Hi Brenda,

it’s good news to read you achieved eight years of remission.

After five years of remission, my lambs light chains had increased to 1900, therefore I started VCD in October 2015 with a view to achieving a 90% reduction in light chain levels to be considered for a second stem cell transplant. I was initially on four, three weekly…[Read more]

Hi Maureen

A Happy New Year to both you and Ian. I’m glad Ian’s cough disappeared before Christmas and that you had a good time over the festive season with your son and grandchildren. Like you, I also increased my weight due to all of the chocolates, biscuits and extra food I was eating whilst being off chemo. My son’s were great over Christmas…[Read more]

Hi Avril

I hope you find the information session useful in Norwich, as well as thoroughly enjoying your upcoming holiday with the warmth of the sun. Do you know of any reason for your light chains increasing, i.e. have you had a cold virus or an infection? In the past, my light chains have increased by around 300 following a cold virus and…[Read more]

Hi Dawn

Your pp results have been excellent following your SCT which is great news and long may they continue to remain low. It’s worth asking for regular light chain tests as part of your monitoring process at your regular visit to your consultant in order that you can monitor whether they are remaining at their present level or increasing. Now…[Read more]

Hi Avril

It’s good to hear that you have an excellent relationship with your myeloma team. Hopefully you will not require any further treatment for many years. If you are curious about treatments, I don’t know whether you have attended a myeloma uk information day, but there is always a very interesting and informative part of the day which…[Read more]

Hi Avril

I think the decision as to whether you need further treatment is very much decided by the specialists based on each myeloma patient’s medical history and any current concerns. Various factors appear to be taken into consideration by your consultant in addition to your light chain levels which include: whether your blood test results are…[Read more]

Hi Julie

Unfortunately like others have commented, for some myeloma patients fatigue can be part of the cancer and as a result of the side effects of the treatment. There are some useful tips on coping with fatigue on this site under the downloadable documents as well as information on the myeloma beacon site. I know how your husband feels…[Read more]

Hi Tony

Sounds so similar to our household. Our no 2 son was on crutches last Christmas following an ankle op after messing around during a first team league cricket match with a football and got himself kicked on the ankle without any protection.

Sorry to hear about your stay in hospital, but it’s the best place to be if there is a suspected…[Read more]

Hi Maureen

With a low immunity, you always worry about whether a cough is going to develop into a chest infection. No doubt Ian will be monitoring his temperature over Christmas and at least you will both be able to relax a little with xmas dinner at your son’s house, although you will probably both be exhausted playing with little energetic…[Read more]

Hi Sandra, I know what you mean about being in shock once the consultant mentions further possible treatment, especially when you only have limited time during an appointment and it’s been four years since your last treatment. When my light chains started rising three years ago, I started phoning the myeloma nurse at the clinic before my next…[Read more]

Hi Katy

I’m aged 58 years and currently going through treatment again for my relapsed myeloma. However my first CDT treatment followed by stem cell gave me five years of drug free remission. I think one of the hardest parts of accepting the treatment for your mom is when she is feeling so feel so well. But as others have said above, the…[Read more]

Hi Sandra

Sorry to hear your light chains are rising again. What sort of level were they last time and what level are they now? Presumably you provided a urine test at your last consultant’s visit? Could you phone up after Xmas and ask for your results before you decide about your visit abroad? When I was diagnosed with myeloma in 2010, my…[Read more]

Hello All

Its Vicki Heselton here, Colin’s wife.I just wanted to post in to say that I am so glad you are all doing ok. I think of you all very regularly even though I don’t post here now much. I am trying to make effort in other ways by raising funds to support Myeloma Uk and have a fund raising ball scheduled for April 2016.

I am so glad to…[Read more]

Hi Eve

Hello All, Its Vicki Heselton here. Colin’s wife. The knitting thing looks great but it was never my strength. Eve I can’t believe you are still travelling. You are an absolute star. Hello to all of you I don’t post on here much now but I do think of you all. Tom, Helen, Ali’s Mum, Andy G. I do hope you are all doing well. I am doing a…[Read more]

Hi Helen

You are awake late this evening? It’s good to hear from you, but I’m so sorry to hear your light chains are increasing which must be so concerning for you. What are your current numbers? Can your current medication be increased or modified? I see panobinostat has just been approved by NICE to be used with velcade and dex for patients…[Read more]

Hi Helen

You are awake late this evening? It’s good to hear from you, but I’m so sorry to hear your light chains are increasing which must be so concerning for you. What are your current numbers? Can your current medication be increased or modified? I see panobinostat has just been approved by NICE to be used with velcade and dex for patients…[Read more]

Hi Maureen

I’ve just lost my last three attempts at replying to your post and my computer is jamming again as I write. I am so happy that you are leading a more normal life now that Ian is in remission with his myeloma. You must be relieved he is only having to see his consultant every eight weeks and that his myeloma levels are holding well.…[Read more]

Hi Helen

That’s great news about your son managing to obtain a job with apple. I hope he enjoys the work and can also enjoy some music work during evenings/weekends to keep his interest and motivation going to eventually find a career in the music industry. He should be able to help you with your problems accessing the internet. I swopped my…[Read more]

Hi Andy

It’s so good to hear that you are now fit enough to be back on Pomalidamide and that you are making an good steady recovery after your exhausting intensive care treatment in hospital. I can’t imagine just how tough and worrying it must have been for you and your family over the last month. I hope the tough physio treatment manages to…[Read more]

Hi

I hope your father’s treatment is going Ok with VDC. I started my first relapse treatment of VDC about the same time as your dad. I have experienced a range of various side effects, but fortunately have not experienced a headache.

Both the Velcade and/or the dex might be responsible for his headaches. If you look on the Myeloma Beacon…[Read more]