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…

I Found A Lump

A few days ago, on Tuesday, I found a lump on the left side of my neck at the base right where my neck curves into my shoulder; the same side of my body where my breast cancer was, and the same side where I had all of the terrible pain in my head. I was reading through my emails, playing with my necklace as I often do, and my fingers felt something odd. I took off my necklace to investigate further, and it felt exactly like the tumor I found in my breast a little over three years ago, as this one is a small round bump with a lump next to it.

It should be no surprise that I went into full panic mode. I thought about what to do next and called my husband. I told him about what I found and that I thought about calling my oncologist, but I knew he would want imaging done. I then remembered that my surgeon has a mobile ultrasound machine at his office, so it made sense to see him first and have him do an ultrasound. My husband agreed with my decision, so I called my surgeon’s office to see if I could get an appointment the following day, yesterday, which is an office day for him to see patients. Luckily, I was able to get an afternoon appointment to see him and have the ultrasound done.

During my appointment, he first took a look with the ultrasound at the lump I described to him, then he looked at the lymph nodes under my left arm. He couldn’t find anything unusual under my arm, and he said that he was not sure what the lump was on my neck, other than a mass. He asked me if I had contacted my oncologist yet, and I explained that I hadn’t called him because I knew he would want imaging, so I wanted to see him, my surgeon, first for the ultrasound. Then he asked if I wanted to do a PET scan or a biopsy first as we need to find out what we are dealing with this time. I asked his opinion and told him that I trust his judgment, which I do without question, and we agreed that a biopsy should be done first, and then if it comes back positive, we will do a PET scan to see if I have any other tumors in my body. So early in the morning on Friday, I will go back to his office, and he will do a needle biopsy. He gave me the option of being asleep during the biopsy or using the needle with a local, and I chose the needle because I didn’t see the need to be put to sleep for a biopsy after having five surgeries in twenty-two months.

Quite honestly, I am scared. I would go into more about my fear, but it touches on what I am not ready to share yet. The only comfort I have right now is that I already know the possible next steps, no surprises this time, which of course is both good and bad.

I will update as soon as I have my biopsy results which should be some time between late Friday and Monday.

My 5th Surgery: Follow-up Appointment with My Surgeon **WARNING: GRAPHIC SURGERY PHOTOS**

Yesterday, I had my first follow-up appointment with my surgeon. Once the tech was done with my blood pressure check and updating my information, she removed my bandage. She apologized at one point because she was pulling on the bandage a little harder because the gauze was sticking to it. I assured her that she wasn’t hurting me because I was still numb under my arm from my first surgery almost two years ago. I asked her how the incision looked, and she said that everything looked good. She then told me that my surgeon would be in soon to see me and left the room.

A few minutes later, my surgeon walked in. I turned to look at him and noticed that he had a winter coat on. I had been sitting there with half of my paper top on burning up because the heat was on. I laughed and said, “You do know that it is 73 degrees outside, right?”; He smiled and said that for some reason, he is always cold when he is in the office.

I have a ton of steri-strips, about 30, and my incision is about 9 inches long. This is my most extended scar so far, but because of how my surgeon combines internal stitches with steri-strips for healing, my scar will be minimal, and it will become less noticeable with time. The scar on my chest’s right side from the first reconstruction surgery is barely noticeable 17 months later, so I am sure this scar will be the same.

I know it looks gnarly, but I am not in much pain at all.

Once we were done talking about this recent surgery, he said that this should be my last surgery. He is confident that I will be fine from here on out and that I will not require any further surgeries. The only way I would need surgery in the future would be if I develop Capsular Contracture. We are both aware from previous conversations that I could develop that particular complication because I went through many radiation treatments and I have implants. I will need to stay mindful of any changes that I am noticing and let him know. The only way to fix Capsular Contracture is to go back into surgery and have my breast implants replaced, so hopefully, I will never have to deal with that.

I asked him if I can start walking on my treadmill. I told him that I had finally fought off the fatigue plaguing me for over a year and that I was getting back to working out again before this last surgery. He said, “so you are itching to get back on,” to which I replied, “yes, I have been since the day of my surgery!” He said that I could walk on my treadmill, but I can’t swing my arms; I need to keep them at my sides, and I can’t do anything too strenuous. I need to keep resting and healing over the next two weeks, and then I should be released from any restrictions once the steri-strips are removed during my next appointment. I told him that my goal is to lose another 20 lbs or so, and he said that it would be ideal for me to do that as it is essential to keep my body mass low considering the type of cancer I had. Estrogen-fed breast cancer thrives when a patient’s BMI is too high, and mine is too high because I am about 20 lbs overweight. So the best thing I can do for myself to keep from having a recurrence of my cancer is to continue exercising, watch my portions, and what I am eating to get to an ideal weight and BMI.

To end my appointment, I thanked him for doing this last surgery. I let him know that I could feel the difference later on, on the day of my surgery, that the area was gone, my chest looks much better, and that I felt much better. I said, “First, you saved my life, and now you are helping me improve my life. I will never be able to thank you enough.” He looked down and away from me when I said that to him, with an almost bashful look. His reaction at first surprised me, but then it didn’t because his genuine reaction reminded me of why I am so grateful that he is my doctor and how lucky I am that he has been by my side from the beginning. He does not have a big ego like some surgeons; he is passionate about his work, humble and caring, and it shows.

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