[HelenParticipant]

Hi Mavis glad to see you still in remission, you have to make the most of it. Get out as much as you can on that mobility scooter.
Re quality of life… Yes it is important and I understand what Dai felt, but even though I only got 14 months from mine, and had a terrible recovery, I’d still do sct again if it could keep me here longer. We will never know how quickly I would have relapsed if I hadn’t had it. It may well have given me extra time. I remain optimistic and hope that I will be the one who gets the long remission from ‘the next treatment’ and the next etc. I think that when the disease takes over and the options run out then quality of life takes a different perspective, but until then I just take what is on offer, cross my fingers and pray it works!
So far my light chains have dropped by 50% already so maybe Pomalidomide is the one! I will keep you posted.

Hi Maureen
Ian will have had his results by now, I hope they give no cause for alarm.
An exciting film career would be good but I’m not going to change my lifestyle just yet! The wedding is New Years Eve. We’ve not heard anymore from the disgruntled ones yet!
Our survey on the new house isn’t good so this could be a long drawn out affair! Just have to wait and see. I’m trying not to look at others yet!
Love Helen

[bandityogaParticipant]

Helen

Ian had good results, FLC have come down to 154. We are so relieved and really pleased. Had a talk with consultant regarding SCT. She wasn’t sure whether it was better to stay on revlimid or go for SCT, we shall see if Ian’s FLC come down further then he would definitley harvest cells.

Hope the plans for the wedding are going well. Are you enjoying retirement. I don’t know how I fitted work in. I do
pilates, a soft furnishing class, swimming and ofcourse lunch with friends.

Happy house hunting.

Maureen x

[andygParticipant]

Evening Helen.

It’s my Dex night and my forum catch up.

Glad to read you’ve had a good response to Pomalidomide. Hopefully the Cancer Drug Fund won’t remove it from its list of available drugs.

You still have some control in your course of treatment Helen which is good. I don’t know what I’d do even though I have thought a lot about what I’d say if a SCT was available to me. If that situation ever present its self then I think I will be in for some headaches!

Re wedding invites Steph and I had the same dilemma when we got married and decided it was our day and invited only a few children of close relatives. If others were put out be that that was their problem.

The holiday diary is still looking bare guess that needs sorting.

Had an appointment with my spinal surgeon and he said there’s no major change shown on my latest MRI so I don’t see him for another six months. Off to see my dental consultant Tuesday to see how my ONJ is coming along. It’s all go!

Hi Mavis.

A motability scooter wow I got my motability car at the end of August so we are both mobile. When I’m out and about and I see people on their scooters I wonder if I will need one in the future. I don’t know who’d be in more danger me or pedestrians.

Hope your remission continues for a long time to come.

Hi Maureen.

I don’t know how low Ian’s FLC need to go till he’s classed as being in remission. That is my next mission to find out. When he gets there they can harvest his stem cells and then you’ll be in a position to decide if and when you go for SCT.

I’m with you on the retirement situation. I can’t find enough time to do the little I do now so how I managed to fit work is beyond me! lol

Every day is a gift.

Get out and enjoy them.

Love Andy xx

[Author]

Posts