Hi – as your father has plateaued with safe numbers not requiring further treatment then it is normal to come off all meds and hopefully resume a good quality drug free life. Unless on a trial which involves maintenance therapy we are not in a position in the UK to have that option. I have not had the option of small dose maintenance BUT on relapse of increasing numbers your father will no doubt go on a small dose of continuing treatment until that ceases to work – so I guess we get this option at some stage just not upfront without a trial. I am glad now I wasn’t given a maintenance option as even small doses of therapy will have some side effects eg tiredness, more prone to infections etc impacting on quality of life. I hope your father regains his energy levels soon (velcade is soooo tiring) and lives life well after his ordeal.
Rebecca
Hi Denise, what chemo are you on exactly? It is normal to get more and more fatigued as the cycles go on but….when you feel so fatigued – force yourself to go for a brisk walk and trust me you will feel instantly less fatigued. It is hard to believe but pushing yourself to exercise will lift your mood and energy levels. Give it a try you will be amazed how good you feel after it
Rebecca
NIck that is fantastic news and long may it continue. Thanks very much for sharing – we all need to hear positives along the way for a much needed boost
Rebecca
Hi Carole, Good luck with the transplant – you may have got the call by now which will negate this response but….I believe many people suck on ice for 3-3 hours or as long as they can stand thus protecting the mouth area and hopefully prevent mucositis. Those who do this and fon’t Get it assume it is the ice effect. I did not suck any ice and didn’t get mucositis so I think it’s an individual thing – you’ll get it or you won’t regardless. I was also wary that I did not want the chemo to be less efficient anywhere in my body. I did try sucking on ice before I went in but did not have the willpower to continue longer than a minute and luckily I had no problems. I have read a report that indicates whether you get neuropathy or not, with velcade, is in your genetic profile which explains why some can’t tolerate velcade and others are fine. In the future hopefully they can use this discovery to eliminate neuropathy but it does highlight – along with MM – how individual we are
Rebecca
Hi Elise, Sorry to hear about your mum. VDT Pace is a combination of bortezomib, dexamethasone, thalidomide, cisplatin, adriamycin, cyclophosphamide, and etoposide – so the addition of the last 4 to the VDT she was on. It is, as you can imagine by the sheer number of components a very harsh multiple treatment and is basically like throwing the kitchen sink at it – so should have good results from it. Mm is a very individual disease and what works for one does not necessarily work for another and it is a question of finding the treatment that works for you. Hopefully treating it very aggressively will lower her numbers sufficiently to then go straight for an SCT to consolidate it. Take care.
Rebecca
Hi Phil, Congratulations – love reading posts like this – whilst we are all different it’s great to hear the positives.I am just over 4 years post transplant with no treatment/in remission and get tetchy/can’t help but wonder how long it can last.
Hope you are supping some bubbly now and long may you continue to be in remission – hope to read your 8 year post next year
Rebecca
That sounds just what the Dr ordered, lots of distractions and lots of positive focus on the future. There is no doubt he will get through it but it is inevitably a long and winding road – he is young and fit – one of the greatest assets going into treatment but it is small consolation for having it so young. At 50 – and very fit – I wished I had got it at 70 and had 20 more carefree years before a more arduous task but as someone once said “ Life is not a matter of holding good cards, but of playing poor cards well”. One of my coping strategies was collecting motivational quotes and my mantra one was “worry does not empty tomorrow of its troubles, it empties today of its strength”
Hi – So sorry to hear your news – I was 50 when diagnosed has velcadd n dex followed by an SCT and remain in remission to date and physically life is back to normal. It is no comfort but is age is a very good factor in treatment/options. If you choose to look at survival stats beat in mind the average age of diagnosis is around 70 where there are other health issues to contend with also. He will sail through treatment and the SCT will be a breeze for him due to fitness levels etc. Also, due to age he has so many more options available to him like a donor bone marrow transplant also. The important thing for you all to grasp is he is in this for the long haul – a marathon not sprint. So no rush to know everything now – trust the consultants on treatment options – what you all need to concentrate is your mental health. The sooner you all find coping strategies that work for you the better, MM by its nature of remission and relapse cycle means you have to learn to live with this well and banish the inevitable negative thoughts. I have tried lots of things – mindfulness is very effective, exercise to me was my saviour, for others it could be focusing on hobbies, pleasurable things to outweigh the down times. Also, whilst you may wish to research everything do not offer information to him – let him go at his speed- be there if he wants to talk about it and be informed for him but only when he wants the information. I couldn’t look at the internet for a long time and my questions to the consultant were asked when I was ready to take the answer. On diagnosis I was in shock, in mourning for the life I had and the future I envisaged, it takes time to come to terms with it. Make no mistake whether in remission or relapse it is now with you all forever so focus energies on how you can all mentally cope/adjust to this new scenario. During/after treatment I always had little treats planned – nothing costly – just some quality “me” time doing what I enjoyed – it is all a balance. Be there for him when he wants it – be ready to kick him up the bum if he starts wallowing (no kid gloves) and seek out the positives throughout. This really is a mind game so get your game heads switched on and you’ll all come through it fine. From a personal point of view – I only wanted positivity – no tears (save that for bedtime) – no sad faces – I wanted a pull yourself together attitude “it’s hear and we’ll beat it” philosophy.
Early days, no rush, be calm, consistent and positive
Rebecca
Hi Ann – thanks for asking I am doing good – in a week I will be celebrating 5 years since diagnosis and 4 years post SCT – still in remission and drug free! Must admit as time goes by I get tetchy thinking when will my run of luck will end – as always with MM mind games when you relapse and mind games when in remission(tut) but I’ll take it! I am not on Facebook and haven’t heard from Andy and Helen for a while but both were starting a new treatment regime. Hope you are well and wish you all the best now and in the New Year (and yippee we have another year clocked up!)
Rebecca x
Hi Maureen, so sorry to hear of Ian’s passing. You helped him throughout it all and right up to the end and no-one can ask for more from a partner. I hope the rest of your life is filled with happiness, laughter, adventures and peace. I already get the feeling you realise living is a privilege that musn’t be wasted so I know you’ll be okay.
Rebecca
Hi Sara – my biggest coping mechanism during treatment was trying to control my mind and stop pondering on “what ifs” Andrey and take it Day to day. I started saving motivational quotes that became my mantra throughout in controlling my mind to “not go there” and stay in the moment. The main one I used was
“Worry does not empty tomorrow of its troubles, it empties today if it’s strength”
And as a reminder that you are in sole control of your mind/emotions – regardless of circumstance –
“I am the master of my own thoughts….my mind will only obey me”
I don’t need them now in remission but when I get lax and look ahead I bring myself out of it now with
“When life gives you a hundred reasons to breakdown and cry, show life that you have a million reasons to smile and laugh. Stay strong”
As soon as I was able I used e revise to regulate mood/thought and both you and your mum will find something that “clicks” with you. The important thing is that you show no fear and radiate positivity to your mum as this is so calming znd reassuring even when in a very dark place and tha balance of life can be tipped either way.
Take good care of yourself do you can take good care of your mum
Rebecca
Hi Sara – Mm is very individual together with your health to start off with/fitness/robustness. One week it can look bleak take a treatment that suits your MM and you can pick up and rally very quickly. What may appear very aggressive MM is only like that if you can’t quickly find the chemo that will work for you and yours. At 50, I was told a long time later, by my chuckling consultant (he’s lovely) they didn’t expect me to survive/leave the hospital – 5 years on I am doing great ( for now). I have a very aggressive MM on my kidneys – even with just a little MM – however it does not (yet) appear aggressive to treat so whilst the Mm is kept at bay all is well. Everything is so individual don’t believe anything negative until it actually proves to be true for your mum. Positivity and belief makes a huge difference to all aspects of treatment and living life well. Believe that your mum has turned a corner and you will both fear less and live life better ( it is infectious!) if it turns out not to be true you have at least managed to delay the sorrow and prolong the hope and happiness. Chin up and a big smile on really helps until you can manage it for real.
Never stop hoping
Rebecca
Tony – You are an inspiration – carry on carrying on!
Rebecca
Hi Richard – sorry to hear about the Rev but let’s hope the next one is even better – will be interested to hear of option availability in Germany. Never ceases to amaze me how individual it all is as we started at the same time – we are all heading in the same direction but going along different routes/twists n turns – here’s hoping we enjoy a long meandering path, with minimal bumps, at a snails speed only!
Rebecca
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