Reflecting on 3 Cycles of Piqray

We’re halfway through November, 2019, and I just picked up my fourth cycle of Piqray from the specialty pharmacy at my cancer center yesterday.  I also found out yesterday that my first PET scan since starting Piqray demonstrated that my cancer has had a partial response to the medication over the past three months. While I’m not satisfied with partial (because I want the whole enchilada), it’s definitely better than hearing progression again.

It’s a good place to be, three cycles in, to know that the medication appears to be working.  At this point, here’s an update of where I’m at with the experience of Piqray:

  1. Sticking to a low carb, keto-like diet has been helpful to support the efficacy of the medication and keep my sugar levels in the right range.  When I’ve cheated, my body has absolutely let me know.
  2. The nausea is here to stay, it’s low level, thank God, and manageable, but I do have to eat like a pregnant person.  Lots of little, protein rich, meals throughout the day and I keep my ginger ale handy.
  3. I spent a lot of time trying to figure out Metformin and how to tolerate Metformin and then, my medical oncologist ran across thisletter to the editor in the New England Journal of Medicine and now I’m on Jardance instead.  The side effects seem generally the same but I’m still adjusting to a new medication.  I’ve reached out to Novartis to see if theirrecommendations will change and haven’t heard anything yet.  
  4. The rash so many people struggle with has not shown up, but I do still have a lot of dry skin.  I pretty much have the skin on my face under control, but inside my nose is still super dry and easily irritated.  I’m still taking Claritin every day and will continue to do so–that’s also probably contributing to the dryness in my nose!
  5. Piqray is still a very weird name.

I’ve a meeting planned with Novartis next month at the San Antonio Breast Cancer Symposium, so let me know if you have any questions about Piqray and I’ll be sure to pass them along and then get them answered and disseminated.

Piqray, Metformim, Nausea and B12

I’m about halfway through my second cycle of Piqray. We added Metformin to help control the known side effect of hyperglycemia, or high sugar. Despite the fact that the hyperglycemia was under control, the nausea was not under control.

I remember experiencing a constant low level nausea while pregnant with both of my little guys. Whether it was the hormones, the fact that both of my boys had a full head of hair, or just the fact that I’m a woman who was carrying a male child, I was freaking nauseous throughout both pregnancies.

Having the nausea with no baby at the end of the pregnancy or literally any light at the end of the tunnel is not copacetic. Not at all.

I didn’t tolerate Zofran well during chemo, so I’ve been taking Kytril/Granisitron when necessary but I can only take it every 12 hours. I asked my doctors to look at other options, but my insurance wasn’t cooperative and every medication carries more side effects and contraindications with the other medication I’m already taking.

So, what to do?

I saw both my acupuncturist and my allopathic neurologist and between the two of them, we discovered that my B12 levels were basically nil. I already knew that I was struggling to keep B vitamins absorbed, but I didn’t know that Metformin blocks the absorption of B12.

What?!

After an injection of B12 and a new supplement that includes all of the B vitamins, my nausea is low enough that I don’t need to take Kytril or anything else. Odd moments, movements, or smells can still resurrect the nausea. Kinda like being pregnant, still.

But, so much more manageable. I’m so amazed that something so low tech and without side effects has helped. Before anyone says anything, yes, I’m being careful and my doctors are monitoring everything. I completely realize that vitamins can be harmful in too large doses.

For now, I’m just enjoying some food again, without the nausea.

Palliative Care

Palliative care is something I never knew anything about until my terminal diagnosis. Why would I? It’s not something that is common knowledge or commonly needed until it is. Before my diagnosis, I thought of palliative care as a subset of hospice. I’ve since learned that many people view palliative care in this category. As a result, there are many misconceptions since palliative care and hospice are very different.

Let me first share my own experience. I was initially diagnosed in Orlando, where I used to live and I completed my active treatment there. My period of active treatment consisted of four (4) surgeries, IV chemo (the red devil) and radiation. I discovered I was Stage IV after the first several surgeries and initial chemo infusion, so the remaining treatment changed substantially after that discovery. My “active treatment” extended from March, 2017 through and including October 2017.

As soon as I hit the plateau of the end of active treatment and the beginning of targeted therapy, we moved from Orlando to Miami. There are a lot of reasons we chose to move and one of the less pleasant aspects of the move was having to find a new medical team. My new medical oncologist referred me to one of the pain management doctor at my new cancer center and that pain management doctor happened to also be a palliative care doctor.

I love my palliative care doctor and her team.

I don’t say that about all of my doctors. Frankly, most of the medical treatment I receive is often painful, difficult, anxiety-producing, and time consuming. I hate to wait and I wait in waiting rooms an awful lot.

I never wait for my palliative care doctor. She runs on time and she, and her team, spend a lot of time with me. They ask me about all kinds of symptoms, about my quality of life and they LISTEN. While they have to document my visit with them similarly to my other doctors (they all have to bill the same insurance!), they look me in the eye, they tell me what they are doing. If I call my palliative care doctor’s office, I get right in. I don’t always talk to a person right away, but they always return phone calls. Quickly too.

Once or twice, I encountered issues with medication, with putting together the big picture of dealing with all of my doctors and advocating for my quality of life. My palliative care doctor stepped in and interfaced with my other doctors.

I don’t know what other people’s experiences with palliative care are and I suspect that part of my experiences are directly related to the people involved, not just the discipline, but I know that’s not the entire story. So much of our medical system has become about moving the patient through as quickly as possible. I get that doctors have to make money; however, as a patient, I need to know that my medical team cares about me and my concerns.

I know that my palliative care team cares about me, cares about my pain, cares about who I am as a person.

Everyone with a terminal or even a chronic diagnosis should pursue the possibility of palliative care. It’s not for one set of patients, it’s for anyone whose medical issues interfere with their quality of life. Seeking out and maintaining my visits with my palliative care team is part of my commitment to self-care.

After all, everyone deserves to have their quality of life be a priority to someone.

My Fourth Week on Piqray and Faslodex

This week has been a doozy. Lots of things going on involving cancer and not involving cancer, losses and victories, sadness and celebration. This is becoming normal for us, although I can’t get used to the amount of my friends who are dying.

Anyway, here’s my list for this week …

  1. I’ve added back in some carbs after reading some suggestions and I frankly feel much better. Sugar has stayed pretty stable thus far.
  2. The nausea has remained rather consistent, which hasn’t been fun. It feels like being pregnant and I think my go-to anti-emetic, Kytril, since I’m allergic to Zofran, isn’t working well for this type of nausea. Definitely something to talk to my medical oncologist about.
  3. No rash, but my face is so dry. My sister has been helping me to find good moisturizers to use and I’m constantly slathering myself in cream.
  4. And another note, my poor nose is so dry that I’m getting regular nosebleeds too.
  5. A side effect of the nausea and diarrhea I’ve been experiencing is that I’ve lost some weight. Not that I really needed to loose any, but my clothes fit a bit differently and that isn’t a bad thing.
  6. There was some weirdness this week with the pharmacy at my cancer center. There were two scripts in the system and despite my doctor’s nurse practitioner discontinuing the lower dose and renewing the original higher dose, there was lots of confusion.
  7. I’m not very patient with confusion. It feels completely wrong that the medical professionals get things so mixed up and I have to keep checking up on things.
  8. Final loading dose of Faslodex is today, along with some bloodwork. Tumor markers haven’t changed much but they weren’t super high to begin with since we caught the progression early.
  9. Some of the women I know on Piqray are really struggling with getting it covered by insurance.
  10. Thankful for the good friends I’ve made who have helped me with connections to people in the right places.

This weekend is going to be super fun and I’m looking forward to focusing on loving on my boys, seeing some dinosaurs, and some special time with my sweetie.

My third week on Piqray and Faslodex

Outside of a little storm we had this past week, things have smoothed out with the transition to the new meds. I’m super thankful that we didn’t sustain a direct hit by Dorian, but there are many other people who didn’t fare as well. We’ve been collecting a variety of aid items for the people in the Bahamas all week and if any of you, my readers, want to help, let me know.

Here’s my list of updates from this week’s experiences with the medication …

  1. The Metformin CR has kept my sugar under control quite well and the other side effects have become more manageable.
  2. Any time I succumb to my love of bread and carbs, I see a corresponding increase in my sugar. So, it seems the diet I need to utilize is one that cuts all carbs out.
  3. Fun fact, grapes have a LOT of carbs. Who knew?!
  4. I do have some extremely dry patches of skin, on my face of course.
  5. No rash from the Piqray, but I do get redness where the Faslodex injections are inserted.
  6. Having food in my stomach is a must when I take Piqray. The nausea is sooooo much better when I remember!
  7. Claritin is a much more tolerable anti-histamine than Zyrtec for me.
  8. Still not entirely sure how medical marijuana interacts with Piqray but I’m following the same protocols as when I was on Ibrance and that seems to be working.
  9. Children stuck indoors during a hurricane literally bounce off the walls.
  10. Friends are a necessity!

Happy Friday, everyone.

My second week on Piqray and Faslodex

Last Friday, my sugar spiked to 268 😳 and I had to stop taking Piqray, while starting Metformin, until we got the sugar under control. That set up a truly miserable weekend as I was not aware that I would get ALL THE SIDE EFFECTS from Metformin; truly, it was miserable. Then, I saw my new endocrinologist and I learned a whole lot more.

Many people (maybe as many as half) of those who take Metformin are miserable. The solution? Metformin CR (continuous release). Seriously?! My fault for starting on a Friday when I couldn’t get to anyone over the weekend, but I’m still flabbergasted that this is what happens and I had no idea.

I’m the first person to be prescribed Piqray in my medical oncologist and endocrinologist’s practices. This is an odd position to be in. My medical oncologist has asked lots of questions about what people post in the online Facebook group. I’m literally only the second person at my cancer center to be on Piqray. My endocrinologist kept asking, “but what is the mechanism within Piqray that causes sugar to spike?” Hopefully when he figures that out, we can all benefit from it. For now, I’m taking the Metformin continuous release and I’m back on Piqray at the highest dose.

While my doctors are not ignorant of the psychological affects of the struggle to get the dosage right for me, I made sure to tell them how awful the weekend was. Not only was I feeling miserable, but my whole family had major PTSD reactions. I was absent a lot from family gatherings during 2017 during chemo and surgical recovery and this past weekend felt a lot like that.

For me, other than feeling miserable physically, I was also in the midst of a minor (bordering on major) panic attack most of the weekend since I wasn’t taking any cancer medication and the jury was still out on whether I could still take Piqray and at what dose. I get that two or three days probably didn’t do much, but being unprotected by any medication caused serious anxiety.

This cancer stuff sucks. All the way around. It’s hard on everyone.

And now for my second set of Faslodex shots … at least the nurses get to catch glimpses of my tattoos. 😉

My first week on Piqray and Faslodex

I started Ibrance and Letrozole in August of 2017. Perhaps it is fitting that it was almost two years to the day that I had to change my regimen because of progression. Yes, it’s a mild progression and I’m clinging to that. So, I’ve now been on Piqray and Faslodex for a week and I’ve learned a few things that I would like to share, in no particular order.

  1. Faslodex shots are not fun.
  2. Faslodex side effects are more tolerable for me than Letrozole, but the first few days were a bit more intense than I was expecting.
  3. It is absolutely necessary not to be standing on the leg where the shot is being administered. Thank you to all of the people who warned me about this!
  4. Faslodex shots (there are always two) must be administered in the top of one’s gluteus maximus and always at least room temperature.
  5. Faslodex shots are not defrosted until one is in the infusion center, so plan for an extra 45 minutes unless you make a deal with a nurse.
  6. Zyrtec makes me drowsy and irritable.
  7. Food is a must when taking Piqray.
  8. Piqray is a weird name.
  9. Piqray needs new packaging that is actually child proof!
  10. Why couldn’t they just send one pill per day?!

There you have it, my ten new pieces of information as I embark on this new medication combination. Still trying to figure out drug interactions when it pertains to CBD and THC. Never a dull moment but this change has been particularly disruptive, probably at least partially because it has been a while since a change was necessary.

I’m still angry at my cancer. I’m still upset that it took me so much effort to get these meds.

And now I’m headed to yoga.