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

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]

Regards Dean

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

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

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]

Just had our meeting with the team regarding my transplant. So much to take in that I got to the point where I didn’t want to take anymore ino in.. Due to a shortage of beds I was warned that when I have my chemo I will be in a open ward.. Not happy about dealing with bad sickness etc, would rather my own room for that, but it is what…[Read more]

A very good point. I got your impression when I asked my Doctor “can I have my stemcell transplant later”..? Probably because I’m on the young side, the doctor looked at me in shock horror that I can even think like this & ask.. Anyway I’m going ahead with it but don’t hurt to ask but that’s when I realised,   I’m restricted…[Read more]

Yes all the info was a great help. Like you I don’t like all this waiting around. All the best Dean

I hope you don’t mind me joining in this conversation. Did you get your fish test done on your first bone marrow byopsie?  My hospital didn’t do it. When I asked, they have just recently done the test from my second byopsie as I finished my induction treatment last month. Now getting ready for my stemcell transplant around November…[Read more]

Like you finding it tough.. more the worry etc as I have a young family.  Hopefully the stemcell transplant does the job for a while and get to family life with my girls.. fingers crossed.  I got to a bad start with chemo but got through it. Now not had any chemo for 3 weeks on a break until end of October then stemcel. Abit scared goung t…[Read more]

I know it’s hard, I’m still trying to get my head around it all still when I was diagnosed back in April. We can’t change it now, we have to deal with it unfortunately.. I’m 42 and half maltese. My mum who is also called Carmen lives in mgar… have they given you options to where you can have your Sct??? I did hear that Malta has a…[Read more]

My harvest is about 2 weeks after you but not been given a date yet for transplant. Yes it’s all so much to take in and the worry of it all etc.. either way I think we will be days or weeks us two having it done. . If you want a chat about it all etc by all means inbox me your number and we can chat to help each other. But if you don’t…[Read more]

I was just going to put a message out asking the same thing. Like you, we were on the same treatment & I’m having my stemcell at kings very close to your dates. I’m probably going in just after you by days.. It’s alot to take in leading up to the build up etc..

Regards Dean

A great message it’s really helped. I’ve defenitly had a delayed reaction from my diagnosis. From today I’m starting a fresh. Glad every thing has gone so well your end keep it up also.

Im 41 & up to mid April I was working 6 days a week living life with my lovely wife & 2 daughters. Over the last 3 years I was going to my GP  regarding heat pulpertations which I felt were getting worse but was always told it was stress of working. After a another visit to my GP i had a blood test &…[Read more]