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…[Read more]

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 (…[Read more]

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).…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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,

So sorry to hear your mom is not feeling well, especially after she responded so well to the original treatment. I think you need to talk through your concerns with the nurses here on the myeloma UK discussion site. They will be able to advise you about issues to discuss with your Mom’s GP and consultant.

Regards

Jan

That’s really good news. Ian has been through a long journey to reach SCT. I hope all goes well.
Regards
Jan

Hi,

From experience, the test can take up to two weeks for the results to be returned to your consultant depending on where the results are analysed in the UK. Usually, both a blood and a urine sample will be tested during the diagnosis of multiple myeloma because some proteins, such as the Bence Jones proteins (free light chains), may not show…[Read more]

Hi,

Sorry to here about your Dad’s continuing back pain. When three of my vertebrae collapsed in 2010 whilst sleeping in bed, I couldn’t move at all for 10 days. I lay on my back in bed for some relief, but managed to gain bed sores on both heels, together with losing a fair amount of skin on the bottom of my feet from the pressure of remaining…[Read more]

Hi Tracey

You need to find out what is causing your husband’s leg pain, therefore I would suggest you certainly contact your husband’s consultant or the hospital team dealing with your husband’s treatment to talk through your concerns. Another consideration is to speak to the myeloma nurses here on this site about your husband’s leg pain. If you…[Read more]

Hi Richard

Sorry to hear about you having to start a new treatment, especially with you experiencing so many negative side effects from the drugs. It does bring back vivid memories of my experiences with 4 cycles of CDT. My concentration levels were so poor. I couldn’t even fill out an easy passport renewal document without making mistake after…[Read more]

Hi Helen

It’s good to hear your news that pomalidomide is still working for you and yes, I totally agree with your comments that the longer you can delay treatment then the more chance there might be of new drugs/treatment being available in the future. Although having the flu for five weeks must have been exhausting and difficult for you,…[Read more]

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…[Read more]

Hi Robert

Sorry to hear you also had the flu virus. I hope you recover speedily, although I must admit that it’s taken me a good four weeks to feel my energy levels returning. Hopefully, you will not see your light chains increasing, because you have some time for your immune system to recover before your next appointment in June. However at…[Read more]

Hi Robert
I hope your b12 injections are continuing to work for you.

As expected my light chains increased by over 300 due to the flu virus. Hopefully in the next 8 weeks they might decrease in time for my next hospital visit. I asked my consultant again about measuring my b12 levels, but was told that this was not routinely available when my…[Read more]

Hi Janet
I still wear bed socks throughout the day and during the winter months at night in order to help with my cold feet. My SCT was in 2010. My concentration took around 18 months to resume to almost to normal, with my memory loss taking around two years to recover. I remember trying to pay for some items on my debit card in a shop about…[Read more]