[jmsmythParticipant]

Babs

Andy from web tea, may be able to help you. I did it on my iPad. In profile new picture was there but on posts the old one was there. So I went on my lap top and did it there. It worked. I asked Andy and he gave me help but for the life of me I can't remember. If it doesn't work email the webtea. – Andy he will help

Jean x

[jmsmythParticipant]

Hi Chrissie

Read your first post and meant to come on and welcome you – but went out of my head. So welcome to a great bunch of people who will be there for you. My husband smouldered for 7 years before treatment. I was so glad to read you attitude – well done you 🙂

Take care
Love Jean

[jmsmythParticipant]

Hi Angela

My husband had SCT in March this year. His consultant told him that he would have to have all vaccinations (childhood ones) again. She led us to believe that with the SCT it took his protection away. He started them about 4 weeks ago (including flue) and from what I gather they will go on for two years. Maybe like everything else – different consultants- different ideas. Just thought I would mention it

Love Jean x

[jmsmythParticipant]

Thanks for that Tom – you do me the world of good. So Franks ok with the Gin – good one 😀 he woke up with a damn cold this morning.

Take care
Love Jean x

[jmsmythParticipant]

Thanks Megan that really helps. It was really bothering me when it read about people on maintenance therapy. Now it makes sense. Frank started Zometa again on Wednesday. His consultant stopped it as phosphates/potassium was quiet low. She is now on long term sick leave and her replacement – I don't have much confidence in him – said he could have it again. Frank fell asleep on sofa about 8 tonight. I tried to wake him but he snored at me 🙁 . He will probably come to bed about 4 and read for hours !!!

Hope Phil gets his strength back soon. Tom (the elder) sorry tom if you read this, but he gives me hope that things will start to get better for Frank soon. Frank is a gin drinker but I'm trying to get him to change to vodka – it seems to do Tom the world of good

Thanks again Megan for info – can relax a bit – till the next problem comes along

Keep well
Love Jean x

[jmsmythParticipant]

Hi all

I'm so interested in this maintenance after SCT. Frank had his SCT beginning of March. He was diagnosed 2006 and smouldered for 6 years. Maintenance has never been mentioned to him – is this an age thing? In 2006 he had a BMB and has none since. I read on forum about people having BMB regularly. In 8 months since the SCT he reckons he felt better befor he had it. He just seems so tired all the time. Would appreciate any info

Jean x

[jmsmythParticipant]

Hi Scott

Frank and I have had flu jabs every year for the past 7 years (since Frank was diagnosed) and thank God meither of us has had any side affects. Frank had SCT in March and flu jab September and all ok.

Best wishes
Jean

[jmsmythParticipant]

Hi Maureen glad everything went well wish Ian a speedy recovery

Love Jean x

[jmsmythParticipant]

Thanks Gill. My iPad doesn't support java and it needed it to view. Got it on lap top. Rey funny. Thanks

Jean x

[jmsmythParticipant]

Hi Gill link won't work on my iPad. Try on lap top

Jean

[jmsmythParticipant]

Gill I'm so glad that you did the trip and got home safe, but I'm like the others your trip was like "inspector Clueso" and I did have a laugh although I admire you, it probably wasn't fun at the the time but as you wrote it a sense of humour showed itself. I'm not sure I could do it. But good on you 😀
Love Jean x

[jmsmythParticipant]

Hi eve

I have at long lost the plot (3 year old grand daughter is going to buy me a new pink plot) Frank said it's not the potassium but the phosphates that are low. On notes from last 2 weeks doctor said low phosphate and yesterday sai the potassium is still low. Oh boy will have to find out but which ever one it is Frank cat get the Zometa

2 weeks ago bloods were hb 135. Wcc 4.4' Pl 144, neutrophils 2.3 everything else was ok
Yesterday Hb 136, Wcc 3.6, Pl 135 neutrophils 1.6 registrar said potassium was .58 maybe she meant phosphates. I Cahill hVe to wait another two weeks to find out what the hell they mean

My very best to Slim Nd you
Love Jean

[jmsmythParticipant]

Hi Rosie

Frank is with Dr Drake at BCH. Unfortunately she is on long term sick leave so we see registrars. There is a replacement for her but ……….:-P .

Rosie cancer focus every now and then have support groups. I registered with them and they send me info and what the group will be talking about. Haven't been to one as I can't get Frank to go. He wants to forget about MM as long as he can and brings it to his mind on hospital days. (At least that's what he tells me) your husband is so young to have this horrible disease. Oh boy you really have your hands full. I'm one of 7 children and have 4 of my own and it's only now I appreciate what my poor mum went through and you with 8 – you must be exhausted. Hope you are getting lots of support. Lenard something new every day – thought all Mm was dealt with at BCH. Did you see Michael Quinn at info day!? He's very approachable. Mary DrKe was supposed to be there but as she is sick …….

Rosie hope things start to improve for your husband
Take care of yourself
Love Jean

[jmsmythParticipant]

Hi Rosie

Sorry you had to join us but welcome. As Mavis says you have an awful lot on your plate. They are a great bunch here and will help you as much as they can. It's a great place to have a moan Nd a good old rant. My husband was diagnose 2006 and smouldered till March this year when he had a SCT. I noticed you said you were at an info day in N Ireland. Does you husband BCH?

Rosie I wish you bot well
Live Jean

[jmsmythParticipant]

Hi Vicki and Colin

Yes that was the cruise. We did enjoy cruise but felt it was too early and too long. Think Frank thought he was on the up but soon found out he wasn't.

Was only today that he said he felt a bit stronger

Hope Colin you are doing well
Love Jean xx

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