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Ali 9 years, 12 months ago.
Anyone heard how Colin is doing? Vicki not posted for some time now.
Maureen
Hi Maureen
It’s me…..by chance I logged on tonight! We have had a really tough time. Where do we start. I posted way back in July I think when Colin’s light chains started going up. That was a real blow. But Colin seemed really well! Everyone kept saying it! Anyway we decided to try and enjoy ourselves in the hope that things might go back down. Needless to say it didn’t. I must admit I am the poster on this site and went through a real spell of being in denial! I feel bad as that’s so unsupportive of me!
Anyway we did a major decorating project which we’d already started and I’m rubbish at it so it was a tough challenge with Colin starting to feel more tired. We had hoped that treatment would not happen til the new year but September visit to the hospital said it needed to star. That’s when things got difficult. Firstly Colin had shingles so that delayed treatment, then Colin’s mum died at the end of September so we had all of that to deal with…..then we turned up at the hospital two weeks ago to do consent forms. I mentioned Colin didn’t feel all that well, turned out he had a temperature and viral infection. Two weeks of antibiotics followed.
Finally today we are back in the bandwagon with first velcade injection, chemo tablets and steroids. 5 week cycles. His light chains are 5600, with 16% myeloma cells in bone marrow. It has been tough today. I’ve been weak and just couldn’t come onto the forum. Last night I had a good cry and now feel 110% able to deal with it….which is rich seeing up not the one having all the crappy treatment. Colin has been a real star and I’m back into asking 101 questions at hospital but prescripted, as I remembered Helens advice that there might be times Colin doesn’t wnat to know stuff!
Here we are back then! How’s things with you Maureen? And all you regulars.
Best wishes
Vicki and Colin xx
Hi Vicki
Sorry to hear you have both been having a tough time. Myeloma is so unpredictable and we try to live our lives as normal as possible until a relapse.
Velcade didn’t work for Ian but he didn’t have cyclophosphamide with the dex. He has just finished cycle 3 of revlimid and dex. FLC are down to 329. He had a blip where they rose by 200 so I was in a panic thinking revlimid wasn’t working. I had a visit to doctors for diazapan. I don’t take it all the time, but need it when things are going wrong.
How.long did Colin get in remission after SCT?
Hope all goes well.
Maureen x
Hi Maureen
He had the transplant in November 2012. Apparently his light chains started going up in February 2014 but they didn’t tell us as they thought it could be a blip so they had to wait for an upward trend! So he got nearly 2 years but really showing signs from now only.
It’s such a difficult thing to deal with because you can’t see what’s going on and most of the time he looks good. Sometimes more energy than me!, glad to hear that Ian’s light chains are down.mrevlimid seems to knock things well into touch. Colin’s like chains went down from 31000 to 17000 in one cycle, they were so surprised they had the results checked as they thought it was a mistake!
What’s the next step for you guys. Has Ian had a transplant?
Vicki
Hi Vicki
Like yourself I’m not often on the forum. Looked in a few weeks ago and saw Maureen’s post and also wondered how Colin was doing. I’m sorry to hear that he’s having a hard time. Those bloody shingles are awful. Frank had them a few months ago and Dr put him on pregablim. Has Colin been taking them. Frank can’t get off them as he has terrible withdrawal symptoms. What is the next step for Colin? Ian Colin and Frank were roughly round the same time so although not often on forum Colin and Ian are in my thoughts. Hope things go well for him
Take care
Love Jean x
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 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 Vikki
Has Colin started the treatment yet? Frank got lots of cells but consultant put them all back as she said that he’s too old to have a second transplant. I still think that consultant went ahead with transplant – PP’s had been dropping for months and as his next birthday would be 70 – the cut off point – she went ahead.
Vikki Frank missed taking 1 tablet and he was in cuckoo land. So I don’t think he will be off them.
Tom is on face book, he’s going through treatment and then going for a second STC. He’s the usual upbeat Tom. Him and Elaine are just back from Majorca where they had a ball. I play scrabble with Elaine. I have emailed Helen and Jo. Have not heard from them yet but Helen was having treatment and Jo was having problems with kidneys.
Consultant put Frank on 2 monthly visits. Says PP’s non detectable and light chains and ration are good. Still dread visits as the bloody disease can creep up and bite you in the bum
Hi Vicki
We don’t know if Ian will get a SCT, it’s wait and see how low his FLC come down but some people have been on revlimid for years. The dosage of dex will be reduced to 20mg for the first 4 days on his next cycle. I am seriously thinking of Ian being referred to The Beatson in Glasgow as they have myeloma specialists. Consultants at Ian’s hospital don’t believe in adding cyclophosphamide. Can’t understand why every individual is different but all given standard treatment. Myeloma nurse said we need a consultant who thinks outside the box.
Ian gets very tired on the non dex days. He’s sleeping on the chair at the moment. He has come a long way and we changed the car to an automatic which he can now drive. He’s also going to the gym twice a week to build up his stamina. Think I should join him.
We are off for a couple of days to a lovely hotel near Darlington , Rockliffe Hall. Haven’t managed to get abroad yet but had a lovely holiday in Cornwall.
Keep in touch and hope all goes well for Colin x
Vikki last of my post went missing. Rabbiting on too much. Hope things go week for Colin and Maureen hope thing also go well for Ian. I always thi k of Colin, Ian and Frank as SCT buddies
Keep in touch
Love Jean x
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 Maureen and Colin and Vikki
I hate this new web site!
I’m just signing in here! Just to prove I’m still around. I’ve tried to post stuff but the connection keeps crashing and I can’t be bothered to rewrite everything. ( hmmm sounding grumpy already and only just started the dex! look out world!)
No real news from me- I feel tired but have relapsed again, started Pomalidomide and dex today, so let’s see how this works.
Hope Colin and Ian manage to beat the beggar into submission.
Love Helen
Vicki. It’s me!
I’m never on here, today I found posts from The lovely Helen and now you!
So sorry Colins relapsed.
Got to get ready for work now but will fill you in later.
Love Ali xx
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