Hi,

Good to read that you are feeling OK after your sct. You are doing well to have the energy and fitness to be playing golf. I think it took me a good six months after my sct before I had sufficient energy to go out. Hopefully your peripheral neuropathy will get better with time. With my present sixth cycles of VCD treatment, I’ve been…[Read more]

Hi,

It’s a tough decision when it’s your grandson. I suppose it depends on whether you think he still has the actual cold virus and whether he is still coughing and sneezing with possible spread of the virus. Since being diagnosed with myeloma, my immunity levels are low and I tend to easily catch a cold virus. I also know it now takes me six…[Read more]

Hi,

My first investigations, CDT and stem cell transplant in 2010 were all financed via my husband’s employment medical insurance with Aviva. Because we knew little about cancer treatment, I think the restrictions on the policy had gone unnoticed by us until I was starting the different parts of the treatment. The Aviva policy restricted the…[Read more]

Hi Andy,

It’s good to hear that you are OK and managing with your current drug regime. Long may the drugs continue to work for you. I’ve missed reading your updates. Every time I caught a cold virus and also with the shingles virus, my light chains would rise by around 300, but after recovering from the virus the light chains would never drop…[Read more]

Hi, I was only 52 years old when I found out that I had myeloma. It’s such a shock to be diagnosed with any form of cancer, but especially one which cannot be cured and requires ongoing treatment. Your sister will most likely need some time to adjust to the whole situation. She will be thinking about so many different factors, which is daunting…[Read more]

Hi, I think it’s normal to be apprehensive about your sct. I found myself quite emotional the week prior to my sct in 2010, mainly due to my concerns as to whether I would be able to cope with the whole process, especially the isolation and the side effects of the treatment. I found the staff and care on the Heartland’s sct ward were excellent.…[Read more]

Hi, Just thought I would wish you all the best for your transplant at the QE Birmingham next week. I hope all goes well and the treatment gives you a good period of remission. I had my first sct at Heartlands hospital in 2010 aged 53 years, which gave me a good five years of remission. I changed to the QE hospital in 2012 and started relapse…[Read more]

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 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 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]

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]