Hang in there! It feels like crap when you are diagnosed. I was the same age as you. My back collapsed 2 days before I was going to take my kids on a. Road tour of California. So I had to tell them no holiday plus I had cancer. I was in hospital for 2 weeks as I couldn’t walk with my back, morphine at night to ease the pain. I also had caught…[Read more]

Hi Sarah.

There is some great advice on here which I hope you are picking up on. MM is very scary but you can read some fantastic stories on here of people putting it behind them. The treatment can be rough and some of us get side effects (I have neuropathy in my feet which can be discomforting) but life does go on. The only reminder for me is…[Read more]

Some interesting results today from the US on ‘killer T-cells. Sounds similar to the treatment described above. All part of the immunotherapy treatment. 90% of those treated in the study (who were all at last base for treatments) went into remission so that’s encouraging. Very early days yet and no data published but good news at least. There was…[Read more]

SCT at aged 70? Fantastic news. Gives hope to us younger ones who have undergone SCT already at a younger age. There is still treatment possibilities as you get older. Good luck to you all.

Hi Millie

things do get better. I had the collapsed vertebrae that led to the diagnosis of MM and it was a shock. I had never heard of it and when I understood what I had I thought my life had ended. That was 24 July 2014 and I am still here. The treatment can be hard at times and I had the SCT this time last year which was hard as well but it’s…[Read more]

Val

take the precautions recommended but to be honest get him back to normal as soon as you can. The odd germ won’t do any harm and will help the immune system do what it’s designed to do. Also get him out for fresh air and exercise. Good for the body but also the mind. Hospital for SCT was mind numbing and I was glad to get out and do normal…[Read more]

Great news Karen. I was lucky enough to go back to work about 6 weeks post SCT and I haven’t looked back. You should find yourself getting stronger each day and enjoy this time. As one of my consultants said to me ‘it doesn’t get better than this’ so enjoy it. It’s a pain having to do Zometa every month and each quarter my anxiety levels go up…[Read more]

No harm in using a buggy David. The fact that you are out playing is great. Beats sitting in a hospital bed doesn’t it? It took me. A few months to build up to 18!hiles so take your time. Use the buggy, then after a while maybe try 6 holes walking, then 9 etc. That’s what I did. It was an objective of mine to get back out and now I’ve done it I…[Read more]

Dave. I have quite bad neuropathy in my feet caused mainly I’m told by the thalidomide. The muscle loss in my legs was due to the dex steroids. I tried pregabalin but had a major itching reaction to it so had to give that up. I have been using amitriptyline for about 2 months now. I finished chemo at the end of last year so I am further along than…[Read more]

Hi

i had thalidomide and it caused me neuropathy which I still suffer from. However, I recently completed my first 18 holes on the golf course. There are meds for neuropathy so ask your consultant. The pins and needles and numb feet are still there but manageable.

Good luck.

Hi Karen. SCT isn’t easy but hopefully in the end worth it

Good luck Brian. After all the waiting, the end result should be worth it. I was able to work after my Hickman line was in and indeed travelled abroad on business (although I was concerned I might set the metal detector off or something and have to explain what was under my shirt and tie!). I was back at work 6 weeks after transplant and my first…[Read more]

Hi All

for those going through SCT sometimes it’s better not to know! I was out after 19 days which I thought was good but well done to those out earlier. Day zero is transplant day and I was told day 10 I would be unwell. Close, it was day 9 and for the next 3 days I wanted to end it all! I honestly thought was all the effort worthwhile? Then I…[Read more]

Hear hear. Well said.

And for for those that can’t find that energy for life, don’t beat yourselves up as that won’t help. Try and find it bit by bit. I was lucky to be offered free councilling at the hospital I was at (given the fees I’m sure it wasn’t free!) and this helped a bit but I realised after 3 sessions (I was entitled to 8) that I had…[Read more]

Hi all

its hard to stay positive and focused when all we have been doing is this during the treatment. When the treatment stops and we are in remission, where do we go from there? I have wrestled with this and finally concluded this is as good as it gets so I may as well enjoy it whil it lasts and embrace life. I remember the times in hospital,…[Read more]

Hi all

my consultant briefly talked about maintenance but we quickly decided against it. I am not on any trial (I wasn’t offered it) but like others here, I wanted to get off the drugs and try and lead a normal life. I had a SCT in February and was back to work by the beginning of April mice had the odd chest infection but otherwise ok. One of…[Read more]

Hi all

I was diagnosed last year in July, had chemo from August onwards and had my transplant in Feb 2015. My focus was always on the next part of the procedure, such as the next chemo session. Once chemo was finished, the focus was on the SCT and then during this, it was all about returning to work, which I did at the beginning of April (quite…[Read more]

HMJ. Wow. How wonderful to read what you have written which brought tears to my eyes. 19 years is the longest I have ever heard anyone surviving with MM. I was diagnosed last year at the age of 47 and I have 2 kids, one 18 and one 15 and one of my objectives is to be able to walk my daughter down the isle at some point if I could get 19 years I…[Read more]

Just an update in the hope this might help others, I stopped the Pregrabalin and the itching has slowly stopped. Not completely but a lot better than it was. So I assume it was the Pregrabalin after all.