Hi Jan
Apologies as above- life has been a bit hectic! I’ve a list of knitwear to complete now – having had so much time off with sheer fatigue. We are now in the throes of getting our holiday house sorted- it’s going to be a very long task I think! It’s great now but needs rewiring so that’s going to be very messy! Still as we are both retired…[Read more]

Hi Andy
Can’t believe how long it is since I put anything on here! Apologies for the delay- though have spent 5 weeks with flu and a week in Italy and a dreadful few days having a colonoscopy! However all over now and am on cycle 7 of pomalidomide – light chains have plateaued and bloods holding up despite infection – fingers crossed this is…[Read more]

Hi Vikki
It’s all a worry for you, I’m just hoping the revlimid does the trick- I’ve had to have a few months of gcsf to keep my bone marrow up – it seem to have worked and my bloods are low but ok still – I will keep my fingers crossed that Colin has a similar result
Love Helen

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]

Hi, I know exactly how your husband feels about not being interested in food. I weighed about 11 stone prior to being diagnosed with myeloma in 2010, but the weight just fell off whilst I was going through chemotherapy and following a SCT, with my weight reduced to 6 stone. My body looked a mess and finding clothes to fit was difficult. Most…[Read more]

Hi David,

I hope your new treatment works well. I’ve read such good reports on the Myeloma Beacon site about Daratumumab. My consultant in Birmingham is also quite excited about this new drug, which is supposed to have a good response rate and well tolerated, but only available in the UK on the clinical trial which you are undertaking. If you…[Read more]

Hi Robert

I can really understand why you are so pleased with your blood test results. Your drop in paraprotein level is excellent. Fingers crossed, your next results will be just as good. The B12 injections have certainly managed to raise your B12 levels. Are further injections going to be necessary to maintain your B12 levels, or was the…[Read more]

My condolences to your family.

As many have said on here,Scott always seemed to be beating the odds,I remember him talking about SCT although kidney functions were not great.

He gave lots of people hope and this is what this site is about,hope for a cure plus watching people who seem to be full of hope and beating the odds,Scott is one of many…[Read more]

I’m so sorry to hear your news about your dad. He always sounded so positive about life and his treatment. My condolences to you and your family.
Jan W

Hi Helen

I always used to rely on my relatives for my knitwear, but unfortunately they all had to give up knitting due to arthritis in their thumbs and the weight of a garment just made the pain worse. I’ve tried to learn how to knit on many occasions over the years, but with no success.

My light chains are still going up and down, with the…[Read more]

I’ve been on multi B vitamin tablets for the last four years. Haven’t a clue whether it makes any difference. I also read the report on myeloma patients with lack of B12.

Jan

Hi Jan
I’m hoping so too, I have to speak to the transplant team again to see what they think, there are new drugs coming along but you are right , they take a very long time to get into common usage.
The moving and everything is an effort to have a bolt hole if I can’t go far away, and to find something much smaller in town. Though these things…[Read more]

Hi Helen

You certainly keep yourself busy with the wedding and now a holiday cottage, together with a house move. I’m exhausted just thinking about all of the work involved! At least the holidays should be relaxing.

That’s great news about Pomalidomide working for you, with your light chains reducing well and your neuts looking a lot…[Read more]

I was shocked to hear of your dads passing. My deepest sympathy to your family

Jean

We also have the Braun ear thermometer. My DIL brought a wand thermometer – doesn’t touch the skin – just wave it across the forehead. She said it’s brilliant

Jean

Hi Vikki
I’m ok, been ‘off’ the drugs this last few days, and it’s been rough but I’m close to normal again today, hopefully it just continues to work… what options did the specialist nurse talk about for Colin? Or was she just generalising?
You are right about positive attitudes, it does keep you going.
Love Helen

Hi Andy
I’ve been having a few of those dex mornings myself recently! Have been up around 6 am half of this week! But not this weekend, I’ve felt quite grim really, I can’t work out if the Pomalidomide is cumulative in its toxicity or I’m just sickening for something else… No doubt time will tell. Anyway the drugs seem to be relatively ok and…[Read more]

Hi Maureen
We had a lovely day thanks. Ian isn’t having much luck with these drugs at the minute, when do they plan to start dtpace? I’m finding the Pomalidomide unpleasant but bearable … Igo tomorrow to see what the bloods are like… So fingers crossed it’s still working!
Love Helen