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]

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]

Hi,

I wondered whether your husband is also taking an antibiotic with his pomalidamide? I ask because
I’ve just started on my first relapse treatment of VCD and during the end of the first two weeks I developed a full pin head body rash, with an angry red skin and raised temperature. I felt as though I was burning up from inside and ended up…[Read more]

Hi Maureen

I think it’s a great decision for you both to go away for a few days in Harrogate and just enjoy yourselves, especially with the weather still being quite mild. Relaxing on holiday is such a good way to unwind, relax and forget about myeloma concerns.

The first Velcade cycle was eventful. The nausea medication is excellent, which…[Read more]

Hi Andy

You have certainly had an extremely tough battle to fight over the last few weeks dealing with both pneumonia and sepsis. Do you know what caused the sepsis? I can’t imagine how poorly you have been whilst undergoing intensive care treatment. Both you and your family must be so relieved that you are now on the road to recovery. Take it…[Read more]

Hi Helen

On Monday I started the first day of my cycle with the cyclophosphamide tablets and Velcade injection. It must be such a shock for our bodies to take so many different types of tablets. The nausea tablets appear to be working during the day, but not the evening. I took the drugs about an hour before taking the cyclophosphamide tablets,…[Read more]