As usual, Dr. Kocs comes in, tells me "there's trouble" and shakes my hand. We've been doing this for 6 + years now. Love him!! But I have questions.
First up, blood work. I told Dr. Kocs that I am a PM and, therefore, project managing my cancer and tracking my blood test results. He rolled his eyes and Mike mentioned that he saw the nurses doing rock-paper-scissor when they saw me coming in to see who got the short straw that week. Ha Ha! Actually, the nurses love me cuz I'm fun! Regardless, he looked at me and said Vicki - PM, Dr, Kocs - Oncologist. It is his job to worry for me. I know he has my back and I trust him (he is a straight shooter and never holds back); I just need to pretend I have some control. Anyway he says he is mainly looking at red blood cell counts, white blood cell counts, and platelet counts. He is very pleased and surprised that I haven't reached "stay away from crowds" levels yet. I have the blood of a much younger woman! Who doesn't want to hear that on their 63rd birthday. Yeah!! I ask if there is anything I can do, diet or supplement wise, to help keep my levels in good shape to minimize damage to my other organs. The answer - NO. Sigh.
Next up, PET results. Dr. Kocs is very happy with the PET results. The taxol is doing its job! My questions:
- Physiological activity: There are references throughout the document that certain organs demonstrate physiologic activity without mass. To my untrained mind, this is something we need to watch. To Dr. Kocs trained mind it means everything is normal.
- Atrophic left kidney: Multiple small cysts and multifocal cortical scarring. I tell Dr. Kocs I was hospitalized at 4 years old for a severe kidney infection. He indicates the PET findings are most likely a result of that trauma. He isn't worried as blood work shows kidney function, in both kidneys, is normal. Yay!!
- Pleural effusion/thickening in both lungs: The previous PET scan in early October indicated there was small left pleural effusion/thickening and trace right pleural thickening in the lungs. My research indicated this could be caused by asbestos and possibly lead to or even be cancerous. I was told this is something to watch but no worries at this time. The new PET shows no abnormal metabolic activity or suspicious lesion in the lung parenchyma; no pleural effusion, pleural mass, or pneumothorax is noted. Per Dr. Kocs, that says to him that the pleural effusion and thickening WAS probably cancerous since it is now totally gone. No biopsy was done. I don't care one way or the other. I am just happy lungs are normal now. Taxol kicked that one to the curb. Whoop!!
Where do we go from here? Six full months of Taxol. We are scheduled through February 8th, with PET on Feburary 3, chemo on February 7th, and visit with Dr. Kocs February 8th. We will schedule the remaining sessions after we meet with Dr. Kocs again. The last chemo with Taxol should end April 3rd. I'm not sure why they didn't mention that to me before. Actually, I think I do; they weren't sure how well the Taxol would work and probably did not want to tell me I could die in the next couple of months (Note: had I NOT done treatment, I was given 6 months, max 8 months).
I suspect it is because they are still quite worried about Voldemort. Although he is wounded (good!) we still have a ways to go. Dr, Kocs has discussed Voldemort with his colleagues because of his location. We have been in danger these past couple of months that Voldemort could damage or even break the carotid artery, in which case I would be dead within minutes. It is important that we wound Voldemort in a controlled manner and must be careful in how we break up that tumor, again, because of its location.
Dr. Kocs will refer me to a radiation oncologist after we finish Taxol to see if radiation is even an option in prolonging my life. It may/may not be because of the large area (upper left chest through upper left neck) we would have to radiate. He says the risks are high, again because of structures involved. I think he just wants to rule it out or see if any radiation can be done safely.
Dr. Kocs then confessed that he sent off my tumor biopsy for genetic testing. I told him Hannah busted him several weeks ago. Regardless, the results are in and we do have a new tool in our box as a result of the testing. My tumor has a PIK3CA mutation. This occurs in approximately 15 - 30% of breast, colon and endometrial cancer patients and is associated with poor prognosis and lack of response to certain therapies (that part sucks!). This means I am a candidate for target therapy somewhere down the road that consists of taking daily pills called alpelisib (PIQRAY - A PIK3CA inhibitor) in combination with a fulvestrant shot once a month. This will prolong my life. Side effects can be nasty, though:
- Severe Hypersensitivity (dyspnea, flushing, rash, fever, or tachycardia) - 0.7%
- Severe Cutaneious Reaction ( a prodrome of fever, flu-like symptoms, mucosal lesions or progressive skin rash) - 0.4% - 1.1 %
- Hyperglycemia ( excessive thirst, urinating more often than usual or higher amount of urine than usual, or increased appetite with weight loss); will appear within 15 days if it is going to appear at all; 65%
- Pneumonitis ( respiratory symptoms ) - 1.8%
- Diarrhea ( severe diarrhea, dehydration, and acute kidney injury) - will occur within the first 46 days; 7%
Looks like lots of monitoring will occur while on this drug. I think you continue this treatment until it stops working. Regardless, just one of the many tools in our box.
Chemo session #9 was unremarkable, other than they weren't expecting me, even though this PM called the nurse on Monday to make sure I was on the schedule for chemo on Friday. I was assured I will be. She lied or someone dropped the ball. I suspect the later. According to the nurses, it happens more often than they care to admit. Sigh!
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