I just wanted to say that I am thinking of you all and often wonder how you are doing. I know Colin’s Myeloma journey is over but I still feel involved. How are you Mavis, Andy G, Helen. How is Tom onwards and Upwards? What about Jean ad Frank. What about Alison Stones Mum? Wishing you all the best.

I am doing a fund raising ball in…[Read more]

Its vicki here I see your friend request but I don’t know how to accept it. Happy to but it doesn’t seem to work on my profile. With all good wishes for the SCT. be positive thats so important. I know how difficult it is for you as the supporter too. This website is great to talk, and seek advice and information. The nurses are great…[Read more]

I am sorry to hear of your current situation. My husband Colin had Myeloma. It was a real roller coaster of treatment but the SCT did give him nearly 18 months of remission. Please try to keep positive. I know how difficult it is for the supporter. I was that myself and felt very helpless at times however you have a really…[Read more]

Its Vicki Heselton here, Colin’s wife.I just wanted to post in to say that I am so glad you are all doing ok. I think of you all very regularly even though I don’t post here now much. I am trying to make effort in other ways by raising funds to support Myeloma Uk and have a fund raising ball scheduled for April 2016.

I am so glad to…[Read more]

Hello All, Its Vicki Heselton here. Colin’s wife. The knitting thing looks great but it was never my strength. Eve I can’t believe you are still travelling. You are an absolute star. Hello to all of you I don’t post on here much now but I do think of you all. Tom, Helen, Ali’s Mum, Andy G. I do hope you are all doing well. I am doing a…[Read more]

Just to let you know that colin passed away peacefully at home on tuesday afternoon. Naturally we are all devastated, but the best for him. best wishes to you all

Vicki

Thanks so much for your kind words and encouragement. Colin is still very weak but I think that part of that is the emotional stress all this brings. He is eating well though which is good.

One piece of good news. We got married yesterday after 17 years together. In 4 days our friends, family and our local vicar ensured we were able to…[Read more]

Thanks for your good wishes. It just seems to go from bad to worse. Last Wednesday they took the pic line out. Because Colin’s temperatures were up and down the consultant told Colin, on his own that he had weeks not months to live. We were staggered and still are. I brought Colin home with a bag full of drugs and a foreboding that our…[Read more]

Can I just say thanks so much for your kind words and thoughts. It is good to know that there are so many people thinking of us. Its an awful situation to be in. There has been no change in the bloods and just lots of transfusions of platelets and bloods. We are both still hopeful but as each day passes and with more temperatures each…[Read more]

The worst seems to have happened. Colin had a bone marrow assessment on Tuesday night as his immune system still wasn’t doing anything. It revealed that his bone marrow was empty of everything good- leaving behind some myeloma cells. Effectively the treatment hasn’t worked. Without the hope of his bone marrow recovering so they could try…[Read more]

Thank you Maureen. I hope that Ians bloods improve soon. Is he well in himself? Sometimes its a slow burn isn’t it. Apparently blood cancers are very complicated (I guess they all are!) but I so hope that Ian will perk up soon and theres a long long remission.

Helen thank you so much for this post, You really boosted me up.…[Read more]

My colin is the same. He will sleep for England and then will perk up about 9 at night when I am whacked!!. I think tiredness is a standard of this condition plus the side effects of the meds.

Wishing you well

Vicki

I don’t have any experience of more elderly diagnosis, but just wanted to drop you a kine to wish you well. I do know of others not in my family, that are pensioners and been diagnosed. They are on maintenance treatment and doing very well- I do hope you Mum will be well. Just take each day as it comes. I think that applies to all…[Read more]

my colin was delayed twice. We didn’t realise there could be a delay and it was a real blow and hard to come to terms with as we had psyched ourselves up for what was to come. I do sympathise with you- it was hard. But on a positive note you have got yourself into a position to have an SCT so thats great. Wishing you all the very best…[Read more]

Thanks for your message. I haven’t got the hang of doing messages so I thought I would post here. Firstly I did get to the wedding- which was lovely- but very odd going without colin. I had very mised feelings about going but didnt want to let them down. Colin was fine with it.

Colin is still in hospital. Last week was horrible- he…[Read more]

I’m really worried, Colin is on his thirst type of treatment. Has had the melphalan and has been in hospital since last Friday night. His immune system has gone down to 0.00 and they are giving him gcsf to stimulate it but to no avail, he’s had a few temperature spikes but the last couple of days his temp has been 38.1 ish and he has the…[Read more]

So very pleased to hear that. Hope Ian continues to make a good and full recovery and remission.

I am so worried about Colin. He has been in hospital since last Friday. He has had the melphalan but it’s knocked his bone marrow. Despite gcsfs he’s still showing an immune system of 0.00. Worse than that he has a temperature of 38.1 and has…[Read more]

I’m ok thanks. I do worry that Colin will get so fed up at being so tired all the time that he will just give up. It’s getting harder and harder to motivate him. In terms of the SCT we are just going with the flow because we’d be grateful at the mine to get the condition under control. My family are brilliant and we have some really good…[Read more]

The consultants haven’t mentioned a second Sct for ages. They didn’t really give a reason, just saying that they wanted to,get the condition under control first and then we will see, but it was one of those we’ll see that I had no faith in. Trouble is Colin has had Velcade which didn’t work (3 cycles and the light chains went up).…[Read more]

So pleased you were able to let your feelings out. It’s definitely not easy. Colin was very self contained. He was very very anti counselling, but I persuaded him to give it a go especially leading up to sct. They were excellent and he hugely benefitted from it.he still uses the techniques they gave him and they work. Wishing you all the…[Read more]

It took 2 weeks when Colin had his. They had to send the sample over to Birmingham or bristol due to the special test equipment required. Hope the results are good for you

Vick and colin

Just catching up with some of these posts. Andy how on earth do you manage to do all this travelling and keep up with the meds and not be sleepy? Colin has pretty much do nothing but sleep and sleep since Sunday morning. He’s eating well but little energy for anything else. I know this mm is very individual but I wonder how comparatively…[Read more]

Those rigours are frightening aren’t they! Colin had those and we didn’t know what they were to begin with! Colin did have to stay in hospital for that. He went in last Wednesday eveing and they gave him bags and bags of fluid all night to hydrate, then the chemo which was 30 minutes and then bags and bags of fluid again, with a…[Read more]

Hope you are both keeping well. Helen glad to hear pomalidomide is working for you. Colin’s consultant was quite negative about it. As far as I am concerned if it works for you I hope it’s an option for Colin is he needs it.

Just going through the hoop. Colin got little success with bendamustine, although I am sure his light…[Read more]

Just tuned in. Glad Iain got through the SCT. Colin went back in too the first time round. He was in for a week. He was fine too. Fingers crossed for a long remission. Hope you are ok too Maureen 🙂

Vicki and Colin x

Update on Colin’s bendamustine treatment. It’s not working! After cycle 3 his light chains have gone down from 7000 to 6500, so given the toxins they had expected a better response. So Velcade not worked, bendamustine not working. So he’s off that treatment.

What next, no treatment for a month or more due to bone marrow taking a hammering…[Read more]

Sorry to hear Ian’s SCT delayed. As you say though better safe than sorry. Colin and I have both had the flu and so his third cycle on bendamustine is delayed a week. Debatable abouth whether it’s working. Cycle 1 it went up from 7000 light chains to 10000 but not sure if it really went up as they had no measurement after the Velcade…[Read more]

Thanks for the information. It was helpful. By the way Colin has no pp detectable. He just has light chains only. We have bt had any results from cycle 1 yet. What we do know I’d that bendamustine is like being hit with a sledgehammer, even with the steroids he has slept for most of today. We are told that’s normal. Just hoping that it…[Read more]

Vicki

Hope you get some good news with geoffs treatment. The specialist nurse was aboslutely brilliant. She was informative and encouraging. We felt like two different people when we came out of there. She is definitely worth a chat. She has time and doesn’t mind what questions you ask. Would definitely recommend it. We should meet up some…[Read more]

Vicki and Colin x

Yes I would endorse what any says, it’s much better to disclose and being totallyopen means there is no room for argument or ambiguity,

Vicki and Colin x

Just catching up and wondering how things are going? Does your get measured by pp only or do you have light chains as well?

Thanks

Vicki

Not had any experience of the pp shooting up but Colin has had revlimid and it was very effective for him. So good luck with that. It’s such an individual condition isn’t it!,

Best of luck

Vicki and Colin x

I will private message you…..colin isn’t happy I posted this as he thinks they will be cross and his treatment might be affected. I mentioned no names but it was a very difficult day yesterday. I reckon jeff must be doing ok if they are pressing on to the third cycle. Must be working! That’s good. The weird thing is that Colin has no…[Read more]

I see that you’ve all tried a variety of treatments. Did fatigue figure a large part of your daily lives. Colin is on treatment at the moment and had only the first cycle but what we don’t know is whether it’s the mm that is causing the tiredness or the treatment….. Colin was bemoaning the fact that he get so tired after doing anything,…[Read more]

Colin had 750 light chains when he had SCT and got to full remission. It is possible. It’s just important to remember that each person is different. Ian has come along way andnthismis the big chance 🙂 it was lovely to see the post from the lady who has had mm since 1996. What wonderful encouragement.

Wishing you all the best

Vicki…[Read more]

We had a very miserable consultation yesterday. It seems pretty definite that Colin has light chain myeloma because he has a pp that is undetectable. After the first cycle of bendamustine we don’t know whether it’s worked or not. The results are likely to be in next week…..but the consultant we saw was so negative and I was really cross…[Read more]

The ice pops is a really good tip! Also plenty of soft food. Plenty to drink if you can.

Vicki and Colin x

Colin gas just had the first cycle of bendamustine. It certainly has hit him hard, so if feeling rough is anything to go by he should be in remission again! The positive is they only give it to him for two consecutive days once a month with prednisilone steroids, so less trips to the hospital. The bed bits are that he has been rough all…[Read more]

Thanks for the info. I hope they find your cells, that would be better than the donors transplant wouldn’t it? I assume the donor one has more issues due to the graft v host, I think I read that? Colin is still rough. He said his arms and legs feel weak. He has no energy at all. I’m worried sick. I don’t know whether it’s the treatment…[Read more]

Yes don’t do anything too rash. Wait and see what the consultants say.,as long as your husband is able to care for himself then try to keep things as normal as you can for as long as you can 🙂

Vickimand colin

How are you. How’s frank doing?. Velcade didn’t work for Colin so he’s just had a first cycle of bendamustine. It’s hit him really hard. First cycle so no results yet. It’s the first day today he’s felt better today and he had treatment 26th JanuRy !

Hope you are both ok
Vicki and Colin xx

Vicki and colin

Helen firstly so glad you were able to enjoy the wedding. A great day! We haven’t had a clinic since Colin was given this first lot of bendamustine. We are due on 24th February I think. It’s been a hard week. Since I last posted Colin has continued to be very poorly which ended up with a hospital visit (unplanned) last Monday. Even the…[Read more]

Vicki and Colin x