[tomParticipant]

Hi Vicki and Colin

Well am sorry its a none starter again 🙁 I do feel for you both and wish I could get hold of some one and give them a good shake for them to get a move on.

I like you two have sat back and let it all take its course but it has worked for me so far BUT I would be up in arms if I was same as Colin camping out in the waiting room would be me and Mine.

Good Luck for Thursday 😎

Love Tom "Onwards and Upwards" xxxxx

[JacquieParticipant]

sorry to hear things havent been going very well with Colins STC hope everything works out x

[CatlynParticipant]

Hi Vicki and Colin
Just got home and read your news and I am so gutted for you both.Glad you pre-booked an appointment with your consultant for THursday. At least you know that it wont be so long before you can talk to someone and hopefully get Plan C. You must tell that man of yours to stop being so stubborn and give out those cells. They are returned you know!!!!
You got me thinking about what we had been told and I found a Cyclophosphamide priming sheet they had sent from Southampton for next week and it states we would get 7 – 10 days GCSF injections.
I know you must both feel incredibly frustrated to say the least and you are a worrier like me Vicki but like Jean said write down everything you want to ask on Thursday and hopefully they will come up with a good productive plan C.
Will be thinking of you both. Love from Lyn xx

[AliParticipant]

Hey Vicki and Colin

Ditto what everyone else has said. Good luck for thursday and I hope you get some answers.

Love Ali xx

Ps look at your messages on your profile

[VickiParticipant]

Hi all,

Ali, I have posted you a reply to your messages, thanks 🙂

It has been a rubbish day and we have both felt quite fed up. It is absolutely soul destroying when they tell you the magic number has not been reached. It really is a case of so near yet so far. It is a real shame that the prelixafor is not available as a matter of course. Part of us thinks it's not the medical teams fault, or the NHS, they only have so much money to spend. However on the other hand this is about colins treatment!

The myeloma uk team have been great over the last couple of days and they have offered to help us/the medical team put together the business case to try to get the prelixafor injections funded. We don't want to rock the boat but this is very critical to us, like many others where the priorities don't fit!

All of your encouragement,support and words of encouragement are very much appreciated 😉

Fingers crossed for Thursday

Vicki and colin x

[AliParticipant]

Hi you two

Right, good luck for today with the Consultant.

Questions at the ready?

I really do hope you get some answers and find out what Plan C is.

Im guessing that your consultant is frustrated he cant do his job and give what his pateint needs purely due to monetry restraints. The main thing though is Colin gets the treatment he deserves and I will be rooting for you.

Please let us know….

Love Ali xx

[VickiParticipant]

Hi all,

Here is plan c then! Colin and I discussed our questions beforehand and he said I excelled myself as I had a million and 1 extra ones just as our consultant answered the planned ones! I am sure it was stress :-).

Anyway the plan is they have already started the application for prelixafor and apparently they are hopeful because there is a new commissioning regime in the nhs where you can buy services and this booster injection is on the list, so here is hoping. She did say that they are 80 percent effective so there is still am chance they won't work…..:-(,'mainly because some peoples bone marrow is so battered they won't respond. We should know something in next couple of weeks but 24/9/12 for SCT is now off :-(. If the booster injections do fail then Colin won't be able to have an SCT. If that happens then apparently the next plan would be to give him a lower dose of melphalan that doesn't wipe out the bone marrow altogether and then consider maintenance treatment (not sure if that would be randomised). At first we thought this was bad news but she did say that there are now some schools of thought that don't necessarily think sct is the way to go now?. In colins case she did say that they would like to do it if they can. All in all I guess it has been an ok day, the waiting game again. I do hope we get them though or there might be a fight this time. Even the consultant will be fed up!

Will keep you posted…..this is worse than Dallas! :-). Didn't see it but missed reviews I hear LOL. We are trying to be positive!

Vicki and Colin x

[tomParticipant]

Hi Vicki and Colin

Am pleased for you both that it was An "OK" Day 😀 I bet you did have those extra Q's to throw at them and well done yopu for doing so 😎
Fingers and anything else that I can cross will be crossed.

Love
Tom "Onwards and Upwards" xx

[andygParticipant]

Hi Vicki & Colin.
I really hope you get the prelixalor funded and it does the job. I've been told my bone marrow is not up to producing enough stem cells for a sct due to the battering it has taken through all the different chemo drugs I've tried. If I remember right Colin has only had one type of chemo so hopefully his bone marrow won't be too damaged. Fingers crossed.
We're now in the lakes 🙂 and typically it's raining 🙁 but tomorrow's another day and anyway it's dry in the pubs 😉

Wishing and hoping for the best for you both.
Andy xx

[AliParticipant]

HI Vicki and Colin

Good for you with your questions!

Have you seen BikerChris post? hes just had funding granted for Plerixafor – good news:-)

Try not to think about it not working (just goes to show there is a plan d,e,f etc) you are going to get there!

Ps I am one of the ones that watched Dallas – loved it, can remember it from before, me and Mum used to watch it before I left home (though she said today she didnt like much!).

Have a lovely weekend and try to chill:-)

Love Ali xx

[VickiParticipant]

Hi Ali, Tom and Andy

Thanks all for your support. Ali, we did see biker chris's post and we are so so pleased for him, and hopefully us. My pessimistic side comes out a bit always but I have been positive up to now :-). I was glad I asked lots of questions despite promising to take it slow (woman's prerogative) and it has helped us. Andy you are right Colin has only had one type of chemo so we hope he's not taken too much of a hit, but he always seemed hit hard by the revlimid, so not sure if that had any impact as well. Still here's hoping!

Keep everything crossed Tom, and Andy you enjoy the lakes, inside pub or outside. There must be sun now. It's glorious down here with us southern sorties 🙂

Vicki and Colin x

[foxy555Participant]

Hi Vicki and Colin

Just caught up with your thread, I am so sorry to hear your news. You really have been through the mill in the last few weeks, but you still sound strong and thankfully there is the prelixafor, I do hope you get the funding. How long will it take???

I honestly thought that Colin would have been well into treatment by now and on the road to recovery. As we have said before, no symptons or treatment of Myeloma are the same. Sorry cannot offer any advice, not been through it yet!!!!!

Here is to Plan C – Vicki!!!

Take care both of you

Love

Ann and Pete

xx

[andygParticipant]

Hi Vicki & Colin.
Another day draws to a close in the lakes and we've had no real rain! We. Actually saw the sun for a few minutes today 😉 Anyway we've had a good day. Did a little walking and a bit of sitting on our way round tarn hows and then had a beer and a bite at coniston. I'm now tired out. Hopefully the sun will shine a bit longer tomorrow.
Glad you got all your questions of your chest you must feel better now you've asked them fingers crossed they come up with the right answers for Colin.

All the best
Andy

[tomParticipant]

Hi Vicki and Colin

I did as you asked and crossed everything 😀 my legs were crossed that much they had a struggle to get me home from the Club last Nite:-S

Andy am pleased your having a great time sham about the rain though? you should have come to "Sunny" Scunny as its been pretty good here 😎 nearly burn me bald head Lol

You all have a great week end am told the weather is gonna be great 😎 Lookin good at 8.45 in "Sunny Scunny" 😎

Tom "Onwards and Upwards"

[andygParticipant]

Hi Vicki, Colin & Tom.
Weather update – woke up this morning to thick fog! I think the sun is avoiding us.
Hope you all have a sunny weekend whilst we hide out in the pubs 😉
All the best
Andy xx

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