, importantly, when you do start, it can be all consuming mentally. The one thing MM does require is strong mental discipline and a positive attitude, I gather you want to start treatment to get rid of it quick but unfortunately this is not how it works with this type of cancer and time without needing treatment is often the goal we all eventually aim for. As well as using this forum I would also use the helpline as they will flesh out the bones of what your consultant has told you and you can ask away , anything and everything, without feeling silly or that you’re running out of consultation time. Ask away here also as inevitably there is someone in the same boat. Kind regards,
Rebecca
Hi Carol, sorry to hear about your problem – I would never go to my Dr about anything I thought may be related to SCt etc and have been told I can either go to my GP or ring my consultant – I will never bother with the GP as how many patients do they have that have undergone SCT? I would at least ring the Specialist nurse to get their take on it. Once again, reading yours and Michelles response I feel slightly uneasy that I was on antibiotics for the 1st 3 months then nothing – have never heard of Septrim is that a type of antibiotic – I def didn’t have that. Now I wonder how my lungs will survive a winter at work without a helping hand – as we are similar in post months what is your neutrophil count as mine have only once gone above 2 but then dipped back to about 1.8 which they say is ok? but is just under range.
Rebecca
Rebecca
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
