Maureen
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 a blinding headache and a head that is very sore. They don’t know what the issue is but he has had this bad head for days. He’s very poorly today and I am very very worried. With no immunity he’s totaly reliant on the antibiotics and is on his third sort.
No consultant today so hopefully we will know a bit more tomorrow
Best to you both
Vicki and Colin x
Hi Andy
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 friends who help. What i find difficult is coping with the random hospital appointments and the time keeping and keeping my job going. Most of the time I can get someone to take Colin to hospital but often have to pick him up and the times are never on time!
His immune system is way down today so we are a bit concerned he will be in hospital by the weekend, all in all Andy its a slog but it could be way worse. I’m just happy to have Colin here! As you say trying to enjoy each day as it comes. But for Colin’s sake and mine it would be nice if his energy could boost as he was always a very active man and I know that gets home down. Still won’t be long before we can get back on our bikes…..literally I hope.
You and steph take care and carrying on enjoying yourself. As I’ve said before you keep us inspired!
Vicki and Colin x
Hi Maureen
Hope Ian is still on the mend. It’s so difficult to be know who to trust and what to believe. Colin’s immune system has gone down to 0.15 so he virtually doesn’t have one! But they have let him home with gcsf! Bang goes Colins chance of coming to the wedding. My mum is going to stay with Colin and I an going for the most part of it ( not looking forward to going on my own but the team I work with are going so that should be ok.
We aren’t really thinking about SCT at the moment as we just want to get him to a remission. At the moment there seems like nothing will knock the light chains into touch. Here’s hoping as his bone marrow is taking a hell of a knock.
Where at the myeloma specialist hospitals, do you know. I thought Dai used to say it was Nottingham. Sometimes I wonder whether haematologists are too general and there needs to be someone intervening that knows about mn in detail
Hope the weather is good for you. Lovely here
Vicki
Hi there all
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). He had bendamustine first cycle went from 7000 light chains to 10000 then down to 7000 the down to 6500 but the response was too feeble to carry on. Both have really whacked his bone marrow.
Now he is on the first cycle of melphalan and dex. We will see what that does. What we do know is that he had bloods done today and all of his readings are down. His immune system is down to 0.15. We are amazed they have sent him home! He has come home with 6 days of gcsf. I so hope this works as I don’t know where we go from there since hs has 50% plasma in his bone marrow so I doubt there is much wriggle room from that.
Hey ho
Vicki and colinx
Simon
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 very best
Vick and Colin
Hi there
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
Hi all
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 Colin sleeps more of less than anyone else?
You seem to do really well with getting about. Whilst Colin’s on treatment we do very little as he is so exhausted, this might be a dumb question but is it because apparently he has high light chains but no pp showing. He had 50% plasma in his marrow before this treatments started?
You seem to be having a great time despite the mm and I take my hat off to you.
Helen, the pomalidomide seems to be working for you. Do you have light chains or pps? Our consultant wasn’t over struck on Pom and also didn’t seem overseen on donor transplants. How can it be different from place to place. I’m a bit worried we are running out of options and Colin won’t even be fit enough to try and enjoy time remaining! This is a very confusing condition, I don’t think I understand it a great deal more other than its individual and no one knows what causes it!
Mavis; hope you are feeling better soon and able to travel to see your daughter. Are you still in remission Mavis? I don’t think you had SCT did you? Hope you are feeling tip top soon x Vickk and Colin x
Hi Maureen
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 diuretic to make him pee. He peed for England, up 13 times in the night!
He was back home Saturday afternoon. He was ok on the steroids on the Saturday but Sunday, Monday and today he has been rough!
How is Ian doing?
Vicki
Hi helen and Andy
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 chains came down by 2000 after the stopped it. Colin might have got the figures wrong though as it wasn’t a consultant it was a blood transfusion as his red cells were done. He had a bone marrow done and he had 50% plasma, so they started treatment last Thursday with melphalan and dex. He’s just come out of hospital on the weekend.they couldn’t explain it as his latest reading showed his immune system come up to 5, normal but they said it would go down. We have been invited to a wedding Saturday but judging by today he’s as rough as so I doubt he will be able to come (but I so hope so).
Our hospital said they don’t refer people for 2nd Sct in Colin’s case and nor for a donor transplant. I wondered why some do and some don’t. Really stressful as Colin’s has failed on Velcade and bendamustine. Revlimid was first treatment before he has SCT. I am more and more worried. I do look on the forum often but sometimes can’t post. Hope you are enjoying your holiday home helen and Andy you are ok xx
Hi Maureen
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
Hi all
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 and bloods not recovered properly. Plan c is two options, at least there are some! One is take revlimid and dex until it stops working or two big whacks of melphalan over two months to see if it will knock it down; they said enough to whack the bone marrow down, nearly like a transplant but not quite as he has no stem cells to put back in, unlikely option of a second transplant due to bone marrow issues……it’s pretty hard going. The consultants said it wasn’t a bad day and I suppose it could be worse, the light chains could have gone up again. Big worry
Vicki
Hi Maureen
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 didn’t work! 2nd cycle light chains back down to 7000 so we shall see what the 3rd cycle brings!
Considering he has not been on treatment he’s very tired!
All the best
Vicki and Colin
Hi helen,
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 will boot this into touch, we have had a really good meeting with the specialist nurse, very encouraging and talked about lots of options if this bendamustine works, here’s hoping. I think it really makes a difference if you speak to someon who is positive. Hope you are feeling ok?
Vicki and Colin x
I am so sorry to read and hear this news, it’s shocking. I can’t believe you have had to suffer this. Thinking of you at a sad and distressing time
Vicki
Hi Jacqui
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 time. Colin is in treatment at the hospital on a Thursday and Friday once a month. But he has got to have bloods done there every Monday. I go for consultant appointment which is on a Tuesday, then we have hospital in a Thursday and Friday.
Our next clinic is end of March……
I reckon if geoff is having cycle 3 it must be working for him 🙂
How are you feeling jacqui?
Vicki and Colin x
