Well, if all goes well- this should be my last chemotherapy ever! Well chemotherapy up in the Hartford hospital that is. The plan is to do a mini allo stem cell transplant at Dana Farber in Boston. I plan to chronicle my journey to help other patients considering this option.
My background of Follicular Lymphoma:
I was diagnosed right after my 22nd birthday but had been living with low grade probably a stage one for a while. I began rituxin in October of 2009. I did the 4 rounds and then an additional one in December of that year. Then at the end of December, SURPRISE! I was pregnant. Now my doctor was not very happy with me but he had to let that go. My pregnancy basically made my cancer go away and I was feeling as good as a pregnant woman could feel. I had Riley in September of 2010 and quickly after my cancer turned aggressive. I began r bendamustine and did about six rounds. I was doing better but it came back again around November of 2011. It was not
Transformed so I planned to do a clinical trial up at Dana Farber. I kept waiting for the trial to open up and two days before I got the email about it starting.. SURPRISE- I was pregnant. I know, I
Know why do I keep getting pregnant? I blame it on the acupuncture and asparagus. Anyways that was in February of 2012 and miraculously all of my nodes in my neck that had been choking me disappeared and I felt great. Seems like I only feel okay when pregnant but that can't last. I had Olivia in November and within a week it was aggressive again. Met with Dana Farber again and they told me now was the time for transplant. I had to get into remission first, of course. That was like a punch in the stomach. They always told me I would transplant one day but I did not expect it to be then. So
I started R CVP against their recommendations of R CHOP. I was trying to save R CHOP for future but r CVP just wasn't cutting it so I gave into the chop. Glad I did because then I got to cut back on the paracentisis. R CHOP did not get me into that great of a remission but I did finally lose my hair. It took until my last cycle for it to be all gone, which is rare. I refused to shave it. I just let it thin and thin and thin until I had three Homer Simpson hairs on my head. I only did cut them after my hair started growing back and it was messing with my rocker short cut. So now was the time they wanted me to do transplant and a full transplant now! I was not ready. I wanted to try natural strategies. My natural strategies consisted of a parasite cleanse and a revamp of my diet. This made me lose 15 lbs and gain shingles. Ouch. I got my port out one week before I got sick again. Pretty embarrassing. Anyways after looking pregnant and not being able to breathe I decided hey I'm ready for the transplant. I'm scared to death of another aggressive scare. So my doctor put me on RICE, a salvage therapy. I hate how they call it that. Makes it seem like its my only chance. I don't think he had much hope, but I did. RICE gave me an intense confusion reaction but I went from 9
Months pregnant to a skeleton in a week. I changed to R DHAP and had two more cycles. Pet scan showed less evidence of cancer than in the past five years! Whoopeeee. Now back to Dana Farber where I am not their favorite patient. They said I can do the mini transplant instead. Yay! I was scared to be away from my kids for the full allo time but now I'm worried ill be too far in case of complications. But the doctor there isn't my biggest fan. He thinks I'm going to change my mind or something. I never agreed to do the transplant back in May. I actually said I wasn't ready. This time I said I'm ready and he doesn't believe me?? The only savior for his attitude is the patient coordinator. Love her.
Well I am now 26 with a husband and two beautiful daughters going into this journey. I am very spiritual and positive so I know I will be cured. My background information was scattered and its hard to explain five years of diagnosis & treatment but if anyone has any questions about any of it please don't hesitate to ask.