SCT waiting for pet result

Hi, yes your disease is now refractory, but that does not mean the big guns cannot still get it, the are still options though, if it is still active, CAR-T cell therapy being one and other trials, if you are eligible.

As for scanxiety that is hard as you battle with the what if's so try to keep busy, do things that distract or occupy you and if you have any good friends that would be willing to go with you see if they are free.

As Mike has more experience of this than me I am sure he will be along with words of wisdom soon

john

Hi Gwen, my advise as always is that you have to see what your team say on the day and find out what the plan is regardless of good or bad news.

I also had Lymphoma and there are lots of tools in the Haematologists tool boxes including SCT. You can't actually control what will be said on Friday so you go in with a clear head, look to have someone with you as you may get lots of information and make sure you totally understand what your team is saying and if they give you options get as much info as possible.

Highlander ((hugs))

Dear Mike  Thank you so much for replying, I hardly slept last night, so worried. I have been looking at Clinical Trials this morning so that If it's bad news about SCT I will be able to ask about alternatives  Will be in touch  love gwen x

Dear John  Many thanks for your reply. I have been looking at the clinical trials this morning and it appears Christies are not yet recruiting for the CAR-T ,Hardly slept last night, this waiting is horrible. Will be in touch on Friday  Gwen xx

Thinking of you, Gwen, you couldn’t be in a finer hospital for help, if there is anything to find, they will do so!

hugs xxx

Hi Gwen, just to advise CAR-T cell therapy has been approved or will be very soon see this article on the lymphoma action site today, so would expect The Christie to be on the list 

https://lymphoma-action.org.uk/car-t-cell-therapy-be-available-nhs-people-lymphoma

john

local news says 5 centres across the country will offer it and the Freeman at Newcastle is one 

Dear Mike, John & moomy  I went for my PET results yesterday and I saw Dr Gibb who I like very much. He said the scan was good but the cancer thing is still there although shrunken so it is so tiny wouldn't be picked upon a normal CT scan. They are puzzled by what  exactly it is! However after discussion with the Transplant man Dr Bloor, they have decided that I go ahead on Monday with the SCT mobilisation, CYCLYPHOSPHAMIDE and then the injections before the "harvesting from 15th. So I am happy about that. I did ask about the CAR T programme , Christies are hoping to begin that in November. Today I am going to prepare my list of things to do . So a new phase for me, I have spoken to one of the Nurses on the team who has said she will show me round the Wards on monday . I had a fairly good sleep last night.What kind of reaction do you all think I might get from the cyclophosphamide, I an thinking possibly nausea AGAIN !  Please keep the info coming , it's so helpful . Many many thanks  Gwen x

Well Gwen this is truly great news and you can now think longer than a few days :) 

I never had Cyclophosphamide so lets look for some of the others to come along with first hand experiences.... but remember your team have lots of tools in the box to cover most issues.

A trip round the unit is a great idea as you can see the practicalities and ask questions and if posable see if you can talk with someone in the same position as you.

On the way our for cake with one of the granddaughters ((hugs))

Hi Gwen,

this brings back memories for me! 

Dr Gibb is great, so knowledgable! And Dr Bloor too is great, rather serious on first meeting but he and daughter really hit it off. John who is the Transplant Co-ordinator nurse, is great too. 

Youll like the ward, each room is well appointed, they take incredible care in preventing infections, there is a great team of staff, plus if you have special dietary likes, they have a ward kitchen and staff who will rustle up tasty snacks day and night if needed, and serve them so nicely, you’ll want to eat! 

Sending hugs xxx

Hi Gwen,

I had cyclophosphamide as part of my induction treatment. I coped with it pretty well and didn’t notice any significant side effects.

Really hoping you find the same too.

All the best,

 Greg