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]

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]

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]

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 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]

Hi,

So sorry to hear about your Mom, but as you say she was very fortunate not to suffer with any myeloma symptoms or bone pain and was able to continue with her daily life at home for a great period of nine years.

I don’t envy you having to clear your mom’s property with all of her personal effects. It’s such an emotional and stressful time…[Read more]

Hi,

Good to read that you are feeling OK after your sct. You are doing well to have the energy and fitness to be playing golf. I think it took me a good six months after my sct before I had sufficient energy to go out. Hopefully your peripheral neuropathy will get better with time. With my present sixth cycles of VCD treatment, I’ve been…[Read more]

Hi,

It’s a tough decision when it’s your grandson. I suppose it depends on whether you think he still has the actual cold virus and whether he is still coughing and sneezing with possible spread of the virus. Since being diagnosed with myeloma, my immunity levels are low and I tend to easily catch a cold virus. I also know it now takes me six…[Read more]

Hi,

My first investigations, CDT and stem cell transplant in 2010 were all financed via my husband’s employment medical insurance with Aviva. Because we knew little about cancer treatment, I think the restrictions on the policy had gone unnoticed by us until I was starting the different parts of the treatment. The Aviva policy restricted the…[Read more]

Hi Andy,

It’s good to hear that you are OK and managing with your current drug regime. Long may the drugs continue to work for you. I’ve missed reading your updates. Every time I caught a cold virus and also with the shingles virus, my light chains would rise by around 300, but after recovering from the virus the light chains would never drop…[Read more]

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…[Read more]

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…[Read more]

Hi, I was only 52 years old when I found out that I had myeloma. It’s such a shock to be diagnosed with any form of cancer, but especially one which cannot be cured and requires ongoing treatment. Your sister will most likely need some time to adjust to the whole situation. She will be thinking about so many different factors, which is daunting…[Read more]

Hi, I think it’s normal to be apprehensive about your sct. I found myself quite emotional the week prior to my sct in 2010, mainly due to my concerns as to whether I would be able to cope with the whole process, especially the isolation and the side effects of the treatment. I found the staff and care on the Heartland’s sct ward were excellent.…[Read more]

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

Hi, Just thought I would wish you all the best for your transplant at the QE Birmingham next week. I hope all goes well and the treatment gives you a good period of remission. I had my first sct at Heartlands hospital in 2010 aged 53 years, which gave me a good five years of remission. I changed to the QE hospital in 2012 and started relapse…[Read more]