Hi All,

I’ve started taking Curcumin today. I got them at “just vitamins” and hope they work, not only in the hope that it keeps my PP’s down at present levels, but also for my quite severe arthritis which has been very painful (spine) since I did some gardening. Most of my discs have gone together with vertebral slips almost cripples me at…[Read more]

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. S…[Read more]

Hi Teresa
That’s really interesting and I shall bear it in mind when I next require treatment, which I hope will be a long time from now.

I’ve heard good things about Southampton Hospital so sounds though your hubby is getting the best care.

I wish him all the best

susie

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…[Read more]

I’ve just finished 8 cycles of VMP, and my PP’s have plateaued at 11 which I must say I am disappointed in. I had at least hoped it would get down to a single figure. There has been no mention of continuing treatment.
I understood the maximum Velcade one can have is 12 cycles (NICE protocols ) Also that maintenance is not approved in the UK…[Read more]

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 m…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Hi,

I am on my 8th & last cycle of velcade, melphalan, & prednisolone and I too have plateaued at 11, from 54. I am rather disappointed it hasn’t, at least, reached single figures. I haven’t found the treatment too bad after the first two cycles.

I intend to take Circumin, with agreement from my consultant, in the hope it will keep things in…[Read more]

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…[Read more]

Hi Paula

I was very interested in your post. I have been reading up as much as I can about curcumin and myeloma, having spoken to my consultant about my starting it when I’ve finished my next and final cycle.

I would appreciate info on what is the best dose. I have seen a post on m beacon that “doctor best” make is a good one. I don’t know if…[Read more]

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…[Read more]

Hi Denise

It’s normal to have fatigue whilst on chemo. It’s one of the common side effects of most treatments, depending to a degree, on which you are on.

Just listen to your body and rest if you feel so, but also try to take a little light exercise such as walking when you feel up to it.

Best of luck

susie

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 d…[Read more]

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…[Read more]

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 you…[Read more]

Hi Michael

I”m doing well thank you. Things improved at the hospital and I now see my own consultant who is absolutely lovely. I have 2 more cycles to have of the MVP and apart from the first week of each cycle, when I have to take the tablets, I don’t feel too bad at all from Velcade. My paraproteins are down to 12 from 54 and light chains are…[Read more]