Ok, I guess I need to accept that this is where I need to be. Bear with me because this WILL be long, but I'll keep it as short as possible!
My dad was diagnosed with NSCLC Stage IIIB in 12/98 and lived just 9 months (passed away 9/2/99). He received different combinations of chemotherapy including Taxol/Carboplatin combo, and all combinations left him weak, sick, and constipated. In all honesty, he gave up right away, and I was just informed by my mom last year that he never quit smoking because in his opinion, "the damage was already done." The cancer had metastasized to the lymph nodes (he had a softball sized tumor in his upper right lung which was pressing on his esophogus) and eventually, spread to his left lung and then to his brain.
So he passed away on 9/2/99. In November the same year, I took my mom for her mammogram and she was sent to radiology that day for an x-ray, which showed a small mass in her left breast. FNA biopsy was inconclusive, and a lumpectomy was done. She was diagnosed with ER/PR+ breast cancer stage I, seven weeks after we buried my father. She underwent 33 radiation treatments and took Tamoxifen, which she would have been on for five years and thus declared "NED" last month.
In February she was placed on hemodialysis, after a diagnosis of PKD (polycystic kidney disease) and doing rather well, save for the fatigue associated with the hemodialysis. We all thought, now THIS is what she needed to get well. Also, as a side note but equally important, my mom is in Post-Polio syndrome, as she has had Polio since age 13 and developed scoliosis from it a few years later, so in the past few years she has degenerated progressively so that she is pretty much confined to a wheelchair.
In October she had a cold which never seemed to go away and complained to her nephrologist of shortness of breath and back pain. Long stort short, she went through two thoracenteces which were biopsied and showed "suspicious" cells. In the meantime, she had also been seeing her orthopaedic surgeon and going through physical therapy, and since he was a friend of the family, ordered an MRI and admitted her. The next two weeks were hell as she had a chemical pleurdodesis with talc to control the fluid buildup, and a bronchoscopy which showed "numerous small tumors in the pleural lining." Obviously with malignant pleural effusion there has to be a primary tumor, and they could not find it at this hospital. She was actually released with no concrete diagnosis. One day is was recurrent breast cancer, the next it was primary lung. We returned to her oncologist, who initially recommended Femara, (for the breast cancer) and then left the room, returned with more results and said, "Oh, this tumor is ER/PR NEGATIVE, this is not breast cancer." So we were back to not knowing where the primary tumor was. At that point I told my mom we were headed for Cancer Treatment Centers of America.
We left on Dec 1 for the Zion hospital with my husband, twins, and my mom's caregiver (she lives with us, and her caregiver is my best friend) in tow. The hospital is only about 75 miles from us so we are pretty lucky. We did the 3-day appointment and were amazed by the staff and what they offer, to say the least. During that time, she repeated her scans and we went back last week to meet with the oncologist, who told us that there IS a lung tumor (from what I understand, rather small) in the right lung, something in the left lung which is VERY small and they're not sure WHAT it is, and of course the malignant pleural effusion makes this stage IIIB.
The course of treatment which was recommended to her was IRESSA, and this is ironic to me because IRESSA was in a clinical trial when my dad was undergoing chemo in 1999. It was my understanding that IRESSA is only offered to patients who was failed two other forms of chemotherapy, but the oncologist at CTCA said he would fight to make insurance cover it since they are all in agreement that it would be the best bet given the kidney function, and it is questionable what would be dialyzed out and what would actually get to the cancer. Plus, we met with the medical oncologist yesterday and he said the dialysis is NOT a major factor, but her Post-polio syndrome IS, because chemotherapy can cause nerve damage, which we obviously do not want. She is to take the IRESSA for one month and return to CTCA to repeat the scans. We also met with the nutritionist who emphasized high protein (which she is on for dialysis) and a few other things. All in all we are pleased with the oncologist, and he said they MAY consider tomotherapy in the future, once the tumor is shrunk from the IRESSA.
All that being said, I am mentally and physically exhausted from all of these trips to CTCA, and with the holidays coming and presents to get. On top if it all, my twins' third birthday is tomorrow and I am not prepared at ALL for it because we've been going up to Zion so frequently. Yesterday we were up at 3:45am for her appointment, and we didn't come home until 7:45pm, because we met with the nutritionist, the therapist, the radiation oncologist, and the medical oncologist, one appointment on top of each other. Today I got the phone calls from the case manager (I am dealing with this because my mom is at dialysis) regarding her IRESSA prescription and just got the news that it will be $1839.54 WITH her prescription card. I told the mail order pharmacy to hold off putting it through for now because I'm hoping we can get it for cheaper than this, although from the looks of it, those chances are slim to none. Does anyone perhaps have another discount online pharmacy they deal with that is cheaper? I realize that you do what you have to to get well, but she already drops about $600 per month on prescriptions for her renal insufficiency, so this is going to be a shock to her when she comes home. And also, if anyone is going to CTCA in Zion, I'd love to talk with you! We have met some wonderful friends already and I'd love to expand that circle of friendship, although I am sad that we have to share this tragic diagnosis. And maybe we can also learn from each other.
Thanks for listening if you've made it this far.
Erin
