I would certainly mention your pains and aches to your specialist. My myeloma was diagnosed in March 2010. For approximately 9 months prior to the diagnosis, I would experience some strange aches pains in my hip, under my rib cage, around my kidneys and in my back. The pains would come and go. I just thought that I had strained certain parts…[Read more]

Hi Vicki

I know it’s really worrying and stressful when you see light chain numbers increasing. However, hopefully it’s just a blip due to Colin’s recent virus on his holiday. My light chains usually increase by 200 following a cold virus, but six weeks later they drop again sometimes back to their original number and sometimes just slightly…[Read more]

Hi,

Like others, I remember it well losing my taste during CDT and it took about three months after chemotherapy before my taste buds eventually returned to their usual levels.

My mother suffered from permanent loss of sense of smell and taste after a severe cold for over twenty years! She tried various remedies, joined discussion forums and…[Read more]

Hi Lois

I think it’s a great idea about providing a book with hints and tips on living with myeloma. I don’t know how you are going to organise so many different comments from all of us, but perhaps you might consider placing the suggestions under various headings such as coping with myeloma, first line treatment, stem cell transplants,…[Read more]

Hi Helen

I think you have coped so well continuing to work whilst going through a second round of treatment, especially with the various side effects which you have suffered. It must be so difficult balancing your work, family and myeloma treatment. Hopefully occupational health will come up with a good retirement package for you to consider…[Read more]

Hi Helen

I’m really sorry to read that you have relapsed. Have your light chains jumped considerably, or are they slowly climbing upwards? You must be so worried and anxious about starting another treatment. It’s such a shame that you couldn’t have a longer period of remission for your body to recover before you start more drugs. Do you think…[Read more]

Hi Frances,

Like others have posted, I also started on my myeloma journey with odd pains in various parts of my body, which accumulated into spasms in my back which I suffered for some weeks even with strong painkillers. During this period, I was being investigated for possible causes of the pain and underwent x rays, ct scans, and ultra sound…[Read more]

Hi Jean,
I’m not sure whether a light chains increase with myeloma patients when they have an outbreak of shingles. A couple of years, I asked this question at a myeloma information day to one of the consultants and the answer was possibly, mainly because the immune system will be fighting the shingles virus which leaves the immune system more…[Read more]

Hi Angela,

Our family has been covered via private health insurance through my husband’s employment for many years. We have successfully used this insurance for short term treatment such as my son’s sports injury and my husband’s cataract surgery. The treatment was far quicker than the NHS would have been able to provide, which helps when you…[Read more]

Hi Jean,

I still remember the burning and sharp pain associated with shingles when I suffered an outbreak of the virus all down the right hand side of my body a couple of years ago. Most of my right arm was covered in a mess of large red blistering, itchy patches. I was lucky in that the pain only lasted for around 6 weeks, but I struggled…[Read more]

Hi Stephen

After 4 cycles of CDT and a SCT, my light chains reduced from 2,200 to just below 20. It’s been almost four years next month since I was diagnosed in March 2010 with myeloma and over these years, my light chains have behaved unpredictably sometimes increasing, sometimes staying at a plateau for months, sometimes decreasing, but now…[Read more]

Hi Eve,

When I read your comments, like others have mentioned, I just didn’t know what to say. I am so sorry this has happened. I’m really sad for you both. It must be so difficult for the both of you trying to live relatively normal lives in such an abnormal situation. I hope Slim is able to live each day as well as he can to best fulfil his…[Read more]

Hi Scott

Yes, I’m still taking my daily curcumin and I still believe it’s helped me over the past three years of remission. After a bad cold and chest infection last Christmas, my light chains appear to have increased at a much steadier rate over the last year. Although that was my only cold for three years, with no other infections, which is…[Read more]

Hi Tom

I’m so sorry to hear your sad news. It must be such a shock, disappointment and big concern about what the next round of treatment will bring. Fortunately, there appears to be quite a few treatment options available for first remission including some clinical trials, Velcade and the possibility of a second SCT. Apparently the results of…[Read more]

Hello Linda,

You were brave taking part in a netball match! I haven't played netball since primary school, although I remember playing goal attack for many years and thoroughly enjoying the game. My youngest son is almost 21 and he is studying sport and coaching at uni because he wants to become a PE teacher. His main sports are football,…[Read more]

Hi Linda

It's really good to hear from other myeloma patients who have been in remission for a long period of time and who have been able to maintain a good quality of life after undergoing chemotherapy and SCT. It's great news you were able to resume,maintain and enjoy your employment for so many years without any problems with your bone…[Read more]

Hi Helen

Like you, our one son started uni 4 weeks after my SCT and the other a year later. We hardly see them now they are living away from home, until they return for holiday periods or phone us for money, help with accommodation problems or lifts back home.

You are right, you never seem to stop worrying about them. You try to offer…[Read more]

Hi Sandie

I think your mom at aged 87 is coping really well with taking her drugs and still managing to look after herself with your help. I know I would have struggled without my husband's help, especially dealing with the side effects of fatigue and bone pain. My husband had to take over all of the cooking, cleaning, washing, etc because I…[Read more]

Hi Helen

I can completely understand your comments about how much you should tell your son about your myeloma relapse especially with his forthcoming exams. Whilst I was going through CTD treatment, my one son was revising and taking his AS levels and the other his A level retakes.

The eldest son was absolutely fine with his A levels,…[Read more]

Hi David

That's a good idea, especially during the times when you have to take quite a few tablets. Jan x