My Birthday Message

[Christine]

Just wanted to share with you all my thoughts on my 7th birthday after being diagnosed with stage 4 and brain metastases. I was diagnosed in 1990 with stage 1 and supposedly had no nodes with a great prognosis. I was told in 1990, that the tumor was 1.5 cm and was a grade 3-4, high enough to get my attention to be vigilant about my self exams. It took 9 years for me to find the relapse, under my left collarbone. The previous 3 months. I had 3 bouts with vertigo and had never heard of getting brain tumors from breast cancer. This was a new phenomenon I had to deal with. In early spring ’99 I tried to surf the web for help, hearing only the voice of doom…I was interested in finding more current info on line and researched further about new therapies for Stage 4 BC.


The voice persisted with no help in sight especially since I had 3 brain tumors making my survival look very grim…. I was feeling much better, when I finally fell on a search engine with more current up-to-date info on a new chemotherapy that was FDA approved 6 months before my DX; and that was Herceptin. I needed to be tested for the HER2neu gene. After the biopsy was done, the surgeon did not know of this type of test so I asked for the HER2neu test soon after. Voila!! It was 3+++. I felt a sigh of relief even though I really didn’t know much about Herceptin yet…



Soon after I was very tired, losing weight, and coughing. I began thinking of moving from NJ to CA, San Diego. My only brother and family living in San Diego, and I felt my 2 daughters needed more family. My husband and I made a quick decision to go west, sell our home and fly to an oncologist in San Diego who came recommended by BC patients who already knew about Herceptin, since all the research had been done in Los Angeles. It really did take a long time for Herceptin to spread awareness throughout the country. Many patients and oncologists were not too eager to try a new chemo on such sick women. The California and east coast oncs seemed more knowledgeable in 1999-2000. My new onc was very concerned about my brain tumors and wanted me to have a Radiation Oncologist as well. I started A/C first. It was totally ineffective and my condition continued to progress with more fluid in my lungs. I was drowning in my own fluid and not able breath and started to speak with a gritty voice. I went to my onc and refused my 4th cycle of A/C, and wanted Herceptin instead, hoping this new chemo would help my present condition. I was dealing with virtually 2 problem areas. The next day I was given an infusion of Herceptin /Taxol along with Decadron and Benedryl as premeds. After 3 days I felt remarkably better, and felt a dramatic evaporating sensation of fluid in my left lung. It was miraculous and unbelievable. Prior to this great event I was prepared for a brain tx called Gamma-Knife stereotactic radiation therapy. I was given Procrit and Decadron That was all new to me, but a very tolerable one-day procedure It went well, except after 6 months, of surveillance, MRI scan showed 6 tiny mets had appeared as new tumors in other parts of my brain. I realized exactly what I needed next to save my life. My brain was a nest for tiny mini mets hidden from scans until more than 2mm’s in size. How long would it be before more showed up in more dangerous locations. Whole brain radiation was my next option. I figured this was my only option. I read about the doses, the # of days, and relevance to minimal brain damaging side effects. It turns out the longer the daily doses, the smaller the daily doses. I wanted to have the longest effective treatment with lower rads. I was given 20 days of 2 grey/ day for 20 days, totaling 40 grey. Brain radiation is very fatiguing for a few months, but read more about how to survive such an energy consuming form of fatigue. The only way is to keep nourishing your body and hydrate with nourishing fluids with electrolytes, such as sports drinks. It was a few months later that all looked up for me, until one tumor that measured 2 cm prior to brain radiation that was shrinking, started to grow a few mm’s over 2 months. My radiation onc wanted to have it removed by my Neurosurgeon. I needed a second opinion, and went to a very notable brain surgeon in L.A. This physician had the last word. He felt I needed to be patient and continue scanning, which made sense to me since I had the treatment. The new radiation Oncologist I sought agreed. He felt the tumor was not growing like a cancer, and will eventually be going stable and in remission over a few more MRI scans. I was also told that the radiation is still working over 9 months. The longer the daily doses the longer the radiation works. Well…it sure did work. All my brain metastases and node and lung involvement with cancer has all been resolved since Nov.2000. I continued to have MRI’S every 6 months, and had body Cat-Scans, completely negative with markers totally normal. My real birthday wish is for all of you to find your way to survival and NED for all. This was a great opportunity for me to get my real message across the web. God bless you with wellness and strength.

Hugs, Christine