Dr. Plimack, the oncologist from Fox Chase who has been running my post-RC scans, called me this morning. I'd emailed her on Monday night, after I spoke with Dr. Apolo, updating her on the PET and biopsy results, and asked for her opinion on whether I should get chemo or some other treatment, or do nothing.
She told me that it was unusual to have a single positive node that was so high in my chest, and so small. She said that having whole-body chemo was probably not a good idea, for three reasons: 1) Platinium based chemo did not work for me before, so there is little reason to think it would work again. 2) There is very little evidence that adjuvant chemo helps extend life for those with mets BC, and in the meantime, it can make the days that remain more miserable. In other words, she doesn't think that chemo will cure me of mets BC, and probably won't slow the progression either. 3) My progression to distant mets has been relatively slow -- 16 months since the nodes outside my bladder were detected by CT scan, and 15 months since my RC. That suggests that maybe my additional mets progression may not be that fast. She also said that the micropapillary bladder cancer that I have does not necessarily progress faster once it's mets -- it's just the most aggressive to gt out of the bladder, since it thrives on bladder muscle tissue. Once it's out, micropap mets patients don't die any faster than normal mets BC patients. This was news to me.
Dr. Plimack said that the decision of whether to have adjuvant chemo is very much an art, and not a science. It varies with each patient, and often with each doctor. Dr. Plimack's philosophy is to not do chemotherapy prophylactically, and in the absence of good evidence to do something, don't do it.
She said that dose dense MVAC is very hard on the system. She's never had patients tolerate more than 12 does. I don't want to be sick as a dog with a hard type of chemo if there is little evidence that it works. She said that triple chemo with a taxene can be tolerated longer, perhaps as much as a year, but the evidence for that is limited.
We also talked about clinical trials. She said that clinical trials require a measurable disease (e.g., a node with a short axis of 1.5 cm or larger), so they can measure whether the experiment worked. Makes sense: with no cheese, no one knows why the mouse wandered through the maze. She suggested that we continue with the scans and see if more nodes are enlarged. We wouldn't need another biopsy, because we already know I've got systemic cancer in my lymphatic system.
She suggested that I read up about MK-3475, an experimental anti-PD1 antibody that Merck is researching. It's also called lambrolizumab. According to this article on Cancer Commons, the drug blocks activity of the programmed
death 1 (PD-1) molecule, an immune checkpoint receptor found on a type
of white blood cell called a ‘T cell.’ T cells fight infections in our
bodies and also facilitate the body’s attack on tumors. The PD-1 molecule on T cells interacts with another molecule, the
programmed death 1 ligand (PD-L1) that fits with PD-1 like a lock and
key. This interaction helps to modulate the immune response of T cells
to various stimuli, including infections. PD-L1 is found on cells
throughout the body, but tumor cells can also express PD-L1, resulting
in a dampened response of the immune system to the tumor. Anti-PD1
antibodies block the interaction between PD1 and PD-L1 to boost T-cell
activity in response to tumors.
MK-3475 has shown promising activity in other types of cancers, especially melanoma. Here is a link to a clinical trial that is testing MK-3475 in patients with progressive locally advanced or metastatic carcinoma of any type. Dr. Plimack said that the drug is given by IV every two weeks. Preliminary studies have shown that some patients have tumor shrinkage that may be sustained even after the trial treatment ends.
As I type this, I am mentally rolling my eyes at all of the clinical trial choices. Bladder cancer has been studied for so many years, with so little success. There hasn't been a new drug approved for bladder cancer in over 20 years. It's such a complex beast, and so unlike the more straightforward cancers like breast or prostate cancer. Maybe one of these clinical trials might be the magic bullet for bladder cancer, but it's highly unlikely. I'll probably participate in one or more trials, but I'm not holding my breath. I doubt if I'll find cheese at the end of my maze.
I am amazed every time I read. You gather so much information and research so much. It's very inspiring. So many people don't take the time or don't know how to find so many answers as you. It's great that you share so much. I truly love your attitude about all that has and is happening. It's wonderful that all of your doctors are going to work together. I feel that if Heavenly Father doesn't need you on the other side yet, they will come up with the correct brew and you'll be a miracle. It's all according to what Heavenly Father needs. You are in our prayers, daily.
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Jamie and family