Hi

I had my first SCT 2 months ago. I was expecting all these bad things to happen and fortunately it didn’t happen . I was not even Sick. Did not fancy food for a few days but got through it ok. The worry was the worst part for me.

All the best

Dean

Hi Richard

I was diagnosed at the age of 41 last April. We all know what you are experiencing. Trust me, things do get easier as time goes on. I had many bad days at the start but thanks to Rebecca and others giving me advise, in time things become more clearer.

I finished my CTD treatment back In June then had a break & had my SCT at the end of…[Read more]

Thanks for your message Cygnet

Regards Dean

Hi Valerie

Thanks for sharing your story .  I was diagnosed this year at the age of 41. Not long been back from hospital after having my SCT . .. Your story gives us all great hope…

Regards Dean

Thanks Rebecca

I called Myeloma uk regarding the above. They did tell me some hospitals are going to open wards and more in the future. Cost saving I reckon . . Anyway, it is what it is, i just have to hang in there now .  They just called me to say ” No bed”… Let’s see what happens this week . .. We are also calling them every day to keep the…[Read more]

Peony

Thanks very much. Nice to hear you say years back. I’m roughly the same age as when you were diagnosed. Hope everything worked out your end regarding gp etc .

Rebecca ,  thanks for the post wow that was a long wait. My consultants are at the hospital and don’t seemed to be concerned when I tell them it’s been 5 months of treatment now.…[Read more]

Has anyone else had this problem ?

I was due to have my SCT at King’s in London over 2 weeks ago to be told they have a big bed problem & im still waiting .  Not knowing each day is terrible . I’ve been warned this can go on for another few weeks & a high chance I will be on a ward not my own room which i also think is bad..  We have made a c…[Read more]

Hi Gary

Sorry to hear your news.. As Louis said the drugs are improving.  I was diagnosed back in April ,  should of had my Sct last week but still waiting due to No beds, what a joke. I been warned it may go for another 2 weeks still… Im down for the same trial , after SCT my doctors are running all the options past me afree transplant nit s…[Read more]

Great advise Rebecca .  Also on a positive note since being at the hospital lots, I’ve spoken to 2 patients who are 10yrs  & 13yrs since only 1 SCT others who have relapsed & are doing well down the drug line. Like what Richard said in his post. I got talking to one guy who refused a SCT & been lucky just on maintenance for 9 years since i…[Read more]

Hi Rebecca

Thanks again for the tips. I’ve told my wife to not visit and look after our daughters.. I feel a duty to protect them and only want family to see me on a good day. I’m probably thinking to much in to it again. Yes this site and the Beacon are great. I’ve learnt alot, sometimes I think do I need to get this informed, but then when I…[Read more]

Hi Richard

Thanks for your tips… it’s good to know we have other options and how well your doing. My problem is that I always try and second guess this disease and plan ahead & I no we can’t.  We just have to go with it. I will certainly feel more positive once I get this SCT done and behind me.

Stanley

Thanks for your advise..Yes your…[Read more]

Hi Rebecca

Good luck with the blood test.. it must be a nice thought to look back from where you were 3 years ago. You have done so well. It’s all that fitness you do. I have my Sct next Tuesday depending if a bed is free. You must know that feeling, I don’t mind saying I’m getting down & scared but needs to be done.  My hospital were thinking…[Read more]

Hi.

Have you called the nurses at Myeloma uk?  They are really helpful and maybe able to advise you. As you were diagnosed with myeloma years back they should be listening to you that’s really bad.. hopefully it could be something else… was it just the one SCT transplant you had years back?? I thought after 10 years there is less chance of it…[Read more]

Thank you Scott will drop you a email very soon.

Thanks again Rebecca.                             I have personally decided to go for it early ( my wife is worried & wants maybe to put on hold for later) but I feel for me & for the kids this is the best time. Doctors still haven’t decided yet to go now or later but I think evidence shows if in C…[Read more]

Hi Maureen

I defenitly agree with Rebecca on a second opinion. There has to be away for you to be able to get the next set of drugs for when your husband may need them for later. I’ve also got a Myeloma specialist as back up & he just double checks my team are making the right decisions. His miles away but worth the trip.  It makes me so angry…[Read more]

Hi Greg

Thanks to replying.

I do have a few things to ask you if possible. Is it possible to call you or email you? Not sure how we give our contact details out maybe in the inbox? If you don’t want to no worries I will understand.  Thanks Dean

Hi.

Just wondering if anyone out there has had a allogeneic transplant?  My Doctors are thinking of doing a allogeneic transplant shortly after my SCT coming up this November or waiting if i relapse. There still deciding.  I have heard it’s better to do Allogeneic transplant early when in remission but then I’ve also heard of people doing it l…[Read more]

Thanks for all the tips.. it really helps me.. regards Dean

Thanks Rebecca for all your advise sorry that I have been keeping you busy.  Yes the hospital said there is a high chance I be on a open ward for the first week until my blood levels drop so not happy about that when sick… they also do transplants now for patients who need dialysis for there kidneys. . Got the impression it’s getting common.…[Read more]