Hi jean

Ask for the reports on Skelton ex ray and MRI scan you are entitled to both ,if you find them difficult to understand ask them to explain them if you have no response take them to your doctor or find some one who can break down the medical jargon,

Has he had any ex rays done from time he started myeloma to now ???
They do not…[Read more]

Hello Jean

I know it's hard when your loved one has to start treatment. My hubby had no treatment for 6 1/2 years. He then had pain in his side which turned out to be small lesion on ribs. Radio therapist not concerned about it and did no treatment. Then some months after the consultant said it was time to start treatment. I know it is scary…[Read more]

Aw Tom wondered why you were so quiet on Face book :-S . I do hope you are back to your normal self soon. Think of your poor club – like Franks local – there profits have dropped dramatically 😀 Joking Tom!!! Get well soon

Love Jean x

Eve

Glad to hear that Slim has no more lesions. You just seem to be banging your head against a brick wall. Can Ellen or Maggie give you any advice. Franks consultant said that the PET scan was needed to detect how active if at all the Myeloma is. There is no proteins in the blood and as they had been dropping for some months before treatment…[Read more]

Hi Jean
It's good to know he's doing ok, I still can't take wine or curry, my sense of taste is quite weird still, but it means I'm still very thin! Silver lining:-) actually it more likely means I drank too much before! As for the bmb… Results next week, but I'm fine really, I'm hoping I have a slow return to more treatment and fit in a few…[Read more]

Hi Jacquie

No – no more chemo. His PPs were 1 when transplant happened. But i know others have had much higher PP when transplant took place. He has been home now over a week and every day there is a slight improvement. No good me telling you not to worry as you will, just as I did. What is the delay? Frank goes to Belfast City Hospital in…[Read more]

Hi Helen as the boys say he must be feeling better as he is complaining 😀 appetite is improving every day. Still not eating a lot but getting there. He had a beer and a whiskey tonight – one thing about Frank – he gets his priorities right. His daily exercise is climbing the stairs a few times a day. When he first came out he couldn't manage…[Read more]

Hi Jacquie
I finished my chemo on the 6th June and was booked for harvest on the 18-19th July. I waited from the 20th July when harvest completed to 15th August for HDT and SCT . Our hospital doesn't book HDT until successful harvest is completed so it is first available space after that….. About 4 weeks in all as they like you to bet fit as…[Read more]

Hi David
Re bulbs, did you tell her what it was supposed to say? Or is that still a romantic secret?

How is Frank today Jean?
Love Helen

Hello Jacquie

Frank was harvested in December and transplanted end of February. I was also worried I case he relapsed- proteins going up but consultant did not seem to concerned. Maybe someone else on forum can give you more insight into it. I hope Geoff has an easy time with it

Best wishes
Jean

That's right Helen 6 months for USA

Jean x

Hi David
I have an old style passport which runs out on 29th April. We went to lanzarote 2 weeks ago. It was fine for Europe but lots of officials pointed its date to me! Had I been going to America I would have needed 6 months on it they said.
Hope that helps
Love Helen

Hi Jean

I did try again to day,but I was met with same explanation which is PET SCAN WILL NOT TELL YOU WHAT IS GOING ON IN THE BONES. I said I know that but it will show if it in the soft tissue,fell on deaf ears.we know its 10 percent in bones,no extra damage shows on MRI or exrays.. He has another BMB on the 7 of May blood taken for…[Read more]

Hi jean

Looks if your post,slipped down,and you had no reply.

I am sorry Mike has to start treatment after 5years. I take it he has come out of remission !?!!

Velcade did work for Slim,and managed to get to SCT,but he only got 6months before it came back. Asa drug Slim did not have many side effects,in some places they do it subcutaneous…[Read more]

Hi Eve

Don't understand why hospitals all differ. Franks consultant is organising a PET scan for him. As she said no myeloma showed up in blood and as his PPs were falling before treatment started it is the ONLY way to find if the myeloma is active and to what extent. Eve you fight Slims corner with all your strength – keep nagging until they…[Read more]

Hi Dai

Just a quick note,I think Janet would benefit from this site,cannot get Slim on it,says its my thing, but as time goes on he wants to know more and has started to watch the info videos on here.

I have been trying to get the Myeloma team to consider a PET scan for Slim,but falls on deaf ears,say they do not do PET scans for…[Read more]

Hi Dai
Having only recently ( yesterday?) thought you seemed to be doing rather better than for a while I am finding it really disappointing to read of your recent encounters and frustrations, I can totally see your point and don't understand the reasoning behind it,do they think gcsf might exacerbate myeloma cells ? Other people seem to get it…[Read more]

Hello Jo
Like all the others I wondered where you were, especially when the hair dye question was raised a few weeks ago! You wre instrumental in my taking the plunge there again.
I'm thinking of calling a register soon, just to keep tabs on everyone!:-) or maybe one of those map things that Harry potter had would be good.
I'm sorry to hear…[Read more]

Hi Dai

I have just looked up the other trial mentioned on this sites myeloma home page, where it mentions the new ENDEAVOUR trial which appears to be the same as the upcoming MUK five trial offering Carflizomb + Dex v Velcade + Dex.

You would need to read through all of the eligibility criteria for the Endeavour trial because it appears to…[Read more]