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…[Read more]

Hi Maureen,

Hope your trip to Copenhagen went well. My son quickly recovered from his tonsillitis op with only a minor scare with some bleeding when the scabs started to come off. You tend to forget how quickly you recover when you are younger. He managed to sell his England football tickets within hours on the B’ham City football site and…[Read more]

Hi, Since being diagnosed with myeloma 2010 following three collapsed vertebrae, I find that I suffer with terrific pain in the top part of my shoulders and back. I’m on pain patches and tablets to help. But, I did find the shoulder pain greatly intensified when I was sitting around in a chair for hours, or propped up in bed whilst recovering for…[Read more]

Hi jaylo, I reread your first post and realised you are new to myeloma. Sorry to have to welcome you here, it’s a place that we don’t want to be! You must have noticed that there is a wealth of experience here and everyone is willing to help. You may find that there is also a myeloma support group in your area, worth giving Myeloma UK a call. Hope…[Read more]

Hi jaylo, I think that if I was in your shoes I would ask your GP to refer you to the haematology department, I would much prefer to be under the care of a consultant than a GP. Nothing against GP’s mine is a treasure but if anything goes wrong you have immediate access to the treatments available, plus, the consultants and the specialist nurses…[Read more]

Hope it does work for you Ted. Keep us informed

Jean x

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…[Read more]

I haven’t had a holiday abroad so can’t advise re travel insurers but will ask the specialist nurse who told me she had a few who had been recommended by other patients.
I wanted to book China now I am in remission (SCT end August 15) but Consultant said not to go anywhere there wasn’t a really good health care system and ideally stay in Europe. I…[Read more]

Hi, I know how you are feeling with the peripheral neuropathy. It’s definitely diccult to cope with. I began to have slight tingling in my feet after the first week of Velcade, which gradually got worse by the end of cycle one. The volume of my Velcade was reduced in cycles 2 to 6, but the tingling changed to numbness and pain in my lower legs.…[Read more]

Can’t help with work issues but if worse comes and you need to claim for ESA you should be put in the Support Group and that means you will be entitled to the higher amount with a review every 2 years. It’s still pants but at least it’s better than a lot of others.

Sorry to hear that you have joined us Bridget, but this is such a good place to come to for support and empathy. There is also a Facebook support group “UK Myeloma Support Group”.

The Myeloma UK helpline is really good, give them a ring if you feel you need to clarify anything you have been told.

Good luck with the Chemo and let us know how you…[Read more]

They didn’t talk to me about percentages, just said when I had completed 6 -8 cycles of chemo.

If you have a Nurse Specialist perhaps ask them although the previous answer is very clear.

Kind regards

Karen

Hi, I do hope you went straight back to the hospital for advice, particularly with a spiking temp. I haven’t been on for a few days so know this reply is a bit late.

When I was 6 weeks post SCT I got a  cold sore which prompted them into action, bloods checked, acyclovir prescribed etc. So I guess act quickly on any concerns re health is…[Read more]

Well, I am now 6 months  post SCT, no meds, monthly appts for Zometa and 3 monthly appts for monitoring. Feels very strange not to have two or three appts a week but good to feel well. I still have days when I feel very fatigued if I have overdone it the day before but this gets less as time goes on. I am finding it hard to lose the post SCT…[Read more]

Hi Maureen

Hope all your bags are packed and ready for your wonderful break in Copenhagen. Our youngest son is at home following his tonsillitis operation last Friday. He is coping well, but apparently the time for infections or bleeding is five to seven days after the operation. After much discussion, he has only just reluctantly accepted that…[Read more]

Hi Stanley, good to know things are going well, know what you mean about colds, my daughter picked up a cold from school and it’s hit me really viciously. The system here in Germany is that I have to see my GP first for initial treatment and then go to the consultant if it gets really bad. So far just feeling washed out, my GP phas prescribed…[Read more]

Hi Maureen

To be able to celebrate Ian’s 60th birthday in style with friends and family, must be so rewarding and enjoyable, especially after his recent set of good blood test results. Long may his remission continue, particularly after his tough time during treatment. I hope you both have a wonderful time in Copenhagen, as well as your holiday…[Read more]

Hi Les,

I’m so glad that your time in hospital went smoothly, if probably slowly due to your boredom. It’s such a good feeling when you come out of your isolation room and go home to your own house/bed.

You ask what comes next. You should have a follow up hospital appointment to see a doctor quite soon, which will monitor your latest blood…[Read more]

I would have thought blood tests for paraprotien and free light chain levels and a urine test for Bence Jones protiens too.

Kind regards Karen

I would like copies of my Bone Marrow Biopsy reports. Some time ago now I asked what the results were and the Doctor looked at me like “Duh” and said “you have Myeloma”. Well I knew that!!!! I was already on VTD chemo but I know the BMB tells them a lot more. Perhaps I should ask for copies of the reports. I have had two BMB’s, one when the…[Read more]