Hi Phil,

Fantastic news – well done! I am coming up for 1 year post-SCT, so to read stories like yours 6 years out is great. Wishing you all the very best for the future.

Greg

Hi Pepz,
<p style=”text-align: left;”>Very sorry to read about your Dad’s diagnosis and I wish you and all your family the very best at this difficult time. I think “support” means different things to different people but given it is all very new for you, a good place to start might be to read some myeloma brochures so that everyone has chance to…[Read more]

Hi Richard,

Thanks very much for doing this, let’s hope it will be accepted and set up shortly. I think it would be a good addition to the Myeloma UK Forum as whilst I still consider myself to be primarily a MM patient, I also consider myself a BMT patient and it would be good to share experiences, ask questions on both in a connected way. For…[Read more]

Hi Richard,

I think this would be a great idea. I had a BMT in February this year. I have signed up to the BMT forum on the Macmillan website and in six months have come across no-one who has done the procedure after being diagnosed with MM. So it would be great to connect with people in exactly the same boat as MM has its own challenges and…[Read more]

Hi Chris,

I did the VCD regime for 6 cycles last year and I must say I didn’t experience much if any side effects at all. I really hope you experience the same.

Merry Christmas and happy new year to you as well.

Greg

Hi Valerie,

Many thanks for sharing your amazing story. As someone who was diagnosed with myeloma at age 36, it gives me so much hope for the future. Merry Christmas and a happy new year to you as well.

Greg

I completely agree that it is extortionate. Although the hospital in Bristol is right in the city centre and all other car parks would be even more expensive, so for me it is the best of a bad job. I think there are some organisations that help with financial costs of things like car parking and I have met with some fellow patients who get paid…[Read more]

Hi Susie,

I definitely empathise with you. In Bristol the minimum charge is 3.40 and no preference given to anyone. It can become very costly!

Bristol does do a weekly ticket which helps save money if you have more than one  visit a week – does your hospital do anything like that?

Greg

Hi Neil,

MM can affect people in a very individual way but the type of things I would be asking are:

– how many cycles of VCD will I have

– what is the barometer of success of the treatment

– what are the next steps after VCD – watch and wait, maintenance, SCT

– administration things like who should I contact if problems, what side effects…[Read more]

Hi Neil,

Thanks for posting. Hopefully you will find support on here from loads of people who are in a similar position. I had a really rough time with panic and anxiety attacks. One thing that really helped me was having regular sessions with a psychologist. They really helped me understand how my brain was working and how to deal with the…[Read more]

Hi Dean,

No problem – greg_777@Hotmail.co.uk

Cheers

Greg

Hi Dean,

I had an autologous SCT in October 2015, followed by a reduced intensity allogeneic SCT in February 2016. Like you, I was told it was better to do the allo-SCT as early as possible. This was on the basis that you are younger and your donor is younger, and MM has had less time to do its magic tricks, which was one of the reasons that I…[Read more]

Hi Dean,

Sorry for butting in, but I figured you might appreciate as much insight as possible. I have had two transplants and melphalan made me as sick as a dog both times – it didn’t last long though – only about 24-48 hours if I recall correctly. The other parts of the conditioning just made me really sleepy which was actually quite helpful…[Read more]