[jmsmythParticipant]

Donna I was shocked and saddened to read about your mum Gill. She was truly a lovely, sympathetic women who was alway supportive. I Loved to read about trips to France and the dogs. I always remember Gill replying to a post on advice for travel advice and she answered “Stephen says he’s not going to wake up in the morning with an acute case of Myeloma “. My deepest sympathy and condolences to your family on the passing of a lovely lady

Love Jean

[jmsmythParticipant]

Hi Helen

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 he asked doctor to wean him Off them as he cant take the side effects any more. He’s right down to 25mg. Will have to wait and see if the pain will be as bad.

Keep well
Jean x

[jmsmythParticipant]

Hope it does work for you Ted. Keep us informed

Jean x

[jmsmythParticipant]

Hi Ted

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 infections. At last meeting with registrar this as brought up and registrar said that blood results didn’t warrant the injections.

Hope you get sorted Ted
Jean

[jmsmythParticipant]

Lorraine

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 excellent group to belong to. I am sure you would benefit from belonging to it. Please let me know

Jean

[jmsmythParticipant]

Hi Jane

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 his PP’s rising. Everyone reacts to chemo differently. Frank wasn’t too bad but if you listen d to him 😁😁. Your hubby very young to get this disease but there are quite a few young ones on here. Jane not sure if you know but there is Face Book forum for MM which is excellent. Have a wee look. Hope husband smoulders a long time. If I can help do get in touch

Jean x

[jmsmythParticipant]

My husband diaganosed with Smouldering Myeloma in 2006. Had SCT IN March 2013. We have BUPA and when diaganosed he spoke to his consultant about going private. She was not in favour of it and he went NHS. They have been brilliant. When he needs scans etc he gets them quite quickly. Couldn’t fault NHS

Jean

[jmsmythParticipant]

Hi Vicki what a lovely surprise. I’m rarely on forum as I’m on the Facebook forum. Pop in occasionally. How are you doing. Really lovely to hear from you. The say Frank is still in remission but he has now developed diverticulitis which is painful. Seeing consultant 25 February and after all this time I’ve a list of questions Vicki I hope you are well and I know you miss Colin really badly. I hope life will be goo to you.
Much love Jean xx

• This reply was modified 8 years, 9 months ago by  jmsmyth.
• This reply was modified 8 years, 9 months ago by  jmsmyth.

[jmsmythParticipant]

Hi annlynn. Going to playa blanca to Volcan. You?

[jmsmythParticipant]

Mag my hubby was diaganosed in 2006 with smouldering myeloma. Had SCT in March 2013 – thank God in remission. The only time we stopped holidaying was during SCT and for 3 months after. We have cruised and holidayed in Europe. We have a yearly policy with All Clear. Only place haven’t been back to is America as insurance is too high. We are also off to Lanzarote on 6 March. My hubby wouldn’t travel without insurance. But I remember an MM sufferer who visited France quite often said “I’m not going to wake up one morning and find I have an acute attack of myeloma”. There are loads of insurance companies to take on MM sufferers. The forum have a list of insurers you could have a look at. We holiday as often as we can. ENJOY – go for it. Need things to look forward to

Hope you get something sorted soon
Jean

[jmsmythParticipant]

Hi Pav

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 symptons. They gVe him Zometa every month to strengthen his bones. Proteins started to rise and in January 2013 and he had a stem cell transport in March 2013 and has been in remission since.

If you are on face book there is a Myeloma support group you can ask to join and there is a mine of information.
Make a list of questions to ask the consultant and if possible take someone in with you as it is difficult to remember all that is said

Hope all goes well

Regards Jean

[jmsmythParticipant]

Laura I’m truly devastated to read your post. The risks were explained to us before my husband had SCT but to be honest I don’t think they registered with me. Although my husband has been in remission for over two years, he said he would never do it again. I’m truly sorry for your loss

Jean xx

[jmsmythParticipant]

Hi Gill

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 can only imagine how you are feeling but wish you all the best. Did you ever go back to France

Lobe Jean
xxxx

[jmsmythParticipant]

Hi Roseanna

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 favourite foods (if it was a meal nurses had to be told that it was home cooked and not fast food.

Hope all goes well with your mum
Best wishes
Jean x

[jmsmythParticipant]

Hi Eve

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 cuts to essential drugs. I hope the decision makers are never in the place that we are

Enjoy your road trips – wish I had your bravery. Take care and enjoy

Love Jean x

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