I awoke one beautiful day I late April 2012 with a rash. It was like prickly heat rash everywhere. I tried to get in to see my primary care giver but she was booked. So no wanting to mess around with it I went to a local emergency care clinic they never really said what they thought the rash was but ran CBC. When the doc returned to the room she asked me how I felt other then the rash I told her I felt fine, why?
She said you are so anemic you may want to consider being transfused and to get with my doc to run more tests which I did about three days later and took off for the ocean with my daughter and grandson . We were gone three days and on the way home in the car I get a phone call from my doc she said Mrs. Filicko you have multiple myeloma and you are going to need some chemotherapy. I can recommend someone if you like. Wow! What! My god! Etc etc. So this was the beginning of my journey.
After seeing one hemo onocoligist I decided to go to CTC. They were great and ran every conceivable test but ultimately I decided on treatment closer to home. I started on velcade subq and dex weekly then the doc said we need to address this spot on your lung so they did a biopsy and sure enough it was another cancer unrelated to the myeloma.
In the meantime I had developed a fib which they thought was made worse by the chemo. So in order to address the lung I had to have a pacemaker before my lung surgery which I had in October of 2012. They removed the upper left lobe of my lung where they were happy to inform me that it was insitu contained and that they had gotten it all unfortunately they could not get the breathing tubes in because of my wind pipe would not accommodate the larger tubes in order to do a less invasive procedure which would have left much less of a scar. Also my trachea swelled around the tube so I was kept unconscious for 2 days so when the took the tube out there was some concern if I would regain my voice or not. I did after about a week of soft foods and liquids.
So now back to myeloma treatment. My numbers by end of December were great and I was in VG remission so we started talking about a bone marrow transplant which gave me the best hope for long term survival so we started with the shots in the belly in February 2013 harvested my cells in March and did the transplant April 3 2013. When I went in the hospital I was feeling really great lots of energy positive attitude etc. I walked and walked around the ward until I got the dreaded c dif and was confined to my room for about 20 days .
They watch your blood count every day and mine was just not going up so I had more stem cells and then the numbers flew up an I was released April 28 the experience was nothing like I thought it would be I didn’t feel sick or have hardly any side effects so home I went to a sparkling clean house. Thanks to my family and a new appreciation for the little things, after all it’s not everyday your mortality comes around and slaps you down. So the results of the transplant in July 2013 were and continue to stringent complete remission.
It is now a little over a year. I am on revlimid 10 daily. Not to many side effects other than some diarrhea. Also zometa infusion once a month for a year. If I could tell people newly diagnose try not to panic stay off the internet except for reliable sources like this site or the IMF website. Breath!