Hi Jan
I’m not too good at responding these days! Out of signal predominantly.
Glad to hear the velcade is working- I had to have the reduced dose as it affected my legs quite badly but it did give me a few tolerable months.
When do you anticipate having the next transplant? And I think I’d better do as Mavis asks and start a new post, this one…[Read more]

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

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…[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 Sandie

Time to grieve is not something that we decide,it’s not something that you can just decide to do,it comes in so many different forms,to me it’s a bit of an ambush,one minute ok next the tears slip down my cheeks.

The house to you has been important ,but it’s not your love or your memories,just 4 walls and a roof,your love of your mum…[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]

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]