The amount of help and kindness in the Cleveland area is amazing. While my care has been at the Cleveland Clinic, this week I went to speak to professionals at University Hospital Siedman Center. Everyone, from receptionists to nurses to physicians, are always quick to ask - what do you need? what can we do?
Last Friday I completed Cycle 3 of my 4. Today was an appointment at the University Hospitals Seidman Cancer Clinic to discuss my future. I had my blood work done today as well (which I have done every Friday).
I learned quite a bit at today's appointment. Honestly, I think some of it, I had been told before but it didn't sink in and much of it was new. So here is the info.....
I will have a total of 4 cycles of chemotherapy. September 12th will, technically, be my last round. From my surgical pathology, it was determined the exact gene that my cancer is. Based on this, research and clinical trials, determine what happens next. Research has shown that 4 cycles is enough IF the cancer hasn't spread. The gene that they test for, a mutant gene, is NOT in my cancer. That means that maintenance chemotherapy is really not productive until my cancer has gone somewhere else in my body.
Approximately one month after my last chemotherapy, I will go for a CAT Scan and PET Scan to see if (and where) the cancer has gone. I will also have extensive blood work to look for markers that may determine if there are cancer cells within my body that the scans can't pick up.
So, basically, a final determination of what my future treatment is until October. The doctor explained the effects of Chemotherapy are not worth continuing with my type of cancer(s) unless it shows it is progressing. Therefore, I will have to have scans approximately every three months even if I appear to be cancer free.
The doctor was quite honest with me - he told me, while the surgeon did remove all my tumors, the reality is that it went into my lymph nodes and that means it is within my body somewhere. It is not a question of if it re-appears but when.
Since February, I can't think of a time when I felt well...or like myself. First the infections and antibiotics, then the surgery and recuperation from that, then the chemotherapy and all its side-effects.
While I'm dreading October for fear of bad news, I am also looking forward to it thinking the chemotherapy side effects will be gone and maybe for the first time in 9 months, I'll feel like my old self. Reading this post, I think I sound a bit negative but I am truly looking forward to a time when treatments and side-effects are not a part of my daily routine.
One last thing that was decided today is that I no longer have to have weekly bloodwork. Since my levels have been within normal ranges for the first 3 cycles, I can stop and only have it done once a month - YAY!!