Diagnosed in 2003 What symtoms did you have? You said you also have had lymp node involvement was that later after diagnose or how was that detected? Did you recieve chemo as well as having your spleen removed? How have you been doing since?
As far as I know mine is in the breasts. I am about to have another CT scan and also a scope of my stomach to check for H-Pylory I have been having problems with my stomach since January I feel that something is going on there? Please keep in touch and I hope all is well.
Hi There, So glad you are still using this board. This is the first time I have met someone the MZL, it is exciting and sad all at the same time.
I am no expert on the disease,but, I am an expert on my body and what I have gone thru. I hope I can help you.
I was diagnosed with mono in 1996 which never went away and after 12 months my disease was renamed as Epstein Bar. I had incredible fatigue that I lived with for almost 7 years. In Feb 2003, I had a ovarian cyst that ruptured and spent a few days in the hospital. The Dr.'s there noticed my blood counts were not were they should be and sent in a hematologist/oncologist who preformed a bone marrow biopsy. He also thought my spleen was rather large. The biopsy returned with 'suspicious lymphocyte activity". He was baffled. He did say he thought it was Lymphoma. I immediately called the Dana Farber Cancer Inst. and made an appointment. They again, collected more marrow and advised me to have my spleen removed. There was not any node involvement at that time.
Spleen weighed 4 lbs. and no node involvement. With the spleen tissue, Dana Farber was able to diagnose. Since I live 90 min. from Boston, they referred me to a local hema/oncono who administered my first round of Rituxan. For me, chemo was as good as it could of been. Only more fatigue and a little belly sickness. I was in remission for 18 months being monitored with PET scans. 2005, a pet scan showed hot spots in my neck and the fatigue was back along with night sweats and daily fevers. Another round of rituxan. This roller coaster has been going on for 6 years. I now again, have hot spots in my neck nodes and my local Doc is working on a plan with Boston Doc. The Rituxan seems to be working but cannot hold me in remission for very long. I have had 4 rounds. They may change the chemo. I am requesting removal of a node to make sure cancer has not transformed into another kind of blood cancer, as our cancer can do. This is not unusual and I hope they honor my request to grab some tissue. The tissue also allows me to send speciman to Dr. David Fisher at Dana Farber and Dr. Zelenetz at Sloan Kittering to make sure all pros are on the same page. This does not cost me anything but a few phone calls. I can tell you after each round of chemo, no active cancer cells are found at the time.
Regardless, everytime I come out of remission my symptoms mimic my first ever symptoms. FATIGUE, FATIGUE, FATIGUE. Low grade fevers that I can now identify without a thermator and night sweats. I have usually lost a few lbs but now I have gained a few, weird in the summer, so I am not sure if this is a true symptom for me. I have found, fighting this disease for 6 years that only PET scans show ACTIVE cancer cells. It can pick up cancer cells before my lymph nodes become swollen. I will NEVER have another bone marrow biopsy, I have had 5, so that test is a moot point, my Docs know to not even ask.
I am a true believer of IF SOMETHING DOES NOT BELONG WHERE IT IS, DESTROY IT OR GET IT OUT. Most Docs are "watch-n-wait". I am also not very good with that theory. My Docs respect that in me while trying to remain cautious. FYI..................cat scans can locate swollen lymph nodes or organs, but cannot tell if cancer is active, however, a PET is also combined with CT actually uses color to distinguish ACTIVE cancer cells. It is quite amazing, and VERY expensive, my insurance does cover it. Docs tend not to order a PET scan due to costs, but I was adament I wanted the first one, and now my Dr. is very good at giving me them instead of CT.
If they are going in your belly, maybe they can take a biopsy of a node while in there, or at least remove some tissue to be tested.
GOOD LUCK, my thoughts are with you, I am here for anything you need. When I was first diagnosed, my family was devastated and I needed support. I received that thru this site. So again, I am here with ears on, limited knowledge available and a shoulder!! The disease may have me at the moment, but I always win me back!!! And will continue to win ME back!!
Debi