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
Hi Tina,
Colin has had his line in for a while now. It is really useful for the blood samples etc. Whilst he thought it was s bot of a nuisance to begin with, it has been very useful.
Hi Stephen, how are you getting on after your SCT. We were wondering how you were doing. Colin has had two goes at stem cell harvest and neither worked. We are waiting for plan c. We hope you are on the mend,
Vicki and Colin 🙂
Hi Dai/all,
Just got back from the hospital. His numbers had not budged from yesterday. We saw a young doctor who told us the scores this morning and was very sorry for us. He did not however want to preempt what our consultant might say. When we came home yesterday we thought this would happen today so contacted the hospital to get an appointment with the consultant this Thursday, as you say Dai, to avoid the weeks getting away from us. I know they are busy people but both times we have had no contact from the hospital and it has always been us that has instigated that contact…..which is a bit disappointing.
The young doctor we saw today again mentioned the plerixafor and we told him the funding situation. They all mention it. We contacted Ellen yesterday on this site, and she said they help to create a business case and that's my next step. Still no one has mentioned double dose gcsf injections, in fact they gave him less gcsf strength this time, along with the cyclophosphamide. Gcsf on it's own was more effective last time. You are right about getting assertive. I also read that they normally give 10 days gcsf with cyclophosphamide but we did not have that either. I know we will be more assertive Thursday because we have entirely played it their way up to now but this is causing us both stress that we don't need.
Keep your fingers crossed for us.
I hope your bug has settled down now Dai. 🙂
Vicki and Colin
Jean,Ali,Helen,Andy
Thanks for your support. I felt quite emotional and supported when I read them. Colin will read them too. He was almost tempted to post himself and thats a first.
Andy, I feel bad moaning because you seem to have had such a struggle to get your pps down and here you are taking the time to support us. I so hope your pps come down to an acceptable level so that you can have an SCT :-).
Helen, Ali, Jean, it is a blow, we are going down again today but we don't have hope. Colin has had very little pain, which at first we put down to the v strong painkillers he is on for his back anyway. Infect we think it's just not working. Although the doctor said it can go from 1 to 17 overnight, the way colins seems to move is slow. It does seems that funding is an issue here, and we hope that we can be allowed to apply again and won't just give up on the SCT idea. Ellen the nurse said that they would help put a business case together for us/the hospital. The one thing I don't understand is that in the sct book it says that with cyclophosmahide priming they usually give 10 days gcsf injections (we have 6 days). Also no one has mentioned double doses etc. Sometimes the effort to get these cells out seems to be lacking, or maybe that's just me being fed up.
Where we go from here I don't know, but if we could have some minor miracle today that would be great. What worries me is that Colin is getting more disheartened and I am running out of things to say:-(. He has such a good response to treatment and we feel like we are banging our heads against a brick wall. THERE HAS GOT TO BE A PLAN C!
sorry for rambling…..will keep you posted. I hope these booster injections become the norm so that others don't have to go through this
Viicki and Colin x
Congratulations Wendy,
Good on you! And your cells!
If only we could get colins out to start on this trail 🙂
Vicki and Colin x
Hi Jean
Thanks so much. I hope your husbands treatment is going well (Frank isn't it?). I have also been following your posts too. We are expecting a complete failure tomorrow and so phoned to get an appointment with the consultant on Thursday this week so that we can get a good understanding of where we go from here. We were so fed up,we,decided to go out for a meal this evening, so at least we felt like we were enjoying ourselves! We weren't out long but it was a change.
It's just so destroying when you drive all that way for a huge disappointment, that to me feels like a stake in my heart. And I can't hide it..Colin says that upsets him more because he can't bare the look on my face. Still there must be a plan c. I can't understand why colins cells are so stubborn. By the way we emailed Ellen the nurse on this site. We were really impressed with the speed and detail of response. If you need to use her knowledge, do. We found that so helpful and comforting.
Take care both
Vicki and Colin 🙂
Hi Ali and all,
Day 1, FAILED. absolutely gutted. Score was only 1. Worse than last time, it started at 5 then. The chances of it working tomorrow would think is less than a snowball surviving in hell……and this is hell.
No hope for tomorrow and we don't have a plan c and the stem cell nurse is on holiday for a fortnight and no one to talk to. Sorry this post is glum, we feel it. Hard to say it will be alright when I don't have a clue
Vicki and Colin. 🙁 🙁
Hi Ali
Hope your mum is still on the onwards and upwards ladder!
We've had a good weekend thanks, but I've found lots of jobs to do to keep me busy. Colin has felt like he has the flu and some aches and pains today …..:-), could this be stem cells!
Bit nervous tonight as we are off to Bristol in the morning for a second go…..fingers crossed. Will keep you posted.
Thanks for thinking of us
Vicki and Colin xx 🙂
Hi lyn,
We can really sympathise with you and the timescales, and now getting close becoming nervous…….we are, but Colin with mm is less likely to admit that than me! It really is a roller coaster of what happens next. Last we Colin had his cyclopriming. At first they thought his blood count was too low so may not be able to do it, upset about that….then ok so happy, then he's unwell when having it done, upset about that, then fluids of boards hes well again! It was an up and down experience.
Tomorrow we are going to Bristol to have a second try at harvest…..I'm really nervous tonight. The only saving grace is that we are closer to SCT if it works, and boy am I nervous about that! It's a bitter sweet thing, wanting to get it done but scared about what to go through.
Will keep you posted and hope all goes well for you guys. By the way Colin was diagnosed in October 2011 so about the same time as your husband.
Colin and Vicki x
Andy
Keep your chin up….at least the pps are going in the right direction. You have a lot to fight for. You have been so supportive to Colin and I so we need you to stick with it. :-). I get what you say about the mixed emotions, and the highs and lows. It must be hard for you because the progress is slow……but it is progress now :-).
I'm sure professor wotshisname will have a cunning plan for you to follow. Enjoy your holiday and have a few glasses of something…..there will be something to celebrate soon, I'm sure of it.
Best wishes
Vicki and Colin x
Hi Amanda and bob
Welcome, you are right. This is a very supportive helpful place. It has been godsend to Colin and I. Colin was diagnosed with MM October 2011. Until then we had never heard of the condition. Others experience and knowledge has helped us no end.
Good luck with the treatment x
Vicki and Colin 🙂
Hi Mari,
Good to hear from you…..I was wondering what was happening. I assumed Stephen had already gone in and praps you did not have time to post! This waiting game is really hard isn't it, for all concerned. I hope all goes well. Colins new date is 24/9 as long as the harvest works this time…..Monday coming, so fingers crossed.
Hope the holiday went well x
Vicki and Colin x
Hi Charlotte
My partner Colin has mm, diagnosed last october 201-. He had a vertebrae fractur at t12 on his spine, they did radiotherapy. Is that the same as a plasmacytoma? He did not have any other lesions. He had 7 cycles of cyclophos. Dex and revlimid, and is now waiting for SCT. His pps went down to zero and light chains were 700 which will apparently be finally zapped by high dose chemo at SCT. I don't know of any of this information helps you as I am not sure how that compares to the plasmacytoma?
You keep positive and that's a great boost for anything….eat well, fruit and veg. I can't recommend any 'cures' wish I could be just look after yourself, and don't look back, you've progressed.
Perhaps you can help us too? Colins vertebrae fractured at t12. No one mentioned kyphoplasty (sorry about spelling).how did you get on with that. Can if be done after radiotherapy? Colin is worried that he has got a little stoop and has lost 3inches I height. Did your posture get affected? As the kypho helped?
Sorry to ask you questions when I feel I've been no help to you!
Vicki
Blimey Maxine,
When I read your post I felt so sad for your sister and you and the rest of the family. The mm thing is clearly no respecter of age…..when I first read up on it I thought Colin was young to have this at 55, but wow there are many many younger patients. I can understand the shock and trying to come to terms with.
Our thoughts are with you and your family. Ask any questions you like. No expert but any thing to help
Vicki and Colin x
Result eve and slim,
Thanks for the encouragement too!. Wot you two waiting for…..get off on that cruise and treat yourselves to something special. Enjoy 🙂
Vicki and Colin
