Experimentation Update, June 2020

As some of you are aware, I embarked upon an oncologist directed experiment of one (1) person (me) about three (3) months ago when we added Kisquali (a/k/a ribociclib, a CDK4/6 inhibitor) to targeted therapy, Piqray (a/k/a Alpelisib), along with Faslodex (a/k/a Fulvestrant) and a rather lengthy list of medications to address side effects and supplements, etc. If that sounds like a lot, it is. I’m still on the highest dose of both targeted therapies, which has been a lot on my body. However, we had to do something different since the PET three (3) months ago showed that all of my mets (and I have many many bone mets) were becoming significantly more metabolically active, a harbinger of progression to come. My doctor didn’t want to let go of Piqray as my second line of treatment because I have its target, the PIK3CA mutation.

Well, my first PET since starting this regimen was the 8th of June and the results are pretty freaking amazing. The report includes phrases like …

  • interval resolution
  • multiple lesions … most of which do not demonstrate … abnormal uptake
  • significant interval improvement
  • mild residual metabolically active metastatic disease
  • no evidence of new metastatic osseous lesions
  • no evidence of soft tissue metastatic disease

Frankly, three years into this experience with Stage IV metastatic breast cancer, this is the best scan I’ve ever had. Many of my last tests included phrases like “innumerable lesions” and “high risk for fracture” and “pathological fractures” and “compression fractures” and “increased metabolic activity” and “new metastatic lesions.” I watched for stability, at the measure of metabolic activity, the SUV values, to inch lower. Every report, I pored over, finding some measure of comfort in the phrasing and parsing out the meaning of each word.

This is NOT a good idea as different radiologists with different styles used different language and it drove me nuts trying to figure out if I should read between the lines. Please don’t do that to yourself, I would make myself a little crazy each time. My doc kept telling me to keep my wordsmithing out of the medical reports, that I wasn’t reading a legal brief.

Many doctors use the phrases No Evidence of Disease (NED) or, mostly for those of us with lots of bone mets that show some activity while dying and healing, No Evidence of Active Disease (NEAD). When I asked my doctor if I qualify for either of these labels, she told me not yet … and then added, but you are the closest you’ve ever been. That’s the first time she’s told me that. I could hear the broad grin in her voice, another first.

It has taken a lot to get here, a lot of blood, sweat and tears, not all of them mine. I haven’t been alone in getting to this point, it has taken a gigantic team of medical professionals, friends and family. This victory is theirs as much as mine and I know that I don’t always remember to acknowledge that. I would not be here outside of my village and you, my readers, are part of that village in your own unique way.

And yet.

We celebrate today, knowing that in a month, we could be back to progression and new lesions. Friends got good news this week and friends got very bad news this week. The rollercoaster of this experience is constantly teaching me that today is what we have, today is what we need to focus on and today is what matters.

Medical Update, ONJ

About three weeks ago, I started to feel pain in the lower left quadrant of my mouth, tooth #18 to be exact. I’m one of those weird people with more alkaline than acidic salvia and at age 41, I’ve still never had a cavity. (knock on wood). Braces, yes, twice, and I struggle with tarter development, but no cavities. I can’t take any credit for this since my husband points out regularly that I’m pretty lazy about caring for my teeth, something that has to change now.

Once I’d had pain for a few days and it kept getting worse, I scheduled an appointment with my dentist. He knows all about my metastatic breast cancer diagnosis and the X-rays showed that I still don’t have a cavity. I love my dentist, he’s a straight shooter and doesn’t have much of a poker face. Even with the mask on, I saw his eyes widen. He quickly told me that he knew what was going on but had literally never seen it before in real life, just in his training. I was referred to a few oral surgeons and he offered to write me a prescription for the pain; at the same time, he chided me a little since the pain I was and am feeling apparently is so far beyond the pain of a cavity that I should’ve known something else was going on. Just one more weird experience related to my pain tolerance.

After some phone calls and a little begging, with a few tears, I had an appointment fairly quickly with THE oral surgeon with significant expertise in the affects of bisphosphonates on the jaw bone. He confirmed my suspicions, I have osteonecrosis of the jaw (ONJ) in a fairly typical presentation in a very typical spot. For anyone who is super curious, here is a general overview of the diagnosis and some of the related issues/treatment. One distinction I’ve learned is that I have medication induced ONJ, which behaves differently and is often differently treated from ONJ arising from a different source.

My understanding of the situation as it pertains to me is this:

  1. Zometa, the bisphosphonate that I get monthly via an infusion, affects the death and replacement of cells, both healthy bone and cancer, in my bones. The result of Zometa’s interference in this chemical equation means that the cancer growth is inhibited and there a “sealing” or “coating” affect as well, which means that the cancer is trapped inside the bones and is unable to spread to my organs, something I’d like to keep as long as possible. I do know that the scientific explanation is much more complicated, but this is the best way I can explain this process in words that I understand.
  2. The jaw bone is something like ten (10) times more sensitive than any other bones in the body to this medication. I’ve had TMJ in the past and I believe that some of the migraines I’ve gotten at various times in my life has been related to jaw pain. All of the bones and systems are super close to each other in the head and referred pain is definitely something I’ve struggled with.
  3. Because of this sensitivity and the years of getting the medication monthly, a part of my jaw bone has died. Breaking down the actual word helps: osteo = bone and necrosis = death. Eeek, there’s something very very strange about knowing a part of your body that is supposed to be alive is dead inside your body. Weird Weird Weird.
  4. Once that part of the bone died, the gum covering that part of the bone died as well and is gone — bleh, I probably swallowed it, yuck. No blood flow to the bone means that there is no blood flow to the gum. Therefore, a gum graft to cover the bone that is open to the inside of my mouth won’t work because whatever is placed on top of the dead bone will die too.

I keep learning such strange things about cancer, cancer medication, and the side effucks. For now, the treatment for me for my ONJ is antibiotics. Several to start with and then I’ll be on a low dose antibiotic for so long as I have a jaw bone. Thinking that’s a pretty necessary bone, so I’ll be taking it for a while. I’ll be following up with my fancy expert doctor regularly and we will likely have to adjust my Zometa treatment but it appears that I can stay on it, albeit perhaps at longer intervals, probably moving from monthly to quarterly.

Before I close this post, I wanted to give you all a glimpse into the experiences of living with this disease that I don’t always write about. When I sit down to write blog posts, it’s usually in the aftermath of an experience once I’ve had the chance to figure out what I’m going to do about it and when a plan is in place. That isn’t always reflective of my initial reaction and I wonder sometimes if I’m giving people a false sense of the experience or how I’m dealing with it.

When I saw the exposed bone inside my mouth a few weeks ago, I knew what it was right away. Yes, I realize I’m not a doctor and my self-diagnosis doesn’t mean much of anything; at the same time, I’m fairly well informed about the medication I’m on and the side effucks to look for. I didn’t do anything other than deal with the pain for a few days while I dealt with the emotions that came along with it.

More than anything else in the last three years, finding out that my jaw bone was likely dying felt like imminent death to me.

Why?

This may seem convoluted, but having to slow down or stop taking Zometa felt to me as though the mets would immediately leave my bones, take up residence in a necessary organ for life, and kill me quickly. Too many of my friends die each day for me not to think the worse possible outcome when cancer takes over a necessary organ. The intense pain I’ve been dealing with, which has been steadily increasing did not help, the fact that I’ve had to be on oxy to handle the pain when I’d been able to wean myself off, the fact that the jaw pain caused multiple intense migraines that lasted for several days, and the fact that I’ve struggled to sleep as a result of all of those things, well, it is not a recipe for thinking clearly/rationally.

Once I’d had some time to sit with these feelings, do my research and get to an expert, I’ve been able to be more logical, more practical, more of a realist and deal with the logistics of treatment and visits and medication and adjustments.

Living with a terminal disease that loves to throw curveballs at all times is not easy, it’s messy and it’s emotional and it’s tragic in so many ways. That is not to say that I don’t have hope, that I don’t use my energy to find better and best ways of treating the disease and the consequences of that treatment. It’s just that the wallowing, the dark places, and the anxiety is also part of living with a terminal disease. Sometimes it’s more wallowing than progress; other times, the opposite.

At the end of the day, there is nothing special about walking this road. I am human and dealing with pain and nausea and pain and vomiting and more pain wears on me. Thinking that I’ve reached a plateau and I can breathe a little only leaves me open to the disappointment of being thrust back into the hopelessness and helplessness of a new life threatening issue that must be addressed. Yes, I caught my ONJ early and we’re going to treat it, but ONJ is something that could kill me if not addressed. I’m not sure how many more potentially terminal diagnosis one body can handle.

For today, I know that we have the rough outlines of a plan, with more details to be fleshed out, I have medication that will help my pain, and I believe that I have the right team members in place. Tomorrow, it may be an entirely different situation. I’m learning to be more comfortable with this ever changing life with MBC and I can say that I will die of this, but not today.

Experimentation Update

I’ve now been on the experimental combination of Piqray (alpelisib) and Kisquali (ribociclib) for an entire 28 day cycle and a handful of days. I missed some doses in the first cycle of Kisquali when I was hospitalized and in my efforts to figure out the best time to take both. No PET yet to determine how well this combination is working but we have still been following my tumor markers.

For me, my doctor checks the tumor markers with a test called CA27-29. What this test measures is the amount of a type of protein called MUC1 in the blood. I don’t fully understand how the level of this protein increases when the Mets are getting more active and I do realize that many doctors don’t follow tumor markers because they aren’t always reliable for all patients. For me, though, they’ve been on point every time for the past 3 years so I do watch trends pretty closely.

Back in August of 2019, when I had two new mets in my bones, my tumor markers had been steadily rising. When I started Piqray, they came down super fast (a fact we celebrated!) and remained low while the initial PET showed a mixed response. The markers had been steadily rising over the months between PET #1 on Piqray and PET #2 when we saw that the Mets were getting more metabolically active and lighting up on the PET. Not the direction we want them to go, which has been the source of a lot of anxiety recently.

Now that we added Kisquali, we’ve hit a plateau. My tumor markers have been within one or two points of each test for the last two months or so. Usually this means that the medication is at least stopping the new growth; at the same time, the fact that the markers aren’t dropping is still some cause for concern. My med onc is not concerned enough to do a PET scan earlier than June, especially since we’re limiting my doctor/clinic/hospital visits as much as humanly possible. So, for now, we wait.

Have I said enough how much I HATE to wait!?

The biggest side effect I’ve been dealing with on this combination has been nausea. Piqray caused a low level nausea that I could manage. It literally made me feel pregnant so all the usual adjustments for pregnancy (I was nauseous all through both of my pregnancies) worked ok. Contrary to the 60 pounds I gained with each pregnancy (don’t judge!), I’ve lost about 30 pounds since August. That means I currently weigh around what I weighed when I was in middle school. Not exactly what I expected! My appetite has been affected as well as having to adjust to a modified keto diet since I’m still trying to stick with a mostly raw vegan diet.

When we added Kisquali, the nausea turned into vomiting and I’ve had some trouble managing it. I started taking Piqray in the morning and Kisquali at night and that seemed to help. I’ve also realized that the third week of Kisquali when the toxicity of the drug is at its highest was miserable. I was on Ibrance for 2 years (same class of medication) and I had forgotten about how that last week before the break being that bad. My family reminded me that it was and so we’re watching that a little closer.

Some silver linings of this social distancing thing in the midst of this experiment …

  1. I’m not as active first thing in the morning and I’ve not had to take as much pain medication. I’ve been able to nearly eliminate the oxy, which makes me so very happy! I still have a supply just in case and I’ve had to take it at times. I like being able to adjust some of my meds according to my activity level and how I’m feeling.
  2. In addition to not being as active, I’m not climbing the stairs as much. This has to do with homeschooling and all of that but also that my husband and mom have been around all day to remind me to take the chair lift or allow them to help. My knee pain is pretty much gone and my hip pain is so much better.
  3. Since I can’t go to our community pool to do my physical therapy exercises, I’ve been soaking in Epsom salts baths more often. The inflammation in my legs around the sites where the titanium rods were inserted are quite a bit better.
  4. I really like the telemedicine option. No rushing to get to appointments, long waits in the waiting rooms or frustration with support staff. I get on the application and immediately talk directly to my doctor. Have I mentioned how much I hate waiting!?
  5. Sweet family time.

Overall, I’d say that the experiment is going well. Challenging, definitely, but it will all be worth it when the PET in June shows a good response. Even if it doesn’t, my doctor and I have been talking about other options we have. I have a list of several clinics I’ll be consulting with as soon as travel bans are lifted. My doctor had already wanted me to fly up to Sloan Kettering to meet with a doctor she respects there. That’s on hold but I’ll make it happen when I can.

Despite all of the craziness of this quarantining and homeschooling and my husband working from home, I’ve found ways to engage with my communities. I’ve done some letter writing and I’ve sent many many cards out. I know more about Zoom and Microsoft Teams than I ever thought I would (and so do the kids!). Some days are more difficult than others, certainly; at the same time, we’re making the best of it and enjoying what we can. These are memories that we will never forget!!

Medical Treatment during a Pandemic, Part II

My first post, Part I, was all about my admission to the hospital after I’d been tested for COVID-19 and how weird it was. Medical treatment during a pandemic is not fun at all. Impersonal medical facilities are even more so when everyone you encounter is scared of catching something from you, the patient. Plus, the lack of family members means that vulnerable patients are left alone, without advocates.

Just to be clear, I’m not suggesting that any of the amazing people working in the medical profession don’t care or don’t want to help, it’s just that they have so much on their plate already. For those of us who are stage IV, we have to access the health care system whether we really want to or not, so I notice different things.

One thing that jumped out at me from the beginning of my hospital experience is that no one that I dealt with had matching equipment/scrubs/etc. Each person was wearing a hodgepodge of personal protection equipment (PPE). One doctor had a makeshift shield over his mask that didn’t fit and kept sliding down to smoosh his nose. It’s a little difficult to maintain a respectful facial expression and tone when someone looks completely ridiculous.

One of the surgeons at my cancer center wrote an article about how oncology practices are affected by this pandemic. You can access the article here. She discusses the important question: “What does the Hippocratic oath mean during a pandemic?” This is a question that I think our entire country is grappling with and I haven’t heard any good answers that we patients can rely upon.

The New England Journal of Medicine published guidelines to be used when supplies become scare and must be rationed. The guidelines are meant to alleviate the burden of having to make such difficult decisions that result in life or death. I can’t imagine the burden that a medical professional who has sworn to do no harm will carry when so many are dying.

So what does all of this mean for me and my colleague who have MBC?

First of all, I’ve seen some recommendations from oncologists on Twitter not to reveal that those of us with stage IV are terminal. The thought process is that we patients should not volunteer such information when it would be used to categorize us to the wrong category, that of people too sick to be saved. I’m not sure what I think about this suggestion. The hospital where I seek out treatment is part of the network that includes my cancer center. I can’t escape the reality that my diagnosis is indeed terminal.

Secondly, watching how the people who were the sickest had the most difficult time communicating their wishes has me super concerned. Without family members close by, how do we communicate our wishes if we’re too sick to talk. I don’t have all the answers, but I do have a potential solution.

Road iDs have been developed for bikers and hikers who often find themselves in unfamiliar settings.

This metal piece will fit around the band of my Apple Watch. It has some demographic info and my emergency contacts on the front. On the back are codes that lead an emergency room worker or paramedic to go to a website where I can upload documents like my advance directives. This same tool comes as a bracelet or an anklet. Such a simple yet profound options to ensure that there is a chance my wishes would be followed if I can’t communicate.

I did test negative for COVID-19 and I’m thankful that I don’t have to deal with the symptoms at this point. My heart goes out to the families who have lost loved ones, to the health care workers on the front lines and all of us social distancing. This is a difficult time and life will likely look very very different on the other side of all this.

Metabolic activity

As far as I understand it, increased metabolic activity creates higher SUV value on a PET scan. In more understandable terms, the places where there is more activity shows up brighter on the PET scan. Brighter images on the PET scan means the cancer has “woken up” or is starting to wake up; that the cancer is no longer held in check by current medication regimens.

That’s what showed up on my PET scan on Monday.

The new lesions from August, 2019 when the cancer outsmarted Ibrance are active again, along with older lesions that had previously calmed down or, as we hoped, had died completely. That hope was dashed this week. As much as we think we’ve outsmarted the crazy resilient cancer cells, they prove us wrong at times.

Being wrong is a horrible feeling and even more so in this context. It’s literally life and death. My life and my death. The weight of that, to be making decisions that will literally affect the length and the quality of my life, cannot be adequately described. It’s stressful and the pressure is beyond explanation.

While the cancer cells are getting themselves active again, the good thing is that there are no new lesions. There is nothing new in my bones and the cancer has stayed inside my bones. For a variety of reasons, this arrangement is what we need to keep in place as long as possible. Basically, as I understand it, we caught the impending progression early enough that we may have some hope of reining it in.

In light of the fact that Piqray is so new, the information/protocols describing what to do in this situation are limited. As my medical oncologist said, we’re in a gray area without much of a compass at this point. So, today, in our appointment, we went back to the basic science. After reviewing my research and hers, we got a science researcher on the phone; a science researcher who is working on a drug to improve the efficacy of Piqray. He’s in a unique position to be able to provide information to inform our discussions.

And so we came up with a plan for the short term. As I’ve often said, we terminal cancer patients literally live scan to scan, unable to make plans until we see the results of the next scan. These next three months are going to be quite interesting in many ways and not just in my household.

The current plan:

  1. I’ll stay on Piqray, Faslodex, Jardiance, Zometa and my regular list of supplements and vitamins.
  2. Tomorrow, I’m adding Metformin CR back to my regimen. I’d been on Metformin when I first started Piqray and then I switched over to Jardiance for a variety of reasons that are no longer relevant. The two drugs (Metformin and Jardiance) work very differently on the insulin and glucose in my body, and the hope is that they will work in a complimentary way. It is the insulin, after all, that fuels the cancer via insulin receptors. My insulin, while under control, is higher that we’d like it to be.
  3. After chemo education next week, I will also add Kisquali. Kisquali is another CDK4/6 inhibitor. I was previously on Ibrance and because I received 24 months of stability while taking Ibrance, we are going to see if adding Kisquali will help. We’re not willing to let go of Piqray yet and it’s not able to keep the cancer controlled on its own. So, we’re going to help it out a bit and see if that works before switching up treatments again.
  4. Since Kisquali can cause some heart issues, I’ll be getting regular EKGs to ensure that my heart is doing what it’s supposed to. Also, I’ll be getting more regular blood tests to monitor my liver function and magnesium levels. I’m sure I will get a really detailed education on this drug just as I have with all of the medication I’ve taken.

There are no contraindications with taking all of this medication together; at the same time, it’s not something that happens often. I told my doctor that if she wants to write a paper about our experiment, I want to be a co-author. The experiment has a short shelf life and we may have to make adjustments well before the regularly scheduled three (3) month scans.

Here we go …

Medical Update, 2nd of 2020, part II

After I wrote such a long post on Monday, I realized that there were some rather humorous things that happened while I was in the hospital. Yes, even amongst the pain and misery and general yuckiness that happens when they wake you up every few hours to make sure your vitals are still in normal ranges, there were some spots that were quite funny. It is important to remember these bright spots!!

First up, from the emergency room. When I arrived at the emergency room in horrible pain, the ER doc was worried that I might have a compression fracture in my spine, so they sent me for xrays. I was pleasantly floating in a sea of morphine, so I honestly didn’t much care about anything, but I did eventually notice that people who came in to the waiting area for xrays after me were being taken in before me. I mustered the energy to ask for a status after a bit and was told that I hadn’t been taken back for my scans because they were waiting on the results of my pregnancy test.

In “normal” visits, this usually makes me a bit mad because my records are pretty clear. The influence of the morphine made me giggle a little, I told her that they’d not performed a pregnant test, and that pregnancy was literally impossible because I’d had a complete hysterectomy in 2017. The look on the woman’s face was beyond priceless and they took me right back, apologizing profusely.

I may have repeated the tired joke about assumptions, while giggling …. not my usually mo, but I’m also not usually on narcotics.

The second example is maybe more of a hmmmmm than a funny. There was a sign in my hospital room that couldn’t be missed, it was right on the outside of the bathroom door.

Elliot and I spent an inordinate amount of time pondering and discussing why it says “very good care” and not “excellent care.” Seems they are setting the bar a little low or something. I did get excellent care from almost every person I came into contact with, but we just couldn’t let this one go and besides, sitting around in a hospital room is not all that exciting so we had to find something to talk about!

The third and final hilarious incident happened the third and last night I was in the hospital. Elliot stayed with me that night and he brought some of my home medication, which included my medical marijuana. I’d been given clearance to take my home medication in the hospital since the hospital pharmacy just doesn’t stock the things that I normally take, like Piqray or medical marijuana. So, we’d settled in for the night, I took my normal night medication and the CNA came in to take my vitals. While my blood pressure was normal, my heart rate was rather high. I knew why. When she asked if I was in pain, I said, as innocently as possible, “I’m always in pain.” As soon as she left and probably noted that I needed a psych consult, I immediately turned to Elliot and giggled about being high. He, of course, laughed his head off. I know, I had permission and I have a prescription, there’s still just a little too much of the rule following midwesterner in me still.

Proof that circumstances, albeit often grim, are not all doom and gloom. There are always bright spots, sacred moments, hilarious moments and moments that remind us that we are human.

I am reminded of a poem that I read in the play IV where Anya Silver talked about smiling and wishing the nurses a Merry Christmas amidst the horror of bad news and how we must retain our humanity. It’s important, these glimpses, of a life without cancer, these glimpses that remind us we are more than this disease.

Medical update, 2nd of 2020, medical mysteries

I had not planned to post yet another medical update, nor do I really like having information to share that constitutes a medical update; however, such is the existence of those of us living with Metastatic Breast Cancer (MBC).

So, here I am.

Last week, as Elliot and I were preparing to head to Orlando on Sunday to assist his father in settling into a new nursing home, I didn’t feel well. It was a migraine, complete with nausea, light and sound sensitivities and generally yuckiness. I tried to go, I really did, but that just didn’t happen.

Sunday afternoon was when I started vomiting. It may be TMI, but that was the beginning of nearly four (4) days of intractable vomiting. That’s literally the medical term for can’t stop vomiting, throwing up everything, misery to the nth degree. Fancy, right?

The reality of it is, it sucks.

Following my doctor’s advice, on Monday we went to urgent care where I got fluids and medication. That worked for about 6 hours. We went back to urgent care the next day, following my doctor’s instructions, where I received fluids and medication, plus they did a urinalysis and bloodwork. Looked like I had a UTI, so this time I left with antibiotics, which I immediately threw up after taking them.

By this time, it was pretty late on Tuesday night. There was a certain amount of desperation that had been building. I had had some body aches, but now it felt as if my entire body was on fire. I couldn’t keep down any pain medication so that didn’t help. I fished out my vape pen from when I’d first been diagnosed that I only use for break through pain and I vaped, A LOT. Once I’d nearly emptied the cartridge (hard to do, but I was DESPERATE to sleep), I was able to sleep for a few hours. As an aside, I’ve never been that high before and it was a glorious feeling for a few hours — my body didn’t hurt and I could finally relax.

My sweet husband was up with me nearly the whole night. It hurt so much to vomit that I would wail and cry each time I did. It was one of those marital moments that you can look back on and say, this, this is how I know he loves me.

When morning came, we decided to head to the ER. We’d had enough.

Once we arrived, we were brought back quickly and I got morphine really fast. Pretty sure they could see how bad I felt. Those 4 mg of morphine changed my life, literally. I could finally get comfortable for more than just a few hours. I got more anti nausea medication too. I could finally relax.

I’ll spare you the various potential diagnosis they tried on for size. Some of them were pretty scary. The cause of all this misery is still unknown for sure, but what we do know is that I showed up to the ER with metabolic acidosis.

Metabolic acidosis is a condition in which there is too much acid in the body fluids. It can also occur when the kidneys are not removing enough acid from the body. There are several types of metabolic acidosis.

Diabetic acidosis develops when acidic substances, known as ketone bodies, build up in the body. This most often occurs with uncontrolled type 1 diabetes. It is also called diabetic ketoacidosis and DKA.

Hyperchloremic acidosis results from excessive loss of sodium bicarbonate from the body. This can occur with severe diarrhea.

Lactic acidosis results from a buildup of lactic acid. It can be caused by:

• Alcohol

• Cancer

• Exercising intensely

• Liver failure

• Medicines, such as salicylates

• Prolonged lack of oxygen from shock, heart failure, or severe anemia

• Seizures

Other causes of metabolic acidosis include:

• Kidney disease (distal renal tubular acidosis and proximal renal tubular acidosis)

• Poisoning by aspirin, ethylene glycol (found in antifreeze), or methanol

• Severe dehydration

Citation: https://medlineplus.gov/ency/article/000335.htm

That pain I had, was literally the acidic blood in my veins affecting my muscles. Crazy, right? I arrived at the emergency room with a white blood cell (wbc) count of 15.3. I was thinking sepsis, I was thinking, maybe this is the end. I was thinking, is my body just failing? I was thinking, I must have brain Mets. I was thinking …. NO, I STILL HAVE TOO MUCH TO ACCOMPLISH!

Throughout the time I was in the hospital, there were questions about whether Piqray, the medication I take to manage the sneaky cancer boogers in my body, was to blame. While I am not diabetic in the traditional sense, Piqray causes hyperglycemia, which means I take Jardiance, a medication diabetics often take to manage their sugar. Jardiance assists with removing the excess glucose before it becomes insulin and that happens through the urine (TMI, again?). So, some of the diabetic complications do apply to me even though I’m not diabetic. Explaining that distinction is sometimes difficult and lots of medical people have argued with me, insisting that I do have diabetes. However, after my doctor consulted with Novartis, the manufacturer of Piqray, and consulted with others, including my new nephrologist, the conclusion is that Piqray is not to blame and I can stay on it. Woo-hoo.

The life of a metastatic breast cancer patient is not easy, but there are some bright spots to focus on if you try to find them.

For instance, my sister spent the first night at the hospital with me and when there was a nurse in training learning how to access ports who began to try to access mine, she got in her face and made her stop. She wasn’t about to let someone learning to stick me after all I’d been through. She’s my younger sister by 18 months and I’m pretty sure that was the first time she went all mama-bear on my behalf. Again, a moment where you can look back and say, this, this is how I know my sister loves me. She also made sure I had my phone charger and plugged my phone in whenever we could–soooooo key!! Amy is also an amazing photographer. She photographs natural beauty products and she brought a bag of stuff for me to hand out to the nurses. Head on over to Instagram and follow her @beautystealsinward for a myriad of ideas and knowledge about companies who are doing right by their employees, their customers and the environment!

I’m so thankful for my family who stepped up in many ways to ensure that my boys got to school, did their homework, ate food, slept, etc. It’s a huge weight off my and Elliot’s shoulders to know they are cared for, loved, and we don’t have to worry, we can focus on my care. My mom, dad and sister went above and beyond for us and we’re forever grateful to them. I’m not always good about asking for help and when you visibly see the love in the actions in others, that’s when you really know you are loved.

I’m also thankful for all the friends who have checked in on me and have offered solutions and comfort and support. Reminders that we are not alone is huge when you are not feeling well. Nataly, in particular, spent much of the day with me one day and gave me these awesome socks with our picture on them!!! The nurses were very complimentary and I’ve given out the place she got them to a lot of people.

I’m thankful for my port and how that saves me from being stuck so often. One of the more experienced nurses gave me some sort of special needle in my port that allowed me to get the contrast for my Brain MRI in my port. Since I’ve lamented for the past two years that I didn’t know to ask for a power port back in 2017 when I got mine, that has made me so happy!! I now know it’s possible, so I’ll be asking for it. Fewer sticks the better!!

Before I end, I want to talk about one of the few panic attacks I’ve had during this whole cancer experience. On Friday, when I was originally supposed to go home, I woke up after a pretty rough night to yet another migraine and vomiting. I also had tingling in my feet and hands. Then, my hands stopped working. I literally couldn’t move my fingers and nearly dropped the bag of vomit all over myself. I think I was crying or maybe wailing, things are a bit blurry. The nurse got me medication quickly and I could relax and my fingers worked again. Since I’ve not been able to keep much of the Effexor I take down because of the vomiting, I’ve wondered if that played a role in how much anxiety I had. I also understand that the seizing up of my hands and the tingling was from a severe potassium deficiency.

Whatever the cause of my panic, I’m reminded of how powerful our minds are and how much control what we think has over our bodies. I’m not saying positive thinking is the cure all, just that what we are thinking or feeling does have an effect. That effect can be positive or negative. In that moment, when I couldn’t stop vomiting, I was in excruciating pain from my head, and my hands didn’t work, all I could say was … “something is wrong.” I kept repeating that over and over, almost like a mantra. The nurse tried to get me to calm down, by saying calm down (hint hint, not the best technique) but I just couldn’t. My rational mind was off line and all I could feel was panic.

Once the morphine hit my system, I was able calm down and my hands worked again. Once the physical symptoms dissipated, the feelings I had about those symptoms became manageable. Many of you who know me know that I’ve spent a lot of time and effort avoiding taking narcotics. I do want to make very very clear that I know there is a place for narcotics, there’s a time when they are appropriate. This was one of those times.

For everyone who stuck with me to the end of my saga, thanks! It was a long week for everyone and I’m so happy to be home.

Medical Update, first of 2020

It’s 2020 and I’m still marveling that the 90s were so long ago! 2019 ended on a not so great note medically as I’ve been dealing with increasing right leg pain for the last few months. I did not repeat the mistakes I made when I was initially diagnosed and definitely reported my pain, frequently and urgently. While I am grateful to the doctors on my team who listened and responded, I’m extremely disappointed that my experience with a new doctor who was supposed to offer options had to result in me filing a formal complaint against her and her physician assistant who dismissed my pain and acted as if I was making it up.

I do have certain expectations of the people who are paid to assist me with my medical treatment. My visits with these people are not voluntary, I have to go. Their job is clear … to treat my cancer, the symptoms of that cancer along with the symptoms of the medication the doctors prescribe for me, and to look at me as a human being while performing task one and two. To me, the third part becomes extremely important when pain is involved and when any part of this three legged stool is compromised, the entire thing collapses.

So, here’s the chronology and the remaining tasks …

I’ve seen my physical medicine doctor, who was a bit stymied by my symptoms. He attributed the pain to the Mets in my right leg/hip. Some of you may remember that I had a 5 cm tumor in the middle of my right femur when I was diagnosed back in 2017. That femur was about to shatter when an orthopedist inserted a titanium rod inside that femur (along with the one on my left side). My right leg has had a lot of trauma, but this was a new pain and it has increased over the last few months.

After the physical exam, my physical medicine doctor sent me for xrays and an MRI. The X-rays showed that the hardware (one rod and 4 screws in each femur) are still properly placed. Some of you may remember that I developed heterotrophic ossification (HO) in early 2018, which is when microscopic shards of bone are left in the muscles and then it starts to grow. Super painful! The really bad thing is that the protocol is simply to increase muscle mass to deal with it, while dealing with and/or medicating the symptoms. The HO is mostly absorbed on the left side but there’s some still showing up on the right side, which could be part of the reason I’m in so much pain.

I had the MRI on Christmas Eve and had to repeatedly call and follow up to get the results from the orthopedic oncologist who was so terrible. When she finally got on the phone with me (after I told her supervisor I wouldn’t get off the phone unless she told me), she told me that I likely have progression and I should talk to my medical oncologist. Her dismissive and snippy attitude set me off and I had a rather loud conversation with her about how she should talk to patients. Pretty proud of myself that I managed not to curse her out but hopefully made the point that you don’t say stuff like that which raises anxiety exponentially, don’t offer any solutions, and then just get off the phone. I’m also still pretty incensed that she made no effort to talk to the rest of my medical team and basically just wrote me off.

So I met with my medical oncologist, who is amazing and never makes me go for longer than a day without knowing what’s going on, and we discussed the results of the MRI. There is a met in the head of my right femur that is pretty big. I’m not in danger of my bone shattering any longer because of the hardware, but I still have cancer there. Between the two MRIs in May of 2018 and December of 2019, the met grew from 5 cm to 8 cm. However, I’ve had 5 PET scans in that interval as well and the measurement that indicates activity (aka likely growth) has gone down, especially since I’ve started my current treatment. My last PET was in November of 2019, which was after the pain started.

If your head is spinning, just think how I felt!?

Realistically, I could be in the midst of a progression, which means my second line of treatment may have failed me after 6 months or maybe not. That kind of uncertainty is infuriating. Absolutely infuriating. Almost as infuriating as the pain that gets so bad I’ve had to resort to taking the oxycodone that my pain management doctor insists on prescribing to me even though I resist taking it. I hate how narcotics make me feel but just the fact that I’m taking it nearly every day should give some insight into how bad it is.

The plan, for now, is to stay on my current treatment, get a physical therapy consult to see if further exercises would be helpful, and then a PET in February, which would be the usual three month schedule. I’ve not had to change my routine much because I’m literally the most stubborn person about cancer not taking things away. I don’t enjoy being in pain or the side effucks of the medication I have to take to function, but I’m functioning.

Actually, I’m more than functioning …

My kids have had an amazing Christmas break, the connections I’ve made during 2019 means that I’m stepping into 2020 with options and ideas and really cool opportunities, my husband and my boys are healthy, I love connecting people with lawyers to do pro bono work, I love writing this blog and for ABC, which is a division of HealthUnion, a company full of amazing people, I love serving on the PTA Board at my kiddo’s school and volunteering in the library and I cherish the friendships I’ve made over the past two years, inside and outside of the Mets community.

Sometimes all you need to focus on the silver linings is to write them down.

So that’s my update … I’m starting off 2020 with pain but with a full heart and so much gratitude that I’m still here, still functioning, still parenting, still contributing and that’s the way it will be until it changes. I’m looking forward to seeing how my word of 2020, SACRED, is weaved into the fabric of the year and our experiences as a family.

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.