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Thanks to all those who have posted and replied on this newcomers forum , its been very helpful reading and I’m new to forums !
I’m a 58 male in good health who suffered a pathological bone fracture and was just diagnosed with MM, ISS Stage 1. Being treated with Radio and Chemo (RVD). Interested to hear from anyone who is or has been at this starting point..
Hi Rosary
Sorry to hear that you hav ejust been diagnosed with myeloma, but welcome to the club which no one wants to belong to.
I had a similar starting point to you, ie male aged 59, radiotherapy and chemo – that was six years ago in 2013.
There is plenty of advice and help out there, particularly from Myeloma UK. I would also recommend going to one of the patient Infodays and a local support group if there is one in your area.
My experience so far probably best summed up by `it’s a marathon not a sprint’.
Good luck on your myeloma journey. hope this helps.
David
Hello Rosary just to let you know that I was where you are now just about a year ago and it is quite overwhelming at first. Slowly things fall into place and treatment starts and seems to go on and on! It’s a long road and I think at times a lonely one as the induction therapy is largely tablets and popping in weekly to the Day Unit for Velcade injection. I have yet to meet another myeloma patient on my travels. I have found the information on this site to be most valuable and informative. As everyone says it seems to be very individual disease. After 6 months induction which resulted in a very good response I had a stem cell transplant in February and am at last beginning to feel stronger. I had a collapsed vertebrae and small lesions on my sternum and clavicle. I was told last week that the lesions have healed and new bone has formed in my spine which will strengthen the damaged bone. It is a long haul but as I have read on here many times it’s all doable! Very good luck to you. Keep on keeping on! Sue
T
Thank you both for you replies which are much appreciated
Sue – was the 6 months what you expected at the outset and if not too intrusive did you start out at stage ISS stage 1 and were you on Lenalidomide as one of the chemo drugs. I have a collapsed vertebrae as well and interested if you had any specific treatment for that. Thank you so much for the help, very much appreciated and as you say overwhelming initially but now getting on top of some of these tail which is helpful
Hello Rosary
When I was first diagnosed it was thought that I had a solitary plasmacytoma that had caused the vertebrae to collapse and would require some radiotherapy only and then monitoring after that. A PET scan showed up two very small lesions which then altered my treatment plan completely. I was on VTD and was told that would be for six months and then referral for stem cell transplant if I wished to go that route. I also had monthly Zometa infusion which I think has really helped heal and prevent further bone damage. Have they mentioned this for you? I must admit I never asked about the stage I was at! Think I was strangely relieved to get an answer for the horrible pain in my back and ribs even though it came as a dreadful shock to be diagnosed with MM. I hope your back is not too painful. If I remember the pain subsided pretty quickly once treatment started. I wish you the best of luck going forward. Sue
Yes I have been given my first infusion of Zometa. My back Bain is mild as my MM diagnosis was really from fracturing my shoulder where there is a significant lesion being treated with radiotherapy with other mm lesions on my clavicle and spine that are small and not being specifically treated.
Did you consider any alternatives to stem cell treatment and has how has that gone generally against expectations – I’m sensing that is the hard yards part of the treatment.
Do they give you an opening paraproteinn measurement ?
Thanks again for all the responses Sue
Hello again! Ouch a fractured shoulder sounds extremely painful. Glad that you have started Zometa. I was at the RNOH last week and the consultant there was telling me how important it is. He said with an ageing population everyone would benefit from it!
You’re right that the SCT was very daunting and I certainly wondered if I really wanted to do it or could it be postponed. I had read that there were trials in the very hospital UCH where I would be having the transplant that was looking at putting newly diagnosed MM patients on maintenance treatment at the end of induction and keeping SCT in reserve so to speak. I was told that the advice atm is still to proceed straight on to the transplant to consolidate the treatment. So I did! I was in hospital for three weeks and it was hard going at times but luckily I didn’t pick up any infections. I have been home now since 13 March and am very slowly getting back to some kind of new normal I suppose!
You have loads of tests prior to the transplant process so that they know exactly what your levels are etc and they test your heart and kidney function to make sure you will be ok to go ahead!
Good luck with the treatment for now. Best taken day by day and week by week and cross the bridges as they come! Sue
M
Hi Rosary and Sue
Sorry you are both on this forum.
As I said before I was diagnosed with smouldering myeloma in Aug.2018. I was on a randomised trial, I was chosen for watch and wait. In May at my check-up, my consultant found my anaemia levels were low, so I was put on 4 days of steroids and a blood transfusion ready to start treatment.
I am being treated at Kent and Canterbury hospital , I am the last person in the country to go on the Cardamon trial from UCL.
I have just finished my first cycle of treatment, Carfilzomib/Cyclophosphamide/Dexamethason.
Susan, it is the randomised trial, if the induction treatment for 4 months goes well, I will go upto London to have my stem cells frozen. Then the randomised trial begins, either my stem cells keep frozen until I relapse, I will then have a further 4 months of treatment, or the SCT as the gold standard for young and fit people. I will then have 18 months of maintenance treatment.
Rosary, if you can get on a trial, please do, as you’re so well looked after and anything is picked up very quickly.
I am very lucky compared to some on this forum as my consultant,trial team and the nurses on the chemo ward are all lovely.
I thank my fantastic GP for picking Myeloma up as so many GPs miss it.i had very high blood pressure, my GP ordered routine blood tests and found smouldering myeloma.
I have found the info on this forum superb and a great help to me. I hope this helps as I am just starting this journey too.
Sorry, it is so long.
Stay positive and good luck.
Regards
Bren
Thanks Bren for a very interesting post , this question of whether to go straight into SCT or wait and test remission is something I’m intrigued by , need to get to that stage after 4 months induction. The BBB were carrying a story about C-ART this morning – have you looked at these trials ?
Hi Rosary,
I think C-ART is the way, but at the moment it is for people who match certain criteria.
I found myeloma clinical trials u.k very helpful and I phoned the helpline about the drugs on my trial, while I was making my decision.
I also look at Beacon USA , as lots of info about new drugs, what is happening in the USA, Germany, and China, because they way ahead of the U.K unless you are on a trial.
Sorry, if I sound like a geek, but I like to look at different scources.
Hope it helps in your decision.
Positive thoughts
Bren
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