I’m very rarely on the forum these days. Just popped in and saw your post. So glad to read that you are doing well. Have you been able to get away anywhere. Hope you go from strength to strength

Mavis glad to read your remission is still strong. Frank is on pregablin for the aftermath pain of shingles. He’s been on them over 2 years but…[Read more]

Jean x

I don’t know about adults but one of my sons, when a baby, had one chest infection after another. Things where really bad – they test d him for cystic fibrosis (thank God – negative). They suggested hemaglobin injections. He had them and it was great for him. My hubby is 3 year remission and recently he has had quite a few chest…[Read more]

Are you on FB. I asked and got replys – you can do a search for UK Myeloma Support Group on Face Book. Michelle posted “What problems is she having Jean? I’ve accepted all the joining requests over the past few days?” Someone else suggested that you ask Ellen Watters who is in Myekoma UK. If you still can’t get on let me know. It is an…[Read more]

Sorry if I’ve mislead you. Frank smouldered for nearly 7 years and proteins where rising – very slowly – consultant decided to do SCT. In retrospect we think she did it a bit quickly because of his age. In Northern Ireland cutoff for SCT is 70. She started him on CDT. Chemo, Dexter and thalidomide. How long has hubby been smouldering? Is…[Read more]

Jean

Don’t know if I will be of any help. Myeloma is a very I dividuL disease. My husband, like yourself, a routine blood blood test and something showed up and doctor sent him to haematologist. They did a bone marrow test and told him that it showed myeloma but he was smouldering. That was in 2006 and up until 2013 he was still not showing…[Read more]

Jean xx

So lovely to hear from you. It is hard to believe it’s been 3 years since Stephen died. I always read your posts and especially about France. One thing has stayed in my memory – the thread was travel insurance – and part of your post was ……. And Stephen said “I’m not going to wake up in the morning with a severe case of Myeloma ”

I…[Read more]

I think it depends on the hospital. When my hubby was in for SCt, for about 1 week I was the only one allowed to visit him. Before I went into his room I had to go into an anti room and put on a gown and gloves. Every time I left his room I had to go through the same thing. He didn’t and at times couldn’t eat, so,I brought in his…[Read more]

I also am on site very rarely but Was great to read your post. Enjoy our scrabble. Eve I’m sorry to have to tell you but JoJo passed away on 15 February. We kept in touch and her daughter Paula emailed Tom and myself to say she died of heart failure. She was such a lovely woman and I do miss our “chats”. This damn disease – and now the…[Read more]

I haven’t been on forum for some time. I am devastated to hear of the passing of Colin. My thoughts and love are with you at this very sad time.

Love jean xxxxxxxx

My husband was diagnosed in 2006. He smouldered until 2012 and had SCT. When he was diaganosed I contacted Myeloma UK and they sent me a diary. Over the 9 years it has been invaluable to us. It has different areas – what treatment in – what questions to ask etc. the part I use most is blood results page. It tell you what the normal…[Read more]

Jean

Jean

Great to hear from you. Sorry to hear Velcade didn’t work for Colin. Not on here very often so when I got your post I looked back to see how Colin was doing. He’s had had a rough time and he’s thinking OF GOING BACK TO WORK!!!!! I hope the new treatment works. Blo*dy disease.

Frank has his up and down days. We both took chest…[Read more]

My husband had shingles last year (1 year after SCT) it was bery painful and he still gets some pain. Consultant prescribes aciclivoir anti virol and pregabalin for pain. He has been on them for over 1 year and consultant in No hurry to take him off them. Frank is 72 and he got a letter from GP to get the shingles. He checked with…[Read more]

Just caught up with your post. I’m so happy for you it’s wonderful news. Know you have had hard times – so keep up the good work

I’m not on the site much but came across your post. My husband was diagnosed September 2006. I went to pieces .- I cried most of the time but I was referred to a therapist. It took time but I eventually it helped me. Frank had a STC transplant in March 2013. It’s not been easy but he is in remission (thank God) and we try to live each…[Read more]

I’m so sorry to read of the passing of your husband Chris. I know your children and family will be of great comfort to you and to help you at this terrible time. Such a lovely picture of your husband – the Glens of Antrim, know it well

God bless you and your lovely family

Jean x

When Frank applied for policy, he had to answer loads of questions. One they kept harping about was “are you on very strong pain killers”. He asked what they called strong. They never had an answer for that and as Frank was only taking paracetamol – they accepted that. He got the yearly policy and when they sent the renewal policy it had…[Read more]

My husband has been in remission for over 2 years. We love cruising and we got the best deal from All Clear – a yearly policy. When we asked about cruising in the Caribbean – I can’t remember what it cost but I know it was astronomical – so we stay with in Europe. Hope someone comes along and can give you more info

Best wishes
Jean

Move over Sir Bob. I really enjoyed that. Real good feel video. All looked if they were enjoying it.

Great well done
Jean x

P.s the drummer was brilliant

Jean

Keep in touch
Love Jean x

Has Colin started the treatment yet? Frank got lots of cells but consultant put them all back as she said that he’s too old to have a second transplant. I still think that consultant went ahead with transplant – PP’s had been dropping for months and as his next birthday would be 70 – the cut off point – she went ahead.

Vikki Frank…[Read more]

Like yourself I’m not often on the forum. Looked in a few weeks ago and saw Maureen’s post and also wondered how Colin was doing. I’m sorry to hear that he’s having a hard time. Those bloody shingles are awful. Frank had them a few months ago and Dr put him on pregablim. Has Colin been taking them. Frank can’t get off them as he has…[Read more]

I email the nurses – Ellen or Maggie. Email address for both is askthenurse@myeloma.org.uk. I email as then I have a written response that I can refer back to. They are excellent and reply quite quickly

Jean

My husband Frank was diagnosed with smouldering myeloma in September 2006. He had all the usual. BMB, scans etc. the only treatment he had was Zometa, bone strengthening infusions. Last year in April my husband was turning 70. Although his blood results were good and felt ok his consultant decided to do a SCT. He went through this in…[Read more]

Jean xx

Not sure about Tom posting on forum (not on much myself) but he’s been posting on Facebook. I know he had bloods taken last week and sees consultant on Thursday. Will post on Facebook that you are asking for him. Hope things are good for you
Jean x

Frank went through SCT in March 2013. On leaving the hospital he was told he would have to have “the baby” injections, right from the start. Within a couple of days,the consultant sent him an email with a schedule of all the vaccinations he needed – with dates etc. A copy qhad also been sent to his GP – who contacted him when they…[Read more]

Sorry you had to join the forum but as said before you are in the right place for advice, info and friendship. My husband was diagnosed in September 2006 with smouldering myeloma. Like you it was discovered by chance. We had 7 years with only treatment being
Zometa infusion to strengthen bones. He had this for about 18 months then went…[Read more]

Long long May tour remission continue. My husband smouldered from 2006 and had SCT March 2013. We were at co sultNt today said his protein was not dectable all bloods were god and to go away as he could not find anything wrong with him. Frank doesn’t come onto the site but when I read your response to Rebecca about drinking g the water…[Read more]