Wishing you the very very best Noel, good luck to you
Vicki and Colin x
Hi Karen and Megan,
It’s a real blow when the dreaded relapse word comes in isn’t it. Never mind wanting 5 year remission, we wanted 10 years and more. In the end we got about the average. It is very very worrying and it’s hard to get your head around to begin with, but try to be positive it is hard!
What will the treatment option be? What treatment is Phil having Megan? Colin had velcade but that didn’t work for him. He’s on bendamustine. It does seem to make him feel ill but this is the first cycle so we don’t know what to expect…..
Good luck to you both
Keep your chins up guys. Remind me is allo the donor transplant and auto the own cells sct?
No one has mentioned the auto one to Colin just the poss of a second own cells sct if we can get to remission and they can get the cells out.
As was well documented had real problems last time! Only just got the two million and they had to throw the kitchen sink at it to get that!
We must get some holidays in too!,
Vicki and Colin
Ps colin is on prednisolone steroids with the bendamustine and the steroids seem much kinder on the sleep stakes
Hi all
Firstly helen, wow love your hat and the outfit. You look stunning!
Helen, I’ve been barred from asking loads of questions without prior approval by my other half……he says I go into over drive! It will be interesting to know about the lights chains v pp. We seem to be suffering a lack of information at the moment. They don’t seem to volunteer the light chain numbers unless we ask and no one has mentioned pp since he was told he was in complete remission first time round, but I will ask.
He’s been pretty rough since he had the treatment. After the two infusions he had a really bad head where he said his head felt three feet behind all the time. That was Saturday (missed my birthday meal) and the same over the weekend, then in bed Monday and most of Tuesday. Today up, back to bed, up then now back to bed,.,..so not great. Hope this is a good sign that it’s working. When he was on velcade it was like he wasn’t on treatment at all really other than a bit of tiredness. Not sure about SCT we need to get there yet!
Andy sorry to hear you’ve been under the weather with a short stay in nhs hotel! Hope you are feeling better now. How’s the pps? Any more news on the Sct possibility? Glad to hear you’ve got the hols booked, we are not able to go far at the moment. The medical team got twitchy even when Colin was not too bad so we haven’t bothered yet! Too cold.
Ali, glad to hear your mum is doing ok. Am I right in thinking she has spare cells in the bag so she was able to delay her Sct? How does that work…..do they just wait for signs of things going on the move the wrong way and then do the SCT? Hope all stays going the right way though!,
Vicki and Colin x
Thanks Jill Very much hope that your Mum continues to do well. Its always good to hear the good new s stories as they are encouraging to the rest of us!
Vicki
Hi Katie
We too have heard that turmeric is good. We have bought some but colin hasn’t taken it yet. I hope your mum has some good results and that she will be able to take her holiday. Remember each person is different so often their figures will be different. in colins case his PPS were lowish at 17 but his light chains were 35000 which was massive.The consultants and the medical teams are all very skilled and knowledgable so will be keeping a close eye on your mum which is a good thing.
take care
vicki and colin x
Hi All
Thanks very much for your thoughts and support. We have a clear path of where we are going now! The velcade was prescribed with Dex and Cyclophos so I think we can say it didn’t work. Light chains went up from 4000 to 6950!
So they felt it wasn’t worth giving that another go, So the plan is that Colin will have this Bendamustine. He will have an infusion on a Thursday and Friday 1 a month with prednisilone steroids for I think 4 days of each cycle.
Jill no one has mentioned what his category is so we don’t know if he IGA. They picked this one as they are trying to avoid Revlimid/thalidomide at the moment as Colin was so poorly on them first time around. We hope this different treatment will work but we thought the consultant said it was between 30-60% effective on patients so who knows? Our consultants haven’t mentioned PPs for ages and seem to be focussing on light chains so I am guessing that maybe some treatments are better for light chains than PPs or it could be the other figure is lower,,,,we don’t know.
This all starts on Thursday so lets keep our fingers crossed,
Ali, not a techie, don’t know how to do Facebook!
Vicki
Hi Linda
My Colin had an SCT in November 2012. Full relapse was June 2014. He started velcade in December 2014 but it’s very obviously not working for him. Whether to have an Sct is always a difficult decision as there is always a chance you will get that long remission. I don’t wpknow whether Colin would go through it again but like you it will ultimately be his call. As Andy says though it does buy you time for the next set of drugs to co e on stream
Best of luck with it
Vicki and Colin x
Andy
That’s absolutely brilliant news, so so pleased. Just goes to show that being positive, stubborn and down right determined can achieve the right results. If anyone deserved some luck after going through all the treatments it’s you!, here’s hoping that the professor can come up with the goods and your little cells will come up trumps at the harvest.
So pleased!
Vicki and Colin x
Hi Val
We were told that we couldn’t travel abroad for 6 months after the transplant. Because Colin had been in and out of hospital with infections we were glad not too! Always best to asks eh consultant, even after a year we asked the consultant about going to mauritius they were ok with us going but we had to take antibiotics with us just in case!
Vicki and Colin x
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 2012. He was then in remission until June last year when the light chains started to rise again. So now he is on treatment again.
However the good news was that they could get them down. Like you we were in a state of shock as we’d never heard of myeloma and he hadn’t been ill. As was so well documented on here! Please ask any questions I will do my best to answer. Colin was in and out of hospital with infections but the team are brilliant as they have seen it all before!
I don’t thin ok we will get over the shock of it (cancer wasn’t in the game plan, like so many) but you do learn to live around it and try to take it on the chin.
Best of luck to both of you, this forum is a godsend by the way it helped sooo many times 🙂
Vicki and Colin x
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 tiredness…..still we got to keep going. The worst thing is that we don’t get all of the information and seem to have to wait, we don’t know when we will know what happens next. Still we have no choice. As you say keep positive and enjoy it day. Hope steph is ok too 🙂
Vicki and Colin x
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 treatment isn’t working. I don’t know what we do next. We’ve had evening meal talking about anything but mm but really that’s all we really want to talk about. Who knows. I thought velcade was supposed to be the new promising treatment. Just goes to show how individual this condition is
Best wishes to all
Vicki and Colin x
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 light chains came down by 1000 but we have nothing to measure that by. We might know cycle two results tomorrow but don’t see the consultant until 12 fen to understand what they mean. I just hope its a reduction !
Hope you are well
Vick and Colin x
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 doesn’t seem to be as aggressive but the dex is still the same, grumpy and no sleep, and that’s just me!
Colin is a real trooper yet again and is facing this with (on the surface anyway), real determination. He’s snoring on the sofa at the moment so we can always tell when the steroids are phasing out otherwise he’s up and about like a bionic man! It’s too early to think about Sct. Wait and see. What about you helen did you get an option for another Sct? What treatments have you had, how are you finding it
Take care all
Vicki and coin x
