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…[Read more]

Hi. I had my CT and skeletal survey and apart from a few very minor lesions he said nothing to worry about. So its only the Plasmacytoma to worry about. My consultant showed me the scan, the tumour is really big, no wonder I’ve had pain. I start treatment next week on the Myeloma 11 trial, they have also offered the TEAM trial that runs along side…[Read more]

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.…[Read more]

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…[Read more]

Thanks so much for your replies. It really helps to know there are people out there who know how a person feels in these circumstances.
My consultant has just phoned me. Apparently they are more concerned about the tumour on my sacral spine. He said it is rather large, the size of a tangerine, and it was missed by the physio team that took the…[Read more]

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.…[Read more]

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…[Read more]

I’ve had the BMB and it wasn’t too bad this time. With the gas and air that is. I go back next week for the final diagnosis.
What I want to ask is, has anyone been treated at Wycombe Hospital or at the cancer centre at Stoke Mandeville Hospital ?

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]