Hi

As you probably have realised from your research, Myeloma can be very difficult to diagnose by a GP and consultants because we all can present with different symptoms, which can change over a period of time. The majority of myeloma patients show paraprotein levels in their blood, but a specialist blood test is needed to measure the…[Read more]

Hi Buzz

When I was first diagnosed with myeloma on my 53rd birthday, I was completely overwhelmed by having to go through chemotherapy followed by a sct that I didn’t ask many questions about bone marrow biopsy results, neutrophils or light chain readings prior to sct. My consultant at the time didn’t answer specific questions about results, so I…[Read more]

Hi

It’s so emotional and worrying for you when you see your light chains rising so soon after a sct. However it’s early days and your levels might fall at your next test or further increases might be very small. After my sct in 2010, my light chains were 30, they slowly climbed up and down to 1900 after a long period of five years. I only…[Read more]

Hi Maureen

So sorry to hear you have both suffered with trying to shake off a cold virus, which unfortunately is so common at this time of year. At least Ian has over a month to fully recover before your next trip abroad.

I completed four, three week cycles of Velcade, Dex and cyclophospamide before Christmas, which reduced my light chains…[Read more]

Hi Vicki what a lovely surprise. I’m rarely on forum as I’m on the Facebook forum. Pop in occasionally. How are you doing. Really lovely to hear from you. The say Frank is still in remission but he has now developed diverticulitis which is painful. Seeing consultant 25 February and after all this time I’ve a list of questions Vicki I hope you are…[Read more]

Hi Vicki what a lovely surprise. I’m rarely on forum as I’m on the Facebook forum. Pop in occasionally. How are you doing. Really lovely to hear from you. The say Frank is still in remission but he has now developed diverticulitis which is painful. Seeing consultant 25 February and after all this time I’ve a list of questions. Months before…[Read more]

Hi Vicki what a lovely surprise. I’m rarely on forum as I’m on the Facebook forum. Pop in occasionally. How are you doing. Really lovely to hear from you. The say Frank is still in remission but he has now developed diverticulitis which is painful. Seeing consultant 25 February and after all this time I’ve a list of questions. Months before…[Read more]

Hi Helen

I came home 2 weeks ago,after nearly 4 months away,enjoyed the travelling and the weather was very good,I nearly gave up in the first month as I found it very lonely,never realised couples in General Don,t speak to single women on their own!! A real eye opener,but after a month I did get use to it and began to realise I liked my own…[Read more]

Dear Eve
How are you getting on? How was Christmas? Are you home yet and hows the old dog getting on? I think you are so very adventurous and I love that you just got up and went on your trip, turning dream to reality, keep going girl.
Let us know how you are doing
Much love Helen

Hi there Ali, Jan, Ann, Denise, Rebecca and Melanie and many thanks to you all for your kind replies. It’s nice to know you are out there.
I’ve found this milestone a funny one as it suddenly seems quite a long time now since this journey began and I feel relatively good. I’m not as angry about the situation at last… That’s something that has…[Read more]

Hi Bev

Following reading Margaret’s blog some four years ago, I’ve taken curcumin on a daily basis at the daily dose which she recommends. There have been some interesting comments on this site about taking curcumin. If you type in curcumin in the search box of this discussion forum and on the myeloma beacon site forum, you will find some…[Read more]

Hi Peter

I am sorry that pomalidomide appears to be causing you so many side effects, especially if the drug is managing to keep your myeloma levels in check. It’s balancing quality of life v ongoing treatment. Living with serious side effects which make you unwell must be daunting and depressing. I’m currently on Velcade and it’s causing…[Read more]

Hi, You are right in that I find a second sct quite a daunting prospect especially as I found the first one so exhausting and it took me a good six months to recover sufficient to venture outside the house. Obviously the procedure was not helped by the fact that I couldn’t get my nausea under control with the four cycles of cdt as well as during…[Read more]

Hi Helen,

Reading your title of five years suddenly made me think that it was six years ago this month when my three vertebrae collapsed which certainly speeded up my diagnosis of myeloma. I still remember going through my sct in Sept 2010 and being told at the 100 day consultation meeting afterwards that I would be lucky to achieve two years…[Read more]

Hi Sonia

It’s good news that your husband’s chemotherapy treatment has worked and he is now into the procedure for an sct. I am sorry that no one has replied to your post so far. There are a quite number of people on this forum who have undergone an sct, but I don’t know if any one has had theirs done at Southampton hospital. Hopefully you will…[Read more]

Hi Sonia

It’s good news that your husband’s chemotherapy treatment has worked and he is now into the procedure for an sct. I am sorry that no one has replied to your post so far. There are a quite number of people on this forum who have undergone an sct, but I don’t know if any one has had theirs done at Southampton hospital. Hopefully you will…[Read more]

Hi Jan
I waited for 4 weeks after finishing chemo for stem cell collection then 4 weeks after that for transplant, but I’ve only had the one transplant and I think it’s unlikely that I’ll have another as my cytogenetic problem is one where auto transplant is least effective, but who knows what might happen if I run out of other options.
You look…[Read more]

Hi Helen

Good to hear from you. I’m not sure about the transplant yet because my light chains increased from 150 to 350 after just two weeks rest from the drugs over Christmas. I’m now on a five week cycle of a Velcade injection once a week, with one week off with a possible four cycles to complete. Cyclophosamide has been taken out of the…[Read more]

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]