Blood Cancer Survivor of the Month (March): Madelon's Story

I was born (1957) with severe asthma and allergies. I had part of my right lung removed when I was 19. There were not as many drugs on the market then. I was blessed as I got married and had two children. I tell people that get a cold or flu now and that is how I felt most of my life. I was able to finally complete school and I became a respiratory therapist. When I first started my career as a RT my patients were cystic fibrosis patients. I couldn't imagine knowing you had a disease that was terminal. I had a respiratory arrest and the physicians thought that I was brain dead. Almost two years to the day it happened again. Around 2000 many more drugs were on the market and lots of prayer my symptoms drastically improved. Now this is where the big sipped bumps come into play. In 2002, I was still getting infection after infection but was able to work etc. Routine blood work showed anemia which my primary care physician could not identify . She referred me to a hematologist/oncologist which diganosed me with Monoclonal gammopathy of underdetermined significance (MGUS), which is a paraprotein found in the blood and it resembles Multiple Myeloma. My m-spike at that time was like 1. It was monitored every 3 months for about 5 years . The number increased slightly but not by much so my a ppts were moved to every 6 mo. I had a couple of bm bx during this period. M-spike increased to 1.6 around 2008 . So more BMB and bone survey. Moved check ups back to every 3 months. During this time I was stared on iVIG for the infections. Feeling tired and run down from work, home life and I play organ at our church. In Feb of 2010 my M-spike jumped to almost 5. That is when I got the dreaded news. It was all like a dream or should I say nightmare. I was stared on velcade and steroids. Well steroids had already been in my life steadily because of my past history. The plan was to bring the m-spike down to 0 and get SCT. Well the dosage of velcade was making my fingertips and toes turn blue so it was decreased. This caused the numbers not to decrease as rapidly as my transplant physician wanted. They tried adding revlimid. Still the M-spike was being stubborn. My docs decided to hit me hard with a combination of chemo in which I was constantly hooked up to this back pack for a week. I had four rounds of this and this is when THE HAIR FELL OUT!. I was admitted the first week of nov 2010 for my line for the transplant and was given more intense chemo. Went home for 2 weeks and then I was admitted for the big day and my dose of melphalan. I received my SCT Nov 24,2010. By the way ,the harvesting of my cells went well. They were able to harvest enough for two SCT if needed. So to speed the story up , m-spike was .6 and fell to .3. First BMB post SCT was 10% . Second BMB showed 35% and her we go again. I begged my transplant physician to do another one. He told me I had to wait either 2or3 wks. He had began processing paper work for another transplant. I am an only child so he began looking for a donor. So, when he repeated the BMB ,it was back down to 10%. In the meantime they did find a match for me. We had lots of meetings with both docs and decided to watch and wait. Everything seemed to be holding steady with my partial remission until Feb 2012. My m-spike increased form .3 to 1.5. Again here we go working up for the allo. I was placed on Revlimid 10mg and pred 40mg M,W,F. I felt better than I had felt in a long time, so the decision was made again to watch and wait while being on the maintenance drugs. The steroids make you crazy!!! With side effects so they have been lowered to 10mg. I have had 2 bone surveys and 2 pet scans and I have no tumors or lesions. I still receive IVIG every 4 wks and I am almost due for my pet scan etc. Docs say I look really good and they can't explain it even with the numbers being slightly elevated so they really don't want to put me through all that at this time. My quality of life is good for now. One of my maintenance meds also include cyclophosphamide 50 mg daily.

Yes there are days of fatigue and slight nausea along with neuropathy which seems to be my biggest issue right now. I know that God is keeping me and this really has made me learn how to lean totally on him. I have to take each day at a time. Every time I wake up I thank God and try to live that day to its fullest as though it was my last! WAITING!! And Living!


#KEEPPUSHING MADELON! Thank you for sharing. May God continue to bless you on this journey and in your life!