[jmsmythParticipant]

Hi Vicki

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 terrible withdrawal symptoms. What is the next step for Colin? Ian Colin and Frank were roughly round the same time so although not often on forum Colin and Ian are in my thoughts. Hope things go well for him

Take care
Love Jean x

[jmsmythParticipant]

Hi Sue

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

[jmsmythParticipant]

Done

Jean

• This reply was modified 10 years, 1 month ago by  jmsmyth.

[jmsmythParticipant]

Hi all

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 March and although it took some time he is doing ok. In retrospect we both think that the SCT was carried out because of his age. Here in Northern Ireland they don’t do SCT after 70 and the consultant thought it would be the best road to go down. I hope you all smoulder for many many years and live life to the full. After 8 years we are still doing it and pray that there are more years ahead

Best wishes to you all
Jean

[jmsmythParticipant]

Jeff Frank takes the tablets twice a day and they are 75mg. He had horrendous pain from and after the shingles. He said he felt like a gorilla was crushing every bone in his body. Once he started the tablets he felt a lot better but still gets some pain but not as bad as what it was. Consultant said months ago he could have this pain for some time (pain coming from nerve endings). I hope you get it sorted and let me know how you get on as Frank is determined to try and get of his

Regards
Jean

[jmsmythParticipant]

Jeff not sure if this is related. My husband was prescribed Pregabalin for pain after a bout of shingles. His consultant told him not to stop them unless he discussed it with her. She said he would have to be weaned off them. He got up yesterday and felt terrible (he’s been feeling good for some time). He said he was feeling so weird and no energy. Then he remembered that he had not taken the tablets the night before. He took it went to bed for a few hours and was feeling great when he got up. He said he was going to discuss coming off them at next appointment. Maybe bot a good idea

Hope you feel better soon
Jean

[jmsmythParticipant]

Eve so shocked to hear of Slims passing. My thoughts are with you and your family at this sad time. You were Slim’s rock and I’m sure he was glad that he had you in his corner. My love to you all

Jean xx

[jmsmythParticipant]

Hi David

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

[jmsmythParticipant]

Hi Rebecca

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 were due. The only one outstanding is pneumonia – he had one about 7 years ago and was told that he only needed it every ten years. Apparently that has been changed and has to be done every 5 years. Hope you get sorted
Jean

[jmsmythParticipant]

Hi Dawn

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 on to 2 monthly visit. Frank had cell transplant in March 2013. He attends hospital every 4 weeks as consultant wants him to,have Zometa again. There is no detectable protein.

I know it is difficult at the beginning to get your head round it. I wanted to know all about Myeloma but Frank didn’t. The only time it was mentioned was before a hospital visit. We lived and holidayed right up to treatment starting and then continued after recovery from SCT. One thing I found a great help was a Myeloma diary. It is available free from the forum. It has different sections and an area to record blood readings. So at a glance you can see what is going on.

Ted, a member of the forum has been smouldering now for nearly 8 years – I think and as far as I know he is not on treatment.

Hope you smoulder for many many years
Jean

[jmsmythParticipant]

Damn predictive txt. Should read I’m there for Frank when he needs me

[jmsmythParticipant]

Mike damn predictive text. My spelling isn’t as bad as above
Jean

[jmsmythParticipant]

Hi Mike

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 and the diet he thought it was a reflection of his thoughts and it mad him laugh. They say laughter is the best medicine. Hope you go from strength to strength to strength

Jean

[jmsmythParticipant]

Hi Fiona

I also hate the word carer. I’m not there for Frank when he needs me, just like he’s there when I need him and I certainly do NOT consider him as my carer. I agree “family” might be. Better option

Best wishes
Jean

[jmsmythParticipant]

Hi Eve

What a terrible time you both have had and I’m so glad to read that he is doing well. Slim is a real fighter and I know you don’t like it said but I’ll say it anyway “he’s lucky to have a feisty woman rooting for him”. Hope he improves quickly so he can continue with treatment at the Marsden, they seem to know what they Re doing

Know what you mean about not posting. We went away for two weeks and I promised not to go on site while away. We are back a week and I have just come on today. Seems I have a lot of catching up to do.

My very best wishes to Slim and take care of yourself Eve as well

Jean x

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