[deanParticipant]

Hi George

Great news your doing very well.

I start my treatment on Monday. Getting abit nervous, but definitely ready as I’ve had time to get prepared. How did you find Dara? Apparently I have to wait around 6 hours after to make sure I’m feeling fine.
So hopefully all goes to plan.

Keep us updated, all the best

Regards Dean

Dean

[deanParticipant]

Hi George

Glad that you have got to such a good start. Keep it up. I think I’m starting DVD very soon.

Keep a open mind with the fish results.
You have responded to treatment , so a very good start.

Keep us updated 👍
Regards Dean

[deanParticipant]

Hi George

Good luck with your first set of results. Keep us updated.

Yes I’m dealing with my first relapse. Just waiting regarding starting new treatment. If all goes to plan then will have a second Sct. I didn’t have a fish test when I was first diagnosed, no maintenance. This time they want a fish test and I believe they offer maintenance. So just keeping my options open and will go with it.

All the best & keep us updated

[deanParticipant]

Hi George

Glad to hear your treatment has gone well.

I also was 41 when diagnosed. My kidneys function was very high from a blood test.

Like you my kids were very young. Just recently celebrated my daughters 18th birthday. Your message reminded me of how I felt back then. Things will get easier.

Regarding the Sct, based on my experience it wasn’t that bad and didn’t have no infections. I did worry before having it but i was fine. Personally I found the front line treatment harder. If you need to contact me directly for a chat at anytime just ask. Good luck

[deanParticipant]

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

[deanParticipant]

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 November.  I read up on the SCT & it so stressed me out. If your going for the SCT I personally found it ok. The worry was the worst part but nothing didn’t happen except for a rash which fortunately didn’t itch. Everyone is different but please keep a open mind, as I have felt worse having the flu then doing a SCT.  So if you read any bad story’s on SCT keep a open mind… I’m now in the process of finding out if I will be doing a Allo transplant with in the 6 months, not sure yet what is happening but we all have choices regarding treatment for Myeloma which is a poisitive thing.

Regarding work, just do what you feel you can do.. your body will tell you.

All the best and good luck

Dean

[deanParticipant]

Thanks for your message Cygnet

Regards Dean

[deanParticipant]

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

[deanParticipant]

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 presure on…  Thanks Dean

[deanParticipant]

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. Will keep at them. Aparenty I’ve been told there new way of thinking is that your more likely to catch a infection from your own body instead of someone else.. I was told I would only get a room if the sickness is to bad ( yes I have to share a toilet ). if it gets to bad then they will give a side room. Personally I think it’s due to a bed problem but they have told me the USA do it this way now and it’s a future thing for the Nhs. As you know more mental worry which you don’t need when going  through a Sct.. .

Thank you again

[deanParticipant]

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 complaint to the Trust saying how bad this is that a cancer patients are being  delayed.  I just hope I get a date for this week as there is a high chance I could be in over xmas now.. I’m probably not the only one out there but I think it’s really bad.. Has any one had there Sct in a open ward? Sorry to moan.

Dean

[deanParticipant]

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 sure what way yet.. Yes more drugs but if it helps us worth a shot. Good luck with your treatment etc

Dean

[deanParticipant]

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 induction treatment so it does happen out there we just don’t hear it much. Takcare

[deanParticipant]

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 meet my Doctors and I always get different views on how to deal with MM, Im pleased I can then ask inportant questions and pin them down more on answers. Specially when they talk about Allo. They still can’t decide when , I have a split decision with the team of Doctor’s .  Half say go early with Allo other half go later.. So its a decision I have to make alone.. Now I’m thinking later and just get my head around this SCT unless the team change there mind and say early .. Trust us to have a rare disease . Will drop a message in to let you know  once I’m home and hopfuly feeling better .  Enjoy xmas with your daughter.  Dean

[deanParticipant]

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 approach sounds good, it has to be done.. All this hanging around for a bed to be free is not helping me..All the best and thanks

Regards Dean

[Author]

Posts