So here goes…

On Friday I had a call from my specialist Myeloma nurse and found out that I have what they call Nonsecretory Myeloma. Apparently this is a topic shrouded in apprehension and mystery, according to the Myeloma Beacon site. Less than 5% of all patients with multiple myeloma have nonsecretory myeloma. Trust me to get that one! This form of the disease cannot be diagnosed or tracked by the presence of monoclonal (M) protein in the blood and urine or immunofixation studies; however, it can be detected in the bone marrow or upon biopsy of bone lesions. Patients with nonsecretory multiple myeloma are treated the same way as other patients with multiple myeloma with most having the stem cell transplant, that I am in leading up to in a few weeks time. It appears that the prognosis is about the same, however, patients with nonsecretory myeloma are less likely to have myeloma-related kidney damage, which is to be a bonus.

It will all kick off on tomorrow (Tuesday) with another bone biopsy which I reminded my nurse that I WOULD require sedation for. I don’t know why they consider giving it without as it really is pretty painful, having had two without and three with I know the difference. I will then be given a Pic line. Through this I will receive four different chemo regimes daily including apparently getting a little back pack that will continuously deliver one of the chemo drugs throughout the day and night for the four day cycle. I have my room booked into the NHS hotel with a hospital bed on standby if the need arises. I will apparently be able to walk about outside but I need to stay close to the hospital and a trip to Selfridges is out of the question, which is a bit disappointing. I need to stay pretty close by as they have to closely monitor the effects of the drugs to my healthy organs and cells and keep a close eye out for infections as my blood counts drop and I start to become neutropenic due to the loss of my white blood cells. This is a period of time when I am most susceptible to infection and do need to avoid catching anything if I am to prevent ending up in hospital.

All being well I should be home by Sunday. Depending on the outcome of all this I will either need to go through the whole cycle again or have a couple of weeks recovery before going back into hospital for the stem cell transplant. I have previously tolerated my treatment pretty well although I do hope I don’t develop the painful neuropathy again. My hair will fall out at sometime but I can cope with that. I am not looking forward to losing my taste buds again though.

Both Colin and I are a little apprehensive but we are both very confident in the medical team and know we are in the best of care.

I expect it will be a pretty boring week really but I have my knitting and my competition magazine to keep me busy. And of course I have all my technology as long as I don’t go near a washing machine today!

If any one does want to contact me I am on Facebook, you can do so through this blog, most of you have my email address or phone number or I can be reached via the Cotton Rooms at:

Cotton Rooms
1 University Street
London
WC1E 6AQ
Telephone: 020 7380 0030

I shall keep you posted as to how things go.

Enjoy your week remain positive and take some time to appreciate the many beautiful things in the world around you.

Deborah x

Filed under: Myeloma, NHS