Oncologist Appointment on Monday June 20th

I was pretty wiped out when I got home from my appointment on Monday, so that’s why I am just now updating you. Each appointment is usually about 2 hours long, from checking in to leaving, and depending on how I am feeling on that particular day, it can take a lot out of me. Below is an explanation of what happened during those two hours. 

When I check in, I fill out a short form with my name, arrival time, if I have been recently hospitalized and if I have changed my insurance. I give the staff my name, birth date, and the short form. The staff person goes into a drawer and pulls a file with two more forms for me to fill out, hands me a clipboard, and they put a hospital bracelet on me. I sit in the waiting room, which is almost always pretty full, so about 16 to 18 people, both patients, and caregivers. The first form is a general form asking about any recent side effects, hospital stays, surgeries, medications, allergies, and what questions I have for my doctor. The second form is a suicide form with a few questions about self-harm and caregiver abuse. It is sad that such a form exists, but it is a reality for cancer patients, especially older patients. I fill out both forms, keep the forms with me and return the clipboard to the check-in area. This process is done every time I have an appointment.

Next, I am called back to the lab area, where I hand the tech my completed and signed forms. They weigh me, take my temperature, blood pressure, and oxygen. The tech then asks me about my pain level and if I am constipated, both common issues while undergoing cancer treatment. Last, the tech draws two vials of blood, puts them in the machine for processing, and walks me to the exam room. To give you an idea of how big this office is, there are eight doctors and twelve exam rooms.

Everything is very efficient, so I rarely have to wait longer than five minutes before my Oncologist’s PA comes in and hands me the results of my blood panels. I see his PA almost every time I have an appointment, and every other time I am there, I see both my Oncologist and his PA. On Monday, the PA said that everything looks good considering the treatment plan I am on. My white and red blood cell counts are a little low, but nothing to be overly concerned about. My ANC is low again but not too low, so hopefully, it will stabilize as I continue my treatment.

The last part of my appointment is when I go back to the chemo treatment room to get my injections. This is generally the longest part of my appointment because the medicine for my injections isn’t ordered from the pharmacy (which is in-house) until my Oncologist or PA has seen me and approved for me to get my injections, which is determined by my blood panel results. Once my nurse gets the injections from the pharmacy, she warms them because the medication is so thick, so this adds on extra time for me to wait, but it is an important step. Once the injections are sufficiently warmed, I am taken into “The Shot Room,” and I am given my injections which take several minutes due to the amount of medication. I mentioned on Monday that I have a lot less pain and discomfort after my injections if they massage the area after taking the needle out. By massaging the site of the injection, they help the medication disperse quicker. My nurse thanked me for letting her know that info and said she would pass the word on to the other nurses. Patients are often scared to speak up about even a minor issue, and it doesn’t need to be that way. I have learned to be very open no matter how embarrassed I might be because I know that after coming to see my oncologist and his staff for over three years, they want me to be open, honest, and, most importantly, not to suffer in silence if something is causing me issues. So please remember, you are your best advocate when it comes to our healthcare system!

So what is next? I started back on iBrance on Monday after having a much easier time on the lower dose. On July 11th, I will have my PET scan to check the size of my tumors. Hopefully, they will be smaller, which means that the medications are working. On July 18th, I will go back to my oncologist’s office for my monthly appointment and get the results of my PET scan. My husband will go with me on the 18th but not on the 11th. Unfortunately, I am used to PET scans now, so he does not need to go with me.

Take care, everyone!

Myths and Misconceptions About Metastatic Breast Cancer

I have had quite a few people reach out to me and ask me questions about my diagnosis of Stage 4 Metastatic Breast Cancer and its meaning. I have also noticed that many people are keeping their distance from me, and just like the first time I had breast cancer, I am sure it is because most people do not know what to say to me, so I feel the need to explain things as best as I can. I do not want to sugar coat the reality of my diagnosis so this is why I chose this article to share with you. The article does an excellent job of explaining the myths and misconceptions….I hope it helps.

First and foremost, I do not have terminal cancer. But to be clear, there is no cure for Stage 4 Metastatic Breast Cancer; it is advanced and requires more aggressive treatment. Terminal or end-stage cancer refers to cancer that is no longer treatable and eventually results in death. I am currently in treatment with my oncologist taking state-of-the-art medications proven to prolong life and keep cancer from spreading more than it already has. Every three months, I will have a PET scan to check the size of my tumors, and once they have either shrunk or stabilized, I will be in remission. Being in remission does not mean I am cured because there is no cure; I will have Stage 4 Cancer for the rest of my life, so my treatments are indefinite. If my prognosis should change to terminal, I will let you know, but I am not expecting that to happen anytime soon.

Some people tend to think that breast cancer is breast cancer, regardless of stage at diagnosis. In the media, breast cancer is often portrayed as a relatively good type of cancer that can be overcome with the right combination of treatments. But as our Community at Breastcancer.org in our stage IV discussion forum tell us again and again, stage IV, or metastatic, breast cancer — cancer that has spread beyond the breast into other parts of the body, such as the bones, liver, or brain — is very different from early-stage breast cancer. They often need to educate family, friends, neighbors, and coworkers about this reality. What follows are nine of the most common myths and misconceptions about metastatic breast cancer.

Myth #1: Metastatic breast cancer is curable Whether metastatic breast cancer (MBC) is someone’s first diagnosis or a recurrence after treatment for earlier-stage breast cancer, it can’t be cured. However, treatments can keep it under control, often for months at a time. People with MBC report fielding questions from family and friends such as, “When will you finish your treatments?” or “Won’t you be glad when you’re done with all of this?” The reality is they will be in treatment for the rest of their lives. A typical pattern is to take a treatment regimen as long as it keeps the cancer under control and the side effects are tolerable. If it stops working, a patient can switch to another option. There may be periods of time when the cancer is well-controlled and a person can take a break. But people with MBC need to be in treatment for the rest of their lives.

Myth #2: People with metastatic breast cancer have a short amount of time left While some people mistakenly think MBC is curable, at the other extreme are those who assume it’s an immediate death sentence. But there is a big difference between stage IV incurable cancer, which MBC is, and terminal cancer, which can no longer be treated. A person isn’t automatically terminal when she or he gets a metastatic diagnosis. Although MBC almost certainly will shorten someone’s life, it often can be managed for years at a time.

Myth #3: People with metastatic breast cancer look sick and lose their hair “You don’t look sick.” “You look so well.” “Why do you still have your hair?” “Are you sure you have cancer?” These are comments that people with MBC report hearing. But there are many treatment options besides chemotherapy, and people often appear well while taking them. Some people with MBC report that they actually look better than they feel while in treatment. So they sometimes have to let family and friends know that even though they appear fine, they don’t feel well.

Myth #4: Metastatic breast cancer requires more aggressive treatment than earlier-stage breast cancer Related to myth #3 is the notion that because MBC is advanced cancer, doctors have to pull out all the stops to fight it. But that’s actually not the case, says Breastcancer.org professional advisory board member Sameer Gupta, MD, a medical oncologist at Bryn Mawr Hospital in Bryn Mawr, Pa., and a clinical assistant professor of medicine at Jefferson Medical College in Philadelphia. “The goal Is control rather than cure. Think of it as a marathon vs. a 50-yard dash.” Doctors treat earlier-stage breast cancer more aggressively because the goal is to cure it: destroy all of the cancer cells and leave none behind, reducing the risk of recurrence as much as possible. With MBC, the goal is control so that patients can live well for as long as possible. And chemotherapy isn’t necessarily the mainstay of treatment.

Myth #5: If you’re diagnosed with metastatic breast cancer, you did something wrong or didn’t get the right treatment the first time When some people hear stage IV breast cancer, they assume something must have been missed along the way to let the cancer get that far. There is a misconception that breast cancer always develops in orderly steps from stages I to II, III, and then IV — and that there’s plenty of time to catch it early. People with MBC can face misguided assumptions that they must have skipped mammograms or self-exams, or they didn’t control risk factors such as not exercising enough, watching their weight, or eating healthy. But a person can do everything right and still get MBC. Although regular screenings increase the odds of diagnosing breast cancer at an earlier stage, they can’t guarantee it. Another major misconception: If you’re diagnosed with metastatic cancer after being treated for an early-stage breast cancer, you must have chosen the wrong treatment regimen or it wasn’t aggressive enough. But between 20% and 30% of people with an earlier-stage breast cancer will eventually go on to develop MBC — and there’s often no good explanation as to why. And it can happen to anyone. Treatments can reduce the risk of recurrence, but they can’t eliminate it.

Myth #6: Metastatic breast cancer is a single type of cancer that will be treated the same way for every person The label metastatic contributes to the myth that it is one kind of breast cancer. But like earlier-stage breast cancers, stage IV cancers can have different characteristics that will guide treatment choices. They can test positive or negative for hormone receptors and/or an abnormal HER2 gene — the gene that causes the cells to make too many copies of HER2 proteins that can fuel cancer growth. These test results guide treatment choices. Furthermore, treatment choices can depend on a person’s age, overall health, and whether there are other medical conditions present.

Myth #7: When breast cancer travels to the bone, brain, or lungs, it then becomes bone cancer, brain cancer, or lung cancer Not true. Breast cancer is still breast cancer, wherever it travels in the body. However, the characteristics of the cells can change over time. For example, a breast cancer that tested negative for hormone receptors or an abnormal HER2 gene might test positive when it moves to another part of the body, or vice versa (positive can become negative). “Keep in mind that the cancer cells are trying to survive in the body, so they can change,” says Dr. Gupta. “We always emphasize rechecking the biology.”

Myth #8: If an earlier-stage breast cancer is going to recur as metastatic breast cancer, it will happen within five years of the original diagnosis Ninety percent of MBC diagnoses occur in people who have already been treated for an earlier-stage breast cancer. Many people are under the impression that remaining cancer-free for five years means that a metastatic recurrence can’t happen. However, distant recurrences can occur several years or even decades after initial diagnosis. Factors such as original tumor size and the number of lymph nodes involved can help predict the risk of recurrence. For example, a 2017 survey of 88 studies involving nearly 63,000 women diagnosed with early-stage, hormone-receptor-positive breast cancer found that the risk of distant recurrence within 20 years ranged from 13% to 41%, depending on tumor size and lymph node involvement.

Myth #9: The mental and emotional experience of people with MBC is the same as that of earlier-stage patients People with MBC report hearing comments such as, “At least you have a good type of cancer,” “Aren’t you glad so much research on breast cancer has been done?,” “Fortunately you have so many options.” These might comfort people with early-stage breast cancer, who can look forward to one day finishing treatment and moving on — but people with MBC don’t have that luxury. They know they will be in treatment for the rest of their lives. They also know that their life is likely to be shorter than they’d planned. Mentally and emotionally, people with MBC have a completely different experience. “For them, the whole ringing the bell idea [to celebrate the end of treatment] does not work,” says Dr. Gupta. “I have patients who are coming in once a week and have to plan their lives around their treatment. The whole pink brigade idea is very upsetting to them.” Fortunately, more and more people with MBC are speaking up and calling attention to how their experience differs from that of people with earlier-stage breast cancer. People with MBC live with cancer always in the background of their lives, but with new and emerging therapies, many are living longer and maintaining their quality of life.

Oncologist Appointment & Third Round of Faslodex Injections

I had an appointment with my oncologist on Monday to run my blood panels, talk about my side effects and get my third round of Faslodex injections. I spoke with the PA first about the medications I had picked up at the pharmacy over the last week for nausea and heartburn. I assured her that both were working great, so I was finally getting some relief.

My oncologist came into the exam room and handed me my blood panel results, and it was not what I expected. I knew that certain levels would be off but for them to be where they are after only three weeks on iBrance was a shock. My white and red blood cell counts are low, not dangerously low, but lower than we would like, and my ANC is low. ANC, Absolute Neutrophil Count, is the “infection-fighting” count. My count is .8, and the low end of normal is 1.25, so I am at high risk for infection. I need to stay away from crowds, busy restaurants, and people who have a cold or the flu because I could end up in the hospital with an infection and become severely ill.

After taking in the initial shock of this news, my doctor said he was very concerned, so he told me to stop taking iBrance for the next month. The break in taking the medication should give my system a chance to get back to normal levels. I had already received this next round of drugs from Pfizer because I was scheduled to start back on it after a week off a few days ago on Monday. We did discuss dropping my dose from 125mg to 100mg, but we will only do that if my bloodwork doesn’t improve. So, for now, he told me to hold on to the meds, so I will have them to take again starting on May 23rd.

Once I was done discussing everything with my doctor, I went back to the infusion room to get my Faslodex injections. Have I said how much I hate injections? I absolutely hate injections, but that is the only way this particular drug is administered, so I don’t have a choice. It seems that each time I have the injections, I have different side effects from them. Generally, I deal with headaches, bone pain in my hips, and, as with this last time, pain from the medicine itself. I have a small area on the left side near the injection site that is causing me some pain, but it has improved each day. Some good news is that I am done with the initial three doses, so now I will have the injections monthly instead of every two weeks.

During my next appointment on May 23rd, I will see my oncologist, have my blood panels run, and get my Faslodex injections. This will be my regular schedule moving forward every month for an indefinite period of time.

**WARNING** Graphic details about side effects: My First Twelve Days on iBrance

A quick disclaimer, please remember that the subject matter in this blog post is specific to my experience while taking iBrance for Stage 4 Metastatic Breast Cancer. If you are about to start or take the same medication, your experience may differ from mine, so please keep that in mind.

Information about possible side effects: Nauseavomiting, loss of appetite, diarrhea, tiredness, weaknesshair lossmouth sores, or numbness/tingling of arms/legs may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly.

People using this medication may have serious side effects. However, you have been prescribed this drug because your doctor has judged that the benefit to you is greater than the risk of side effects. Careful monitoring by your doctor may decrease your risk.

Tell your doctor right away if you have any serious side effects, including: signs of anemia (such as unusual tiredness, pale skin, fast heartbeat), easy bruising/bleeding (such as nosebleed), signs of lung problems (such as chest pain, shortness of breath).

This medication may lower your ability to fight infections. This may make you more likely to get a serious infection or make any infection you have worse. Tell your doctor right away if you have any signs of infection (such as fever, chills, persistent sore throatcough).

A very serious allergic reaction to this drug is rare. However, get medical help right away if you notice any symptoms of a serious allergic reaction, including: rashitching/swelling (especially of the face/tongue/throat), severe dizzinesstrouble breathing. This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.

My first seven days, March 28th – April 3rd, on iBrance were fine; no significant changes in how I felt. Unfortunately, I am not a stranger to chemo treatments, so I knew that it was a matter of time before I began to deal with possible side effects as the medication builds up in my body.

On day 8, I started having waves of nausea all day with diarrhea after every meal, and that evening, I started having abdominal pain and cold sweats while in the bathroom. I made sure to keep my water intake up as suggested by my pharmacist, which is 2 to 3 quarts a day, but it didn’t help much.

Day 9 was about the same but with less abdominal pain. I began to get scared to eat because I would feel better initially, only to feel worse about 20 minutes after eating.  I started to have other side effects combined with those I already had, like tingling in my hand and losing my appetite.

On day 10, I woke up with diarrhea, but it only happened once, and then I had the opposite problem the rest of the day, constipation. I am still nauseous on and off all day, and my appetite is non-existent, but I hope that I will improve in the coming days as my system continues to adjust to the medication. I am eating, but sometimes I need to force myself because I know I need to eat to stay healthy. I am losing weight but not so much that I am concerned since I am still about 20 lbs overweight.

On days 11 and 12, I have felt much better. The tingling in my hand has stopped, but I am still dealing with nausea on and off; it is nowhere near as severe as the past three days, so that is an improvement. My appetite is slightly better, so eating hasn’t been as much of a struggle. Hopefully, I am turning a corner, and next week, my third week on the drug will be much easier. I am worried about having a week off, starting on the 18th and then starting back up again, but I am trying to remain optimistic that it will be OK.

My upcoming appointment at my oncologist’s office is Monday, when I go in for round two of my Faslodex injections. I am not scheduled to see him so I will discuss the side effects with my nurse, and if she feels it’s necessary, I can ask to talk to my oncologist. Overall, I am doing OK, considering that I am dealing with more side effects with this medication than I ever did while going through infusion chemotherapy.

Radiation Oncologist Appointment

A few days ago, I had an appointment with my radiation oncologist. I hadn’t seen her in over two years, so it was nice to see her, but I wish it had been under different circumstances. After we caught up on where we had been, I was finally able to show her the pictures from our vow renewal ceremony, so that was nice, and what we had been doing; we discussed my cancer.

Unfortunately, since the CT of my neck came back clear, she has to wait for the results from my PET scan. She needs to see the exact size and location of the tumor to figure out if she can treat me or not. If there is even the slightest part of the tumor in my previous treatment area, she can’t put me through radiation. I didn’t know that you couldn’t radiate the same area more than once, so we must have clear images to compare from 2019/2020 to today. My PET scan is tomorrow, Friday, and I am going back to my oncologist next Tuesday for the results.

So after my initial appointment, my doctor asked if I could come back in an hour to do some plotting with the tech. I didn’t need to be anywhere, so I said I could come back, no problem. When I came back, they took me to the CT room, measured a few coordinates, and went ahead and marked me with stickers in case I could have radiation soon. When I laid down on the table, my doctor came over and felt where the tumor was, and she said, ” it seems like it is very superficial; that might be why the CT scan didn’t see it.” I hadn’t thought of that being the reason for the clear CT, but it makes sense.

Next, they had me put both arms over my head, which is the position I will have to be in for the radiation treatments. It has been almost three years since my first surgery in April 2019, and it still hurts to have my arms up over my head for any length of time. I have gained a lot of mobility back since that first surgery but not 100%. Because of the pain I am in when in that position, they will make molds for me to rest my arms in so the pain and pressure will be decreased, making me more comfortable. When I put my arms up, my doctor felt the tumor again and said it had dropped slightly in location, taking it closer to the area where I had radiation before; this is not good if I want radiation to be the primary treatment to get rid of the tumor.

So, now we are waiting for my PET scan and the results. What will happen if I can’t have radiation? I am guessing that I will have to have surgery to remove the tumor, but after that, I am not sure. I will be asking my oncologist about that when I see him on Tuesday next week.

I Have Cancer, Again

I received my biopsy results yesterday, and they were positive for cancer. My oncologist’s office called me in the morning and scheduled an appointment right away for today to discuss our next steps.

I was hoping that my oncologist could tell me what type of cancer I have today, but we do not have those results back yet, so I will hopefully know in a few more days. There are a couple of possibilities as far as my treatment goes, but I won’t have a definite plan until scans are done, and the results are back.

On Monday, I will be going to the hospital for a bone scan-nuclear medicine, CT neck with contrast, and CT C/A/P with contrast {ct scan of chest, abdomen, and pelvis.} If there is cancer anywhere besides my neck, we will know for sure once the scans are completed and analyzed.

On Friday next week, I will meet with my oncologist to review the scan results and my treatment plan. I do know that I will most likely have radiation therapy on my neck; anything beyond that will be determined during my appointment.

More to come…

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