Hi mary and Charlie,
Sorry for the late reply…..missed the post. We hope Charlie is doing ok and you are keeping your head above water Mary :-).
Colin had many infections! And we were told when his temp went 37.5 and above we had to phone the hospital and invariably they said come in. Occasionally they let him come home with oral antibiotics, but at least 3 times he was kept I. Hospital with intravenous antibiotics. Once they let him home at 4pm and then at midnight I had to call an ambulance because he had a big temperature spike and he was bak in again! It did settle down though. What I am saying is yes he did have the emergency antibiotics.
Hope your appointment went well 🙂
Vicki and Colin x
Hi Tina,
Just wondering how you are and how it's going?
Vicki and Colin x
Hi chris,
Just joining in to see how you are doing :-). Hope you received your little cells safely back today and you aren't feeling too bad x.
Fingers crossed forma very speedy recovery……Colin building up for his go monday 🙂
Can't believe John ross is old enough to be in prison, I'm sure Dallas want like that when i was young!
Keep your chin up 🙂
Vicki and Colin x
Hey Kerry,
You are just being honest, no worries with that. Colin Has mm and I have felt so helpless and frustrated, are the doctors doing all they can, this question, that question, food what sort, drink fluids, enough, not enough?, why us, why him, life's unfair etc…..and there is only the two of us at home. You have all the rest to worry about too! It can seem really overwhelming.
I hated hospitals before all this, medical stuff was not me, I had a job to even visit someone in hospital. Now I have no problem because I've had to and found something within myself because I wanted to be there for colin. Even to the point of considering changing career to something a bit more 'medical'. Who knows. What I a trying to say badly, is that all the feelings you are having are natural and you will find something strong in yourself, when you won't want to run, you will find a new routine and learning to get help from others to help you…..and getting some me time. That said all this takes time because your lives, you, Melvin, kids and even the dog, have all been turned upside down. It will get better.
Hope this makes sense and please rant as much as you want, this forum is a godsend 🙂
Vicki and Colin x
Nice photo chris, by the way. Only just noticed to click on it!
Hope Lena is feeling ok, and trying to keep relaxed!
Vicki and Colin x
Hey chris,
Tuning in to see how it's going. Did you have chemo today?. Hope all is going well and that the accommodation and food is up to spec! Dallas….. John Ross, he was a nipper last time I saw Dallas! Keep you chin up and go for it 🙂
Colin has had his line in for ages after all our false starts! He did get used to it, and has found it a godsend as his veins have taken such battering they have a job to get blood out that way.
Good luck and hope you have a smooth run 🙂
Vicki and Colin
Come on Andy, my money's on you :-). It's a real drag for you and steph, but hey Americas not far so if that's the closest match. Andy 1 mm nil! 🙂
Vicki and Colin x
Hi all,
A real flurry of activity so will try and cover all the bases! We put a photo on cos we thought it rude to speak to all you guys and know what you're like and we remained anonymous!. The new date for SCT Jean is Monday 29th oct, that said we did geta letter saying Thursday 29th but we think that's an admin error so keeping us on our toes!
Re the dex, Colin seemed to find those worse than the others, although revlimid seemed to knock him as well….but I guess that was what it was supposed to do!
Andy I see that your pps went up a couple or so on the other post! :-(, bet that's a blip. I am sure I read somewhere else that another forum friend had gone up a bit but it was a blip, so here's hoping! See I told you you just need more sun to bring them down. Nothing boring about going to same place, food and lounging by the pool. How great would that be now and given the weather is wall to wall mist and fog down here!
Helen, it has been lovely hasn't it!, well last weekend was, wall to wall fog now. We are going to see some friends tomorrow for a nice meal, and then having some friends over here, takes our mind off what's coming! All safety checked for no bugs and viruses!.
Ali, I could just envisage you and your mum at the theatre!. I would have had a good go at removing everyone who I thought was a threat :-), and probably would have taken my own detox…..me over react, never :-). I'm sure mum will pick up things as we all have done in the past and not thought about it…..just brings it all to the fore after what your mums been through. Hope she is feeling a bit better now?
Ann and Peter, good to see who you are too! Glad to hear that peters results are looking good and SCT date is looming. I hope the other tests come back ok, maybe the swelling etc wil settle down when he comes off the induction treatment before SCT?. HospitL for Christmas eh…..is there ever a good time and as long as the outcomes good who cares….the you can rebuild and start living life again, as all our forum friends have said, go for it. We intend to, too!
Adamsp, thanks for the good advice….at the mo we'd settle for anywhere by the sea, but for now it's our gate and bracing ourselves to get through the SCT challenge….but you guys have a great holiday :-).
Tom, you are right, we've had wall to wall winter for the last two days, we don't think it's got light really yesterday or today! We are hoping our date is definitely Monday 29th, it's Thursday 29th on letter so we assume just an admin error! The build up has been like the krypton factor….we have to guess what happens next 🙂
Will keep you all posted, and bracing ourselves for a cols snap!
Vicki and Colin x
Well done Kevin, we all love good news stories!
Jean, I'm pretty sure they don't have to get the pps down to zero. I think one of the key indicators is this balancing of kappa and lamda (there is this ratio but I can't remember what it is). They look at treatment scores form example waiting for the pps and light chains plateau, or that the side effects on the body become too much.; for example in colins case his pps and light chains kept coming down (for Which we were v v v grateful) so they kept going with the treatment until it looked like colins body was starting to struggle (in the last couple of months it took longer for his marrow to recover to move onto the next cycle.) so they stopped it then. In short scores don't need to be zero 🙂
Hope Frank is feeling a bit better 🙂
Vicki and Colin x
Hi Andy,
Thanks for your support :-). I really hope you get to see the main man next appointment. Sorry you are feeling poorly at the moment. We hope your pp's are continuing to come down. Maybe just a bit more sunshine would help them along! We were fed up with the change of date but hey another opportunity for me to make sure Colin has some decent food…..roast pork etc and a really nice berry crumble for afters!
Ali, yes I thought it about time we put a picture on, it seems a bit rude to talk to everyone and not no who we are…..hopefully the picture got our best sides haha! :-). It was a real blow when they changed the date but as I said above, more chance for col to build himself up a bit. I read earlier that your mum is doing really well….we are so pleased and the hair starting to grow back, that's great :-). Hope you and your mum have a great time at the show and the meal…..how nice to do some normal things :-). Roll on for us too!
Vicki and Colin x
Hi nettie,
Colin was told to avoid pools and gyms, too much infection about…..what about some home exercise like exercise bike or something similar. Bit antisocial I know but it would keep you ticking over until you are able to use pools again?
Vicki
Hi sarah jane,
My partner Colin is on mx1 trial. He had revlimid,dex and cyclophosmahide. He had 7cycles and pps and light chains came down to virtually nil. He did have some ups and downs, and we did spend a few occasions at the hospital with temperatures. However overall the medication did the trick and he is waiting for an SCT now. I cant say it. Wasn't scary with the side effects listed, but we knew this was the best option for Colin, and they have to record side effects even if it only happens to one person,we are told 🙂 Colin did feel tired a lot, bit dizzy,and a bit sick, wasn't sick though. Colin worked on and off;his employer let's him do work from home and then go to work when he is able. We did a HR plan for them to consider and they agreed it.
Colins bone marrow took quite a hammering so overtime it did take him a while to recover after each cycle, however frustrating he kept responding, re the dex Colin could get quite emotional sometimes, tears usually. But that soon passed
With the best of luck to you, and sorry you have to take all this stuff, but it does work 🙂
Vicki and Colin x
Hello all
Thanks very much for your kind words and advice, as usual much appreciated. We were a bit fed up but what can we do, so instead treated ourselves to a really nice meal out :-). Colins appetite has been a bit up and down so good to see him eat a bit. It gives me an opportunity to build him up ready for the rubbish food in hospital, even if he feels he can eat it.our hospital object to food being brought in and if I wanted to would have to sign a disclaimer, health and safety 🙂
Anyway, chris, what is your new blog called and where do we access it. Would like to keep a beady eye on your progress :-), wishing you the very best of luck and a speedy recovery of those cells. Take care and enjoy your last day before the challenge begins :-). By the way we hope you enjoyed your meal last night 🙂
Vicki and Colin
Hi all,
Minor setback!. Went to see the SCT nurse yesterday for final consents. SCT has been delayed a week because there is nobody avaialable to come up from Bristol to reintroduce the stem cells on the days required. We were a bit shellshocked really as we weren't expecting that. Still regrouped and head back together. Will have to be a week behind you chris 🙂
What we setbacks with getting the cells, we went into a fit of laughter, it must be hysteria! Ha ha
Vicki and Colin x
Kerry and Melvin,
What a nightmare you two have started with. I feel humbled by what you have gone through. My partner Colin was diagnosed age 56 and had a vertebrae at t12 in his spine, damaged by this condition. It was a bxxx nightmare when we heard what he was diagnosed with, and no understanding of what the he'll it was! I've tried to understand as much as I can. Up to a point we've been lucky, if that's the right words :-), in that colin had minimal bone damage but v high light chains and pp levels of 17 to start with.
Happy to be of any help whatsoever, I am 45 and find it all very scary and being a supporter can be very tiring, both physically and emotionally. Feeling helpless but still doing all the chores etc. We thought there was no light in our tunnel but it does come, slowly. We are now 12 months later at a stage where Colin is fit for a transplant, godwilling Melvin will get there too x
Vicki and Colin x
