Hello Jean
Phosphate is a tricky drug, I think you should speak to the consultant about it? Gastro problems are linked with it but if they think he needs it they may have to think of another way….. Lots of salmon and nuts? They are high in phosphates. How is frank otherwise, any less tired?
Are you all sorted for Christmas yet?
Love Helen

Hi Frances

My husband had STC IN March this year and turnd 70 in April. Consultant told us that they don’t usually do SCT at 70 but she said that Frank was fit and healthy (!!!!!). He had heart and lung tests and all was ok. I think it depends on your fitness. There are quiet a few people on the forum who decided against SCT and are doing ok. I…[Read more]

Hi Vicki

Frank is a bit like Colin. Last week he was up and down. Every day was different. One day he cleaned all the windows inside with no problem. Next day he was knackered. This week he’s been great. Two nights in a row we have been out for dinner with friends and tonight with family and on both nights we went to the theatre !!!! He’s…[Read more]

My husband is 70 and had SCT March and is coming along. His consultant made his day when she toOld him he looked like he was mid 50’s lol

Hope things improve
Jean x

Hi Tom,
Sorry to hear that… But 4 years is a good innings and just think of the nice guy I meet sometimes in clinic: he got a 7 year remission and then a 10 year remission next time around. So maybe you’ll beat 4 next time – I dare you to!
Good luck with the BMB,
Helen

Welcome to Nick and all those of you I haven’t yet ‘met’ before!
Sorry you’re joining us but you’re not alone – there are a whole bunch of us here living this weird existence, although some like me only write from time to time. I had treatment last year and have enjoyed a good year this year in remission.
Helen

Hi Maureen,

It was great to read that Ian got home, even if a little later than planned. I hope he’s doing well now and even if the weather isn’t so favourable you’re finding plenty of things indoors to keep you occupied!!

take care and enjoy the run up to Christmas,

Helen

Dear all, and especially Dai’s family,

I’m very late to add my condolences. I think in some way I didn’t really want to believe it was true, and like others have said it was such a shock when I read the sad news: Dai was such an institution on here. Since that’s how it came across even in messages on a forum and never having met him, I can only…[Read more]

Hi Chris

Glad that things are going good for you. Frank had SCT In March and like you he’s going through th re-vacation. He’s had second lot and brought a lot of material to read about the vacations. We did laugh as all the points started “if your child shows ..,,..” He’s 70 so we don’t know what a 70 year old would experience!!!!!!

Hope…[Read more]

Hi Maureen

I have been taking Manuku honey for about 5 years and haven’t had as much as a cold. Hope I Hevesy spoke too soon. Frank won’t take it as he says it’s too sweet. Hope Ian is improving

Jean

Hi Luciano

Sorry you have been diagnosed with smouldering MM. My husband was diagnosed with smouldering in 2006. He had STC In March this year. He is improving a little every day and in September we went on a 16 day cruise round the Med. When he was smouldering we made the best of things and went travelling quite a lot. When Frank was…[Read more]

Thanks Andy for passing on the post. I too was emembering Dai yesterday and thinking Bout his family. He kept popping into my head the oddest of times. His sister Angie posted a link to song on Facebook that was composed by a friend of Dai. If you get a chance listen to,it it is beautiful. He will be sorely missed but his memory and spirit will…[Read more]

Hi Scott

Yes, I’m still taking my daily curcumin and I still believe it’s helped me over the past three years of remission. After a bad cold and chest infection last Christmas, my light chains appear to have increased at a much steadier rate over the last year. Although that was my only cold for three years, with no other infections, which is…[Read more]

Hi Tom

I’m so sorry to hear your sad news. It must be such a shock, disappointment and big concern about what the next round of treatment will bring. Fortunately, there appears to be quite a few treatment options available for first remission including some clinical trials, Velcade and the possibility of a second SCT. Apparently the results of…[Read more]

Dear Tom
What a blow for you, but you are right you just have to get on with it! I finished 8 rounds of Velcade in November, my feet are a bit numb still but improving every day. Energy levels not brilliant but…. I go back to work in January and my light chains are down to 7. It is all unpleasant but doable. So my friend its onwards and upwards…[Read more]

Hi Everyone

Nice to see everyone getting in the Christmas spirit,we have already started eating the Christmas goodies,so might have to buy some more

I am still looking for some of the Christmas decorations???,I think Slim has hidden them away!!

He has a weekly visit for bloods,plus if he needs platelets or bloods another visit,a visit for BMB…[Read more]

Hi Tom

I can tell you lots of hospitals do not do Pet scans ,Babs told me the reason why is the amount of rays it has to use,this explains why Slims consultant is against Pet scans,he says it will not tell you what is going on in the Bone Marrow,but when you have no firm readings for PP or light chains,it’s a long time to wait between BMB,Slims…[Read more]

Hi Carol

I can only tell you Franks experience. SCT was decided but before he was given date for procedure he had to go through quite a lot of tests and heart and lungs were two of them. Has your consultant not mentioned it. Maybe on younger people they don’t carry out the tests. Mind be worthwhile to mention to consultant. Hope all goes…[Read more]