February 2009 Update

Hi all,

I went for my normal monthly treatment at the Milton Keynes Macmillan Cancer Unit on February 12th 2009. For a change my IV drip went in first time, they don’t worry me at all now, I am so used to them. The good news is that the Sandoglobulin Infusion is working, basically it’s Human Immunoglobulin, taken from a pool of 20,000 blood donors and made into a clear liquid and infused into me over 6 hours once a month. The infusion is given to me because I have very low immunity and it is working to keep my repeated infections away.

After sitting having my infusion for a while I am called into the examination room to see my specialist, this time I saw her registrar. I got my blood results from my last visit and my levels have unfortunately gone up, which is not good because it means that my disease is progressing to a more active state. Some people reading this will understand the levels and some won’t but here are a few results I have received.

Kappa Light Chain up from November it was 126 and is now 157.
Lambda Light Chain is down from November it was 2.4 and is now 1.0.
The Kappa Lambda Ratio has gone up since November from 52.50 to 111.
My paraprotein is 29.2.
I didn’t get my IGg level
I still have Hyperviscosity (Thickened blood)

The worst part of my results was my MRI scan which I had done 3 weeks ago. I have been getting pain in my spine at the top, middle and bottom so I reported it to my specialist and she sent me for an MRI scan. I was due to have one in March anyway but she brought it forward due to the pain. The results shocked me !!! I knew that the pain was probably due to herniated (slipped disks) and sure enough I was proved right. I have 2 bulging disks in my cervical spine (top/neck) I have one slightly torn disk in the Thorasic spine (middle) and I still have a disc burning out in my Lumbar (lower) spine, which I knew about from my last MRI scan. My scan also showed that the Myeloma (plasma cell cancer) has infiltrated the bone marrow in my spine from top to bottom. The registrar has said that chemo will probably begin in two or three months :-(

I was too shocked to really understand what was said and there were many questions I should have asked but didn’t!!! I have had to do my research to find out what this means. Basically an MRI shows a detailed view of bones, soft tissues and marrow, the scan image looks fairly dark in shades of greys in a normal MRI scan, when myeloma infiltrates the marrow of the spine a more intense signal is recieved by the MRI scanner and it shows up as a brighter, whiter area on the image. MRI scans are used to check for this infiltration and all my previous scans have been negative for myeloma. I now have to have a skeletal survey (full body x-rays) to check for lesions (punched out holes) in the bones as these do not show up on MRI scans. I was due to have this done in March but it has been brought forward because of the MRI results. I will be having a bone marrow biopsy in March to check the levels of myeloma in the marrow. Normal marrow contains less than 5% plasma cells, my last biopsy over a year ago showed 26% plasma, which is all bad plasma (myeloma cells).

My specialist cannot yet tell whether I still have smouldering myeloma or whether I now have full blown myeloma. From the results and the research I have done I know that I now have full blown myeloma, as myeloma bone marrow is not seen in the MRI scans of normal people or those with just a monoclonal protein in their blood. There has to be a lot of myeloma in the marrow to show up on MRI especially when a contrast injection is not used before the scan. People with myeloma which shows on MRI, have a poorer prognosis (lifespan/outcome) than those that do not show infiltration on MRI.

So it looks like I am at the crossover, not only are my results bad bt I am starting to get symptoms now, I have had 5 night sweats (wake up soaked through) in the last 6 weeks, my back is permanently aching like I have bad toothace or a red hot tennis ball in my lower spine, and I am getting very tired and spaced out and my appetite isn’t quite as good as it was.

So folks it looks like the rot may have set in, and I now have a hell of a fight on my hands. Mutiple Myeloma is not curable, but it is treatable to relieve symptoms and try and slow down the disease progression. Average survival is 5 years with treatment, it is 9 months without treatment !!! Some lucky people have for 10 even 20 years after diagnosis, so its not all doom and gloom and new treatments are popping up all the time. Death in myeloma usually occurs through the medication/treatment no longer having an effect and the usual cause of death is kidney failure, infection or other multiple organ failure. During treatment remission will hopefully be acheived many times and hopefully a long remission will be achieved after a stem cell transplant, which can also be repeated several times, as long as the treatments work the patients survive, so its not all bad news.

I am keeping mentally and physically strong and I am still keeping myself busy with my Interior Design Degree and my mad crazy circus of a family, bless them all and I absolutely refuse to be miserable, I have no time for that and it solves nothing, a strong stress free attitude will help me through and with my family by my side I have the strength of an army. I will update my blog when I get my next results through. Take care xxxxxx :-)