[JacquieParticipant]

Hello

Please can I ask those of you that have gone through SCT to tell me how long you waited from Harvest to Transplant. I am asking this as Geoff went for collection 2 weeks ago and due to have transplant June 16. He went to GRH today to have his line flushed and his consultant thinks this is too long to wait as he has not had any treatment since end of February and has told him if the MM has come back before the Transplant it wont work? She has really frightened us by telling us this on a Friday afternoon.

would be grateful for any advice 🙁

Jacquie

[jmsmythParticipant]

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

[JacquieParticipant]

Thanks Jean

Did Frank have to go back on chemo in between?

regards

Jacquie

[HelenParticipant]

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 possible and well over the gcsf.
Love Helen

[jmsmythParticipant]

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 Belfast and they only have 6 sterile units that service the whole of N Ireland for SCT and Leukaemia and lymphoma patients get priority. Have they said when Hickman line to go in. Frank was offered to go to England earlier to have the SCT but not feasible for us. Could Geoff not go to another hospital – maybe not too far from where you live?

Hope you get something sorted soon for Geoff
Take care
Love Jean x

[tomParticipant]

Hi Jacquie

Am sure they wont let you wait too long to get it done, the problem is bed space and as soon as on is free its booked for you.

Good Luck

Tom Onwards and Upwards xx

[VickiParticipant]

Hi jacqui,

No one seemed bothered at GRH about time delays….Colin had treatment til mid July I think and then didn't have transplant til November and no one mentioned time delay…..still if they think its too long couldn't you go to Bristol if they do it there?

Vicki

[JacquieParticipant]

Hi Vicki

it was just Dr Frewin told Geoff on Friday she thought we were leaving it to long to have his transplant in June! she really put the cat among the pigeons he was so emotional 🙁 I am going to call Sian Middleton Monday to see when it will be as we have enough cells. Did colin go back on any treatment after his harvest and before transplant?

regards

Jacquie

[VickiParticipant]

Hi jacqui,

No he didn't, we weren't told what his pps were before transplant, we assumed they were still zero. We saw dr Frewin before transplant too and she didn't seem worried about time delays then. I would ring Sian because she can reasure or get this moving. Dr Frewin freighted the whits out of us the way she described the transplant, although probably right, was quite graphic and nearly caused Colin to back out….that said she is very proactive so maybe if she says its too long they'll move it forward.

It is such an emotional time, even now as you'll see I took Colin to hospital today as I was so worried about his fatigue. I do feel for you both, the wait is terrible. Poor Geoff. Let is know how you get on after speaking with Sian x 🙂

Vicki and Colin xx

[andygParticipant]

Hi Vicki & Colin.
Sorry to read that Colin was back at the hospital yesterday. I do hope his fatigue is down to him doing too much too soon. I can't believe he went back to work so soon after his SCT. I can't imagine my returning to work at all at this moment. Everyone's needs and journey are different I know but I think one constant is the tiredness.
The trouble with MM is you never forget about it no matter how hard you try. I know Steph is always watching me for signs of trouble. Even a change in mood will trigger questions and a temperature check. Every cough or sneeze every unfinished meal leads to more questions. It's best to be vigilant though hopefully given time you become used to being paranoid.
Take care Vicki and keep your eyes peeled and ensure Colin get plenty of rest even if he thinks he doesn't need it.

Every day is a gift

Andy & Steph xx

[VickiParticipant]

Hi jacqui and jeff

How are things? Did you get some reassurance?

Vicki and Colin x

[JacquieParticipant]

Hi Vicki & Colin
Sian finally got back to us Friday afternoon possible transplant dated for 6th or 13th May ! She is going to confirm next week. However I go to America to visit my daughter and granddaughter on 20 May with my mum for her 80th birthday.

Geoff is happy to go ahead sooner and his brother has agreed to see him through it if I am not here 🙁 Feel I should not go away but Geoff wants me to go still and its better for him to have sooner as his nerves are terrible at the moment very emotional 🙁 Will be good if they can do it so he gets out when I get back as I would not want him at home on his own.

Will update you next week.

How is Colin now?

[VickiParticipant]

Oh jacqui, what a dilemma! But if that is what Geoff wants, go with it!

Colin was very very emotional leading up to sct….and like Geoff, although he wouldn't admit it, his nerves were bad too. He had some terrible panic attacks. He saw the clinical psychologist before he went in for sct. Colin was very anti that before but I persuaded him to give it a go and it helped a lot. Her name was Nicky……ask Sian about her. She also visited Colin a few times whilst he was in having sct. She was great. It helped us both 🙂 we are still waiting Colin to turn the corner and feel like himself….he has reduced his morphine based tablets for back pain as advised but he's got bad back now! So other tablets awaited! He is just fed up as he wants to be back to normal….we have hospital appointment Tuesday for check up! Always scared 🙂

Keep us posted….best to get it over with….come on Geoff, you can do it 🙂

Vicki nd Colin x

[JacquieParticipant]

Hi Vicky & Colin
Hope all went well today. Do you go to EJU?
We are waiting confirmation of date from Sian.
Geoff has also been seeing Nicky. he finds it really hard to accept and is very emotional all the time:( I just hope he will improve once the transplant is done.

regards

Jacquie

[VickiParticipant]

Hi jacqui,

Yes we go to EJU, and we are now moved to a Wednesday afternoon clinic. All good today and they want to see us again in two months. Colin's back is still bad so thinking what to do next, but they are referring to back specialist. :-). Glad Geoff is seeing Nicky. Colin sometimes says its like a dream (nightmare more like :-(), being in this situation….but we just plough on. Psychologically it is hard,even after sct because they are so weak and forlorn, so it's hard to buck up!. But it does come x. Tonight we went out for an early evening meal, what a luxury and so nice just to go out :-). You will get there too. We saw a former colleague of Colin's today who had leukaemia 16 years ago and is ok now….different condition but positive outlook if you can keep it going is bound to help x

Take care and keep us posted!

Vicki and Colin xx

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