Hi Susie, I wonder the same as I do check regularly to keep updated re. people from old. I am not on Facebook as feel bombarded with such social media so find it a shame that there are few posts. I do not like the new website layout (seems new/different on my phone now?) but continue in case people give updates. I fear this forum will eventually be unused/redundant which is a shame. Not sure what the solution is but when new people come on and see such few posts they will automatically assign to Facebook.
Hi Anne, I would just like to reassure you that after SCT you can resume a near normal life. I was active pre diagnosis and am more active now as I have chosen to reduce work hours to enjoy life. I was diagnosed at 50 and it took me a year to get to SCT – I am now 4 and 1/2 years post SCT without any maintenance – drugfree – and life is good. It took me probably 6 months to get back to full fitness and playing in tennis matches again. I tried to stay active, playing tennis and going to the gym, throughout chemo until I had the Hickman line in for SCT. I had a gap of 4 months from last treatment (velcade n dex) to SCT. As the drug effects wore off I felt I had been playing tennis in lead shoes with everything slower and harder but once treatment stopped the fog gradually lifted and made me hopeful for life after SCT. I have never regretted it and whilst unpleasant it is doable in the grand scheme of things. Good luck and make lots of plans for next year when you will feel like you have got your life back on track.
Rebecca
Hi Paul – good luck with your SCT when it comes – it really is just another treatment option that gives you a rough couple of weeks then on the road to recovery.It’s not pleasant in parts but it is all very doable with a relatively short length of unpleasant time. Your recovery will be so much easier and quicker at 51 yrs if all goes to plan. Some people don’t get much sickness and hospitals do try different anti sickness meds to stop it. In hindsight it wasn’t as bad as I actually imagined it to be and wouldn’t hesitate to do it again. If you have ever had proper flu – I’ve had it once many years ago – I would liken the experience to that – Pretty gritty but you’ll soon get over it.
Hi – Whikst maintenance is only a given when on a trial when I discussed treatment options st 1st relapse (tho not there yet!) I was led to believe I would be on low dose thalidomide or say revlimid until the treatment stopped working – which is basically the same as maintenance. Whilst we do not get offered maintenance up front in the Uk (unless on a trial) we will get it at some point down the line as a treatment option in its own right. You could argue getting it up front is using up an option available sooner rather than later although I recognise the research that highlights it is more effective in combo with 1st treatment – either way we will get it at some point
Hi – 30 days is very soon after such a big procedure. A consultant likened it to having open heart surgery so that should put it in perspective. Your immune system will be up and down as it reconstructs. I was very up n down for quite a while but once I’d turned that corner I went from strength to strength and would say back to full fitness in 3 months.It was a rocky road for a while – it is a major procedure that has permeated your whole body/being – try not to be impatient but also set small goals each day to strengthen and gently push yourself. Listen to your body and rest when necessary to aid recovery as you have plenty of time now.
Rebecca
Hi Linda – great to hear you had a fabulous time – I come from a family of long livers with no cancer connections. I was diagnosed at 50 and whilst light chains were relatively small they aggressively attack the kidneys (14:16 translocation) I had chemo for 8 months Sct then drug free currently at 4yrs 4 months post Sct. I do get tetchy now wondering how long my run will last so love to hear from others who have enjoyed long runs of drug free time. Long may we continue!
Hi Linda – Many congratulations and hope you too are having some bubbly! It is great to hear that this achievable- posts like yours are much needed boosts to us all. Enjoy your celebrations
Rebecca
Hi – The hospital will arrange a freecwig/fitting pre losing it which will reassure her how fab they are. As I kept my illness a secret I was hell bent on having good wigs – I got them online where you can try n return but there are shops in cities where you can try etc. I spent a fortune on them as I chose to match my hair and shoulder length style – big mistake. Whilst they look fab if they are shoulder length and rub on costs etc the fibres wear quickly and need replacing or cutting a lot. Best to go for a short cut before losing it so you can have short wigs. I wore mine from getting up to going to bed and found them fine to wear but you need the “tights” on head cover to keep from moving/comfort and if you exercise there is a sweat inlay also. Natural hair ones are expensive and require doing like normal hair – the others are cheaper and much better as you pop it on and look good to go – they may look shiny when you buy them but they soon lose that when wearing them in a normal environment. I loved and miss my wigs – never a bad hair day and never had my hair look so good! Whilst I originally wanted a natural hair one I know after SCT I couldn’t have messed about styling like normal hair. I was scared of having a wig but as soon as you try one you realise how good they are. Mine cost £350 which was an expensive one but matched my real hair sand more importantly made me feel good.
Hi sorry to hear your news and I know how overwhelming this is but there is no big rush to know everything now as you are in this for the long haul. My advise is for you to read all the info etc found on this site re treatments, MM etc but only share the info when your parents ask – it is a huge shock and often you only want to know things when you feel ready so go at their pace not yours. Have some good news snippets of info when appropriate to encourage them.The hospital will go through side effects and you can read up so if your father experiences things you can inform and reassure. Personally I was never told of side effects to things (small hospital) but I think it was better as I was not waiting for them or worrying over them. Just take each day as it comes and be ready to lift spirits, encourage, inform, as appropriate. If you go into consults with them write down any questions they want answering beforehand – do not ask anything you want to know but your parents haven’t expressed a desire for. This is very important as it takes a long time to feel comfortable with it all so it must be at your fathers pace. Some people just want to hear “they are doing ok” others want to analyse all lab results etc – whatever works for them. You can, of course, request copies of results and check trends etc yourself if it helps you and then when they want to know something you may have the encouraging news they need to hear. Whilst it affects all the family profoundly the person who has it must be able to steer/navigate the journey – we have very little control in the scheme of it all but this is one thing we can control. MM is a very complex and very unique cancer and no 2 people react the same – it is important to remember this when looking at statistics/treatments/side effects. Over the coming months you will no doubt learn/understand a lot about this disease but the important thing to recognise now is that you have the time to do it slowly- it is a marathon not a sprint – you must be the cheerleader on the sidelines spurring them on. What I found useful was planning little treats/outings etc something that took my mind off it all and put a smile on my face.
Take care
Rebecca
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
