Hi Andy
Hope all going well with you. We are nearly at the end of cycle 1. The dex is back with a vengeance. Colin seems to have really suffered this time with sleeplessness and hyperactivity. They’ve decided to phase him off he steroids rather than having two days on and then bump. Ref the SCT the one consultant said he could bein with a chance and the other said not…..so we are not rally sure. From the one that says yes she did say that if we chose not to go down the SCT route then there wouldn’t be another chance. So it’s a dilemma. Let’s just hope this regime works as wll as the first time round.
This time the side effects don’t seem quite as bad or is it that we are getting used to the routine….is that possible? Hope you are doing ok Andy and trust that you are managing to enjoy yourself in and around the drugs.
All the best and stay well
Vicki and a snoring on the sofa Colin 🙂
Hi there
From Colin’s treatment first time round it did take home some while to recover from the initial treatment. Tom fellow mm’ers said you will just turn a corner, like a light switch being turned. The SCT isn’t pleasant And it does take some while to build up the stamina again but be patient and build yourself up daily
Take care
Vicki and Colin xx
Hi Andy
Apparently the prelixafor that boosts the bone barrow cells production is available here in gloucestershire as a matter of course so perhaps that will help you? I do hope so if that’s what you want.
After the first SCT Colin said he wouldn’t want it again, however one consultant said it was an option and the other didn’t. Current thinking is that if we are offered it he will go for it….we shall see if this treatment works. All veing well. On week 2 of valcade,dex and cyclophos. We are hoping to have friends over for lunch on Sunday fingers crossed. Keep well and enjoy your weekend!
Vicki and Colin x
Hi Megan
Thanks for that I was thinking about Tom too? Also how are you guys doing? Colin has started his treatment…..so far so good
Vicki
Thank you peter. Colin had one job lot of radiotherapy. They said it really did the job, although his back is a weird shape now which he hates but to be honest looks worse to him than me. I’m just glad he’s here and he’s reasonably active. Week 2 of velcade doesn’t seem too bad so far! We are having friends for lunch which is a boost . This would have been unknown first treatment round.
The height thing has been difficult for Colin and like you he said he is looking up to people he used to look down on, which doesn’t help as my family are quite tall, still grateful for small mercies. Hope you are feeling ok and next treatment is more imp active for you
Vicki
Hi all
We have just started week 2 of treatment, velcade and cyclophos and dex. It’s weird, Colin has been quite good really. A bit of chemical heady feeling and some fatigue but otherwise the steroids are doing their job, if a tad grumpy, although he won’t have that! I do worry that because his side effects seem limited ( which either he isn’t saying or we are getting used to it) I worry it might not be working. I hope I am just being irrational.
Jean I’m glad to hear that frank is doing well. Colin hasn’t had any problem with pregabalin. Strange how the tablets affect each differently. Long mY the remission continue!
Maureen glad to hear that you had a great holiday in cornwall. Have a great time on your mini break. I’ve just registered for the coffee morning kit and have a few people making cakes for a cake sale at work on 28th. I might feel helpless with all this but at least I can try and make some money! Have a good weekend all x
Vicki and Colin c
Hi there,
My partner was diagnosed in 2011. He had one dose of radiotherapy for a fracture at t12 in his back, he went on myeloma X11 trial taking cyclophos, dex and revlimid. It worked very well,for him. He had 7 cycles. The big issue for him was getting the stem cells out for,the SCT. It took 3 goes and even then he only jst got enough!
He got about 2 year remission. He has now relapsed and started velcade with dex and cyclophos. Determined to beat it again. When not on treatment Colin has been really well
Take care
Vicki and Colin x
Hi there,
Colin was diagnosed as 56 in October 2011. I don’t think I will ever forget and neither will he. All the usual feelings of upset, anger, disbelief etc. What we have realised though is that we must be strong as a team just supporting each other. Believing it can be beater, asking questions and making sure the best treatment is received.
Good luck to you both
Vickimand colin x
Hi there
Blimey they are giving you the run around. On a positive note I would have thought if mm was in the frame they might have told you in hospital? I would like to guess. There are so many illnesses with similar symptoms. It’s worth remembering that mm is an exceptional diagnosis as it’s very rare, however that said since Colin was diagnosed I have discovered 4 people locally!
I would make an urgent appointment with you Gp and insist they go through all of the results!
Best of luck
Vicki
That’s absolutely great news. These are the stories that we need. Good news encouragement stories. Enjoy this, enjoy your completely remission it’s exhilarating.
Vicki
Hi peter
Thanks for this. It’s very interesting to hear that you got better remission from the meds as opposed to the transplant! Colin only just got enough cells for his first SCT so who knows what or if he will get enough for a second. He did say he would go for it if offered.
He had a fracture of t12 in his back, thankfully his Gp was on the ball as a consultant (private) missed this even though the radiographer put it in the report that myeloma needed to be ruled out as there was acute wedging at this vertebrae. Not a good start and it still haunts me!
It’s encouraging to hear that the meds are doing well for you. Let’s hope they keep those drugs coming for all,our sakes. One thing that Colin has not adjusted to is that he lost at least 3 inches in height. He doesn’t like that. My thought is thank goodness you are here….but that’s me.
Keep well
Vicki
Hi Jean
I was wondering how you and frank were doing! I’ve also been looking to see if there were any posts from Tom, Helen and Ali….hope all is ok with them. Colin’s next step is this velcade along with dex and cyclophos and see what that brings, dependant on which consultant we see, one says SCT is possible and the other says unlikely.
How is frank doing?
By the way Colin has been on 150mg of pregabalin morning and night for 2’years some hasn’t really come off them. I do like the but at least he is only on very low dose morphine now. The last time he jus didn’t take morphene when he was high dosage he went cold turkey…..not nice and we didn’t do that again. Came off gradually. Even the doctor from the local hospital phoned up to see how he was! Funny looking back but wasn’t has the time,
Vick
Hi Lynn
Yes it does come as a blow doesn’t it although you know it will happen but never think your circumstances will be early relapse. Colin had real trouble getting enough cells for one transplant. Dependant on which consultant we see, one said it was on offer the other said probably not. After last time we thought we wouldn’t go through it again but only this morning Colin said he would,if on offer and he could,get his cells out.
How is your husband feeling? Colin felt quite well until he started the treatment on Friday now he’s got muzzy head, fatigue and just feels downright flat. Colin’s results seem to be more light chain based rather than pp , they never mention that just the light chains.
Just hope this round of treatment can knock it on the head big time. I’m more balanced now and back to focussing on the supporting troll. Thanks so much for,your reply it means a lot
Vicki
Hi eve,
As always positive and practical. You are right you can go round in circles with this. I still believe if I look long enough I might find that cure! It must be tough right now as slim and mm were the focus. Loss of your loved one is one aspect…..doing and caring is the other. What to do now eh? Glad to hear you have family close by, it’s funny eve but you always have an image of what people might be like….based on the extracts on hereI imagine slim was like a naval commando….a tough cookie knocking this all back right to the end. Memories will be good x take care vicki
Dear both
Just a quick line to say you are both inspiring. As you may know Colin has relapsed. He has just started velcade, dex and cyclophos. Hope it works well and quick. Peter how long have you had mm, i get the impression you have had a few treatments twice. Do you mind me asking….. Do you feel well generally. Did you have an SCT? The big question of us if all goes well and if they can get the cells, whether second SCT is a go-er.
Keep,we’ll all
Vicki
