Hi all!
I'm new here!
My mum was diagnosed with asymptomatic myeloma on December 9th 2015. Her initial paraprotein count was around 12 .
Aside from lowered immune system which resulted in pneumonia in 2016 and 2017, she has been well
.Last year, she was asked to take part in a research study looking into the possibility of curcumin being used for myeloma.
Her count slowly rose - in March it had risen to 35, and although still asymptomatic, her consultant recommended chemo while her body was strong. She had velcade and cyclophosphamide, plus a box full of other drugs.
During the first cycle, she suffered nausea and fatigue, and after the last injection of the first cycle, she developed a very high temp and went into hospital and was immediately put on a cocktail of broad spectrum IV antibiotics. Aside from the high temp, she was well in herself but gradually deteriorated - by the 4th day, we were sure ste wasn't going to make it - she was on 7L of oxygen and could hardly get a word out. I had prayed over her, and a couple of days later, my friends visited and she allowed them to lay hands on her and pray. Her oxygen needs reduced and the next evening she was discharged.
She had a gap of several weeks between her hospital stay and the next cycle of chemo, but bloods she had done after the first cycle showed an 80% reduction in her paraprotein levels - down from 35 to 7 - lower than when she diagnosed. We were thrilled to hear this!
During her second cycle, she had absolutely no side effects - she was gardening and eating well - we were amazed. Her levels continued to fall, but the oncology consultant said they would do a minimum of 4 cycles, and her count has continued to fall since she completed her 4th cycle at the end of July. Her most recent count was 3,2
When the doctors said they wanted to do chemo, my mum had just had a tooth removed. She told us the doctor wanted her to have some slightly more aggressive treatment but due to the recent tooth extraction, she had to wait until July, then in June she told us she was having more aggressive chemo and a stem cell transplant, requiring a 3 week hospital stay in protective isolation and that she had to limit her visitors to just 4 people.
I suffer with anxiety and depression, and my mum didn't tell me about her count rising because she didn't want me to worry, however, I explained to her that telling me what's going on means I can gradually deal with things. She also knew when she started the first round of chemo that she would be having aggressive chemo and a stem cell transplant, but despite me explaining that I can deal with things better If I know sooner rather than later, she kept it from me. Her treatment could start as soon as 7th Oct and I'm struggling to deal with it all.
I had a fall 4 years ago which ended my nursing career, so I know it's going to be a rough time and 3 weeks in hospital is only going to be the start.
My mum is 73, she has refused to apply for PIP, she has refused to contact Macmillan for support for herself and all of us, despite knowing how fantastic they were in supporting my aunt and uncle when my aunt had ovarian cancer - they advised on benefits they could claim and helped them fill in all the applications. She doesn't see her situation as being as bad as my aunts and won't look into anything that may help her.
Sorry I've waffled on so much here - just felt a need to vent a bit.
