I am seeking advice and opinions on a personal situation...
Back in 2007, I first found out I was pregnant so I went to my OB who conducted the regular bloodwork. My CBC came back pretty wacked out and it was ultimately discovered that I had CML. After getting two doctor opinions, my husband and I decided to begin seeing an onc at the siteman cancer center in st. louis. We also chose to wait on treatment until the second trimester, at which time I began taking Interferon alpha. I took interferon throughout the second and third trimesters and we now have a beautiful healthy 3 year old daughter (almost 4). As soon as she was born, I began taking gleevec and within a year I was in molecular remission! After the pregnancy, I continued to have this nagging pain that started in my lower back and shot down the side of my left leg to my foot. While pregnant, I thought it was due to the pregnancy, but now think it could be from the biopsy or interferon.
After a year of discussion with all my doctors, my husband and I decided to try to have one more child. Last April (about 10 months ago), I switched from Gleevec to Interferon and we began trying. We did get pregnant quickly, but just as quickly lost it. Since I did not want to switch back and forth between Gleevec and Interferon due to my doctors concern with forming a resistance to Gleevec, we started trying again as soon as we could. At this point, we are not pregnant and I have been on Interferon for 10 months. My doses are pretty low - 3 mill units, 5Xs a week. Since I only take interferon 5xs a week, my symptoms restart with the beginning of each cycle... So I found myself having cold chills, sweats, muscle and joint pain every weekend when I restart my 5 days - that was until my doc prescribed vicotin. My doc tried bumping me to 7 days a week but had to lower it again because of white counts, platelets, etc getting to low.
From the beginning, I have had arthritis-like pain in my hands and feet, coupled with headaches. Each morning, I have tingling in my hands and feet, which filtered into my arms when I was on the higher dose. Back pains seem to be developing too. My skin is very sensitive to pain also, and I seem more prone to depression. To help the pain, they prescribed vicotin and my OB has actually approved it for the first two trimester of pregnancy. I am still in molecular remission, but 10 months into Interferon and not knowing when I will even get pregnant again is becoming daunting. I just found out that some people who develop neuropathy during interferon treatment report that it does not go away. Have any of you experienced this? If so, did your neuropathy go away after interferon treatments ended? Also, I am trying to decide how long we should try before giving up. We wanted to try through the end of the summer, but knowing about the problems others have had with neuropathy may change that for me. Any words of advice? By the way, I am currently 34 years old.