Hi laura,

My partner Colin’s light chains were 35,000 when first diagnosed. Until your post I hadn’t seen anyone else anywhere near that, so welcome to the club! Relatively Colin’s pp’s were lower at 17 when diagnosed. They got his light chains down to 750 after 7 or 8 cycles of revlimid, Des and cyclophosmahide. He had a successful transplant in…[Read more]

Andy

You were the first person I thought of when Colin was told it wasn’t working. You are the example I use. There’s always hope and good on you with the pp down to 6.5. That’s great! Any chance of a transplant? Now we’ve got over the initial shock we are itching to know what happens next. Ironically Colin is really well today except the…[Read more]

Hi all

I lost the first post so trying again. Velcade not working, light chains up from 4 to 7000. Not sure what happens next but it’s rubbish. We have to wait for next weeks treatment appointment, turn up for it, won’t have it and then wait for a consultation appointment to see what happens next.

It’s so hard. It’s the first time we’ve heard…[Read more]

Hi jacqui and Linda

Sorry to hear of the relapses. My olio was the same. A huge blow. It wasn’t supposed to happen for years and years in our minds. Still….Colin’s on the third cycle a
Of valcade And seems to either Get very very tired or is like a human Dynamo on the steroids. It’s a real roller coaster. We only have one set of results and the…[Read more]

Hi helen, Jean and frank

Glad to hear from you guys. As I hadn’t been here for some time this new forum takes some getting used to. Glad to hear you are feeling good helen. Colin is nearing the end of cycle one ( week off is 28/11) then consultant 4th December to see if it’s working…..best Christmas present of all please :-). This treatment…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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,…[Read more]