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

Panic at the Disco

Nothing like causing a panic to bring you down to earth.

I haven’t seen Declan since the day we spent 2 hours (uncomplaining) at the eye doctor, and I was really looking forward to our visit today.

It’s beautiful out. I woke up feeling relatively good despite the lingering pain in my side from radiation. I didn’t need an oxycontin over night or this morning to function (text edit keeps changing oxycontin to oxytocin-please note I know the difference between a hormone and a narcotic). And I have no pain from yesterday’s biopsy.

All is well. Declan arrives all smiles and is delighted by his new batch of dinosaurs, and one Godzilla, my thank you gift. The first thing he says to me is “I’m glad you aren’t dead. I don’t want you to die.”

Me either, little man.

He and I had ordered 1000 pipe cleaners at the beginning of summer. We watch video instructions and follow along but you know I am the one who gets stuck making all the things he wants. This morning I had to improvise as there was no Youtube video instruction for an American flag. We/I managed to replicate one well enough…anything for my Prince Charming.

Then he requested pancakes. Easy peasy. We make, we eat. He runs in and pops the tv on while I start to clean up.

OH DEAR GOD WHAT IS HAPPENING TO ME???

I went dead white. Got light headed, thought my intestines were going to escape my body, while my stomach threatened to abandon ship. I will note, that I did not actually, at any time, get sick. I just felt like I was near death for fifteen minutes. It wasn’t until my face went numb, then my hands went numb, that I started to panic.

When I broke out in a cold sweat and everything went buzzy, I was afraid I’d faint…can I panic now? Not for myself, but I didn’t want to scare Declan. I managed to walk into the family room and tell him I wasn’t feeling well and to watch tv for a bit. I reminded him that Annette is across the street if he needed her. I grab my phone and my hands were shaking so bad I briefly thought that I should go get Annette. Then I texted an SOS to Chris and Kayla. “Come quick, I can’t feel my face,” is not the message you want from the nanny.

Declan is smart and capable. I went back in, laid on the couch and told him I might faint. He said, quite confidently, “That’s okay, I’ll ask Alexa what I need to do for someone who faints.” His instinct to take care of me makes me cry.

So now Chris and Kayla are both on their way. Kayla ratted me out let to Paul know I wasn’t well and he called concerned.

And all I’m thinking is “Fuck. Is this my life now?”

I get a stomach ache and set off a panic at the disco.

I know how annoying it is when I say I’m sorry for a situation not of my own making, but damn it, I’m sorry I’m putting everyone through this. Heck, I’m sorry I’m going through it. It doesn’t mean I don’t appreciate your worry, I do. It’s pure love and I’m grateful for it.

We’re all scared and worried, there is no way to not be. The truth is this is a serious situation, with serious repercussions. The treatments are not fun. Radiation and drugs cause as many problems as they solve. And as hopeful, and as determined as I am to see this though the long-term, the future is unknowable.

It’s the unpredictableness of it all that is most challenging. We have no idea which side effects will strike me, how severely or mildly, or how short or long lasting they’ll be.

It truly is a life that can only be lived one day a time.

However, I believe in making plans for the future, because they help one see past the current situation. Giving yourself things to look forward to, and to live for, can make a big difference in how you weather the storms chronic illness throws at you.

Lillian will be home Sunday, Tracey moves into her new house Aug 3rd, Kayla’s bridal shower is the 4th, her and Chris’s wedding is Sept 1st, Oct 3rd I’m hosting Sara’s baby shower, Oct 16th is our 26th wedding anniversary, I’m redecorating Eva’s and Lillian’s bedrooms (I seem to have a lot more company now).

I have a lot to look forward to.

I Feel Love, Donna Summer

Five and Done

It has been duly noted that not being updated is making some of you anxious. If you are ever in need of reassurance or just need to hear my lovely voice, for crying out loud, call me. You are not bothering me. I assure you, if I don’t want to talk I will not answer the phone.

After a lovely weekend with Sara and the Indoe family, I had a nice quiet Monday, with my 4th dose of radiation, and concluded that treatment with the 5th dose today. 

I was doing great until yesterday afternoon when I suddenly felt like I’d gone a few rounds with Muhammed Ali pounding the crap out of my left side.

The radiation, like many cancer treatments, tends to make one worse before it makes you better. And I was feeling much worse for wear when I woke this morning.

I popped an eight-hundred mils of ibuprofen, and a few hours later off I went to my last app’t. While I was there I asked to see the doctor since I was becoming apprehensive about my biopsy scheduled for Wednesday (we have to be in Boston at 6:30am) after being in considerable pain this morning, I feared tomorrow would be unbearable. 

Oxycontin to the rescue. I’m guessing that will be a recurring theme. 

Tomorrow being biopsy day means Paul and I will spend a lovely morning together. We do so enjoy this alone time. At least it is early enough to avoid rush hour traffic. 

Then at long last I have Declan Thursday! I haven’t seen him since the morning he spent with me at the ophthalmologist…geez, was that really only 4 weeks ago?…and I can’t imagine what he is thinking happened to me. 

I am well supplied with a new group of Dinos for the Dino Compound we started out back, and his new crafting medium, pipe cleaners. Which really means him saying “I’m going to make a turtle,” and then handing me everything. 

I’ll update you after my app’t with Dr Juric on Friday.  I should be starting the meds and learn more about the clinical trial, though I don’t think my participation can be determined until the biopsy results are in. 

Radiation Station

I met Dr. Jim McIntrye on Tuesday. He’s my new radiologist. Luckily for me I don’t have to go to Boston for my treatments since they have a lovely cancer center over in Danvers.

Jim is a chatty fellow. I learned more about his family in one meeting than I’ve ever learned about doctors I’ve know for decades. He’s also a hugger. Which is okay with me, huggers live longer and that is our goal.

Today I had my first dose. One down, four to go. Annoyingly they are at one o’clock in the afternoon. Cancer is very inconvenient.

A lovely young women reached out to me (I signed up to be notified of pertinent clinical trials) to participate in a fatigue study of patients taking Ibrance. It’s a seven week study that takes place over seven months that consists of questionnaires, wearing a special sleep watch and a Fitbit. Easy peasy, and they pay you small stipend, and I get to keep the Fitbit. This cancer thing is really paying off!

Dr Juric called to tell me they decided to biopsy the lymph node under my collar bone. Soft tissue is a much better material to type than bone. It shows up well on the PET scan even though they can’t feel it. Waiting for that app’t to get settled. And he said the insurance company had approved my taking Ibrance. I’ll see him end of next week and finally get going on the drugs. Woohoo!

I’ve had a migraine off and on for three days now. It seems related to the lesion on T8 causing me pain, the one they are radiating. It can take weeks for the full effects of radiation to take effect. Let’s hope I don’t put an ice pick through my temple before then.

I started driving again since the fluid has decreased a bit in my right eye. The distortion isn’t making me queasy anymore. I’m not sure I want to drive to Boston myself yet but the local roads I can drive in my sleep were no problem. I assure you my vision is clear and I’m not endangering myself or anyone else, it was merely a motion sickness issue.

Thank you all for messages of support and love. It means more to me than I could possible express. Huh, you shut me up. Keep up the good work.

The Cancer Chronicle

Seriously, after having a double mastectomy you start feeling a little secure thinking you are finally free and clear. Even though that surgery was at the behest of a recurrence of the breast cancer I’d been diagnosed with six years previously, I truly was surprised when the ophthalmologist broke the news to us – you have cancer in your eyes.

I’ll recap for those who haven’t read the post on Facebook. The rest of you feel free to skip ahead…

July 11, 2019 – edited for brevity.

The third week of May I began suffering terrible migraines and had a shadow in my right eye. I ended up at the retina specialist thinking I had a torn retina. After a full day of angioplasty, ultrasound and many many photos, it turns out I have lesions in both of my eyes. Tiny little tumors, specifically, metastatic breast cancer.

An MRI and a PET scan later reveal many (13?) small lesions (cancer) on bones in my shoulders, in lymph nodes under my collar bone and breast bone, on four vertebrae, and on my pelvis and femur, besides the lesions in both my eyes.

I am fortunate in that I have the best medical institutions at my disposal. I am now, thanks to Jen, under the care of a team of doctors at Mass General Hospital.

Do not believe the appalling statistics concerning MBC. I am not a statistic and they do not necessarily relate to me, or my prognosis. Please read Jay Gould’s essay “The Median Isn’t the Message,” which sums up my attitude on that subject.

No worries, I’m not going anywhere just yet.

July 15, 2019

That catches you up to this weekend’s turn of events. I began experiencing a constricting ball of pressure in my mid-back. After exploring the usually litany of ailments I suffer from, I came to the conclusion that the pain must be from one of the tumors.

Today’s visit with my radiology oncologist, Dr. Rachel Jimenez, confirmed as much. She has arranged for me to have a short course of radiation, five doses. I’ll be going to MGH Danvers, thankfully avoiding the drive to Boston for those six visits.

My medical oncologist, Dr. Dejan Juric wants to start meds asap. We are awaiting blood biopsy results. The clinical trial drug will have to wait til I have bone biopsy.

I’m not sure if it is being put off until I have the radiation or not, but we are still awaiting a biopsy app’t. They will be going in to my hip for that one. They need to type my tumor (previously ER+, HER2-) in case it has changed/mutated and they need to do a further study for a new receptor panel.

The two drugs I know I’ll be taking are Fulvestrant (Faslodex) which is a medication that blocks and damages estrogen receptors that is sometimes used in the treatment of metastatic breast cancer. And CDK 4/6 inhibitor palbociclib (Ibrance). I’ll tell you about the third clinical trial drug when I find out if I can take it. I’ll write more about the drugs when I start them.

I also have an app’t with MGH’s oncology ophthalmologist to check in and get him on my team. For now, I don’t need any other treatment but the hormone regime for my eyes.

Basically, I have an incurable disease that we’ll treat as a chronic illness. As each symptom appears, it will be evaluated and treated. Currently, I have breast cancer tumors that will be treated with a cocktail of drugs that could put me in to remission, or partial remission or in the least, halts the progression. The radiation will kill the lesion causing me pain.

Then we wait.