Uncomfortably Numb

Last week, July 26th, I had an appointment with my medical oncologist, Dr Juric. We made the final decision that I would participate in the clinical trial. The papers were signed and this Friday I completed the preliminary testing needed to get approval from the drug company.

Tests included a urinalysis, blood work, a CT, and an eye examine. They sent off the biopsy slides to Belgium, where the parent company of the study is, and now we wait. Hoping this will be resolved by Friday 9th and I can start on the meds (two pills, one injection).

We also talked about the first round results from my biopsy. It turns out I have at least four mutations/alterations, none of which affect my treatment choice. The amplification is medium on three of them, meaning none cause me concern about postponing treatment while all the paper work and tests for the study are processed. If PIK3CA E52K had a higher amplification I would have forgone the study and started on a drug targeted to that mutation. The other two, FGFR1 and MYC don’t have approved targeted drugs yet though they have clinical trials. The fourth has an unknown significance.

We also discussed the side-effects of the triple whammy drugs. The first two are standard treatment which I would be getting anyway, Ibrance and fulvestrant.

Fulvestrant is a selective estrogen receptor degrader or downregulator (SERD) is a type of drug which binds to the estrogen receptor (ER) and, in the process of doing so, causes the ER to be degraded and thus downregulated.[1] They are used to treat estrogen receptor-sensitive or progesterone receptor-sensitive breast cancer, along with older classes of drugs like selective estrogen receptor modulators (SERMs) and aromatase inhibitors.[1] The most common side effects (occurring in more than 10% of people) include nausea, injection site reactions, weakness, and elevated transaminases.

Ibrance is a selective inhibitor of the cyclin-dependent kinases CDK4 and CDK6.[1][2] Palbociclib was the first CDK4/6 inhibitor to be approved as a cancer therapy.[3] In the G1 phase of the cell cyclemammalian cells must pass a checkpoint, known as the restriction point “R”, in order to complete the cell cycle and divide. CDK4 and CDK6 complex with cyclin D drive the phosphorylation of the retinoblastoma protein, Rb, which allows the cell to pass R and commit to division.[4] Regulation of one or more proteins involved in this checkpoint is lost in many cancers. However, by inhibiting CDK4/6, palbociclib ensures that the cyclin D-CDK4/6 complex cannot aid in phosphorylating Rb. This prevents the cell from passing R and exiting G1, and in turn from proceeding through the cell cycle.[4]

A majority of patients taking palbociclib experience neutropenia, a condition where a patient has an abnormally low number of neutrophils. This side effect impacts the immune system, and is thus likely responsible for the second most common side effect, infection.[13]

You will be hearing more about that as my paranoia and cold season approaches. I’m thinking of installing one of those UV sterilizing lights on the front door.

The third drug is GDC 0077 which inhibits or halts the growth of tumors. Here is the actual study, I’m in ARM E.

PI3K inhibitor GDC0077 binds to and inhibits various members of the PI3K family, including activating mutations in the catalytic alpha isoform PIK3CA. PI3K inhibition prevents the activation of the PI3K-mediated signaling pathway and results in the inhibition of growth and survival of PI3K-overexpressing tumor cells. Dysregulation of the PI3K signaling pathway is frequently associated with tumorigenesis and tumor resistance to a variety of antineoplastic agents and radiotherapy. PIK3CA, which encodes the p110-alpha catalytic subunit of the class I PI3K, is frequently mutated in a variety of cancer cell types and plays a key role in cancer cell growth and invasion. 

Well, that was a lot of technical stuff.

I mentioned Friday that my entire left side had gone numb. No worries is didn’t last long, about three hours off and on. Then once, very briefly today after I’d been active much of the day. I believe it was the results of my laying on my side and aggravating the radiation site. Which, while very much improved since earlier in the week, is still uncomfortable, causing heartburn and restricting certain movements.

I did have a good week overall, since Lillian and I were was able to spend two days with little man. And Lillian and I have also been able to spend a lot of time together before she goes back to school in a few weeks.

Senior year, WOOT!

Eva has moved into an apartment in Arlington, for now. She’s exploring grad school options which is exciting.

No app’t till Friday, yay! Hopefully, I’ll have Monday and Thursday with Declan. Lillian and Paul are driving up to Vermont on Friday to pick up furniture she is inheriting from Zoe and Neil. And Paul is slowly but surely making his way through the front and upstairs hall repair/repaint job.

Till the next update…love you all.

Info is mainly from wiki and cancer.gov


  1. I agree with Cindy. You DO sound like a doctor and you do become an expert when you have a serious disease. More importantly, you have to be your own advocate because no one knows your body better than you do. I hope the numbness has stopped for good.

    Love you too!

  2. Wow, you sound like a doctor. When you have a serious disease, you become an expert. Can’t wait to hear how the trial goes.

  3. I am glad to hear the numbness is gone. Love you back!

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