Archive | July 2013

Chemo side effects

Chemo was five days ago, and I’m starting to come out from the fog of fatigue. We had an hour and a half chemo education class before I even went through chemo, but it’s hard to believe any of those side effects will actually happen to me – until they do, at which point I just want to feel not sick.

I’ve been making the comparison of chemo to pregnancy – there’s all these potential changes that you’ll experience, but you’ll probably only experience a subset of all the possibles. Everyone warns you about all of them, though. At this point, the hardest to deal with has been the fatigue. The day after chemo was great – no problems whatsoever, and my energy level was normal. I tried really hard not to push it too hard, since I knew I was working on borrowed time. Fatigue was the one side effect the doctor kept mentioning, so I knew it was coming.

Chemo minus two days was when the fatigue set in, and it’s just now lifting, four days later. My body wasn’t tired so much as my mind and my head was tired. My eyes would feel like they were crossing, I was so tired. If I could get up the motivation to do something, I’d feel fine during the activity, but I’d want to go to sleep as soon as I was done. Reading or even watching TV seemed too taxing to me as well. Laying on the bed, listening to a podcast or radio show was about my speed, and by 9pm, I was ready for bed.

Today, I have felt a bit more energetic, which is great, but I’ve also had a bit more nausea. It was 2:30 before I felt like I wanted a nap, and I actually got a few things done this morning (like laundry). By late afternoon, though, my stomach was telling me to sit quietly on the couch. At least I had enough energy to do some reading for a change, and the Compazine finally seems to have taken the edge off the nausea. I don’t think the dog is getting a walk this evening, though. He’s all snuggled up on his bed anyways, so I’m not feeling too guilty for taking a night off.


First chemo

Nicole was my chemo nurse today, which meant she was the primary person who put each medication on my stand and started the IV through the port. You can see me all set and ready to get started in the photo.

All set to start adding drugs to my port

All set to start adding drugs to my port

I didn’t bother with the pain-numbing cream over my port. It just seemed like too much work for a little needle stick that hurts for only five seconds.

I get nine drugs each time I come for chemo. They start out with two anti-nausea drugs, Emend and Aloxi. Next I got an IV injection of a steroid, dexamethasone. I have to take the steroid the day before and for three days after to prevent edema from one of the chemo drugs. Yesterday, after taking my second dose of the dexamethasone, I noticed my first side effect – the lower side of my forearms was tingly and I felt pressure in the muscle. It was the weirdest feeling that went away about six hours after taking the dose. I know, because I was still awake at midnight, and 2am, and several other times in the night. I’m hoping that was mostly nerves, because I’d like to be able to sleep for the next few days.

After the steroid, I got Pepsid, to prevent heartburn and an allergic reaction. Then came Benadryl, which made me feel a little drunk and made my legs twitch (odd, but a common side effect). Finally, I got to my chemo drugs. We started out with a slow drip of Taxotere. Allergic reactions are common enough with this drug, they monitor you closely, and start it slow, increasing the drip rate over time. Next was Carboplatin, a pt78platinum-based chemo drug. I got two Tylenol, and then the last drug, Herceptin. Herceptin is a biological, treating specifically HER2-positive cancers. It’s not technically chemo, so it has less side effects, but I will get that one for a full year.

All the nurses are quite chipper and helpful. Although I pretty much had the place to myself when I started at 9am, by 1pm, all the chemo chairs have filled up. However, any of the nurses in the chemo area were able to help out. Ever once in a while, someone would be by with snacks and drinks if I wanted anything. The chemo room is pretty cold, and you’re sitting all the time. I ended up in a sweater, long pants, and still needed a blanket over my legs. I’ll have to force myself to wear pants to all chemo days, or I will be quite cold.

Overall, wasn’t a bad start to the process. We got in at 8am to see the doctor, and were out by 3:30pm. The only drug I noticed going in was Benadryl, and that wasn’t at all surprising. Now to see what the side effects are going to be like.

Element added: platinum

Tests to clear up the previous tests

One more round of tests before the chemo starts. I needed an abdominal CT scan with contrast and a vaginal ultrasound to check on the abnormalities the PET scan found. I would also need a baseline MUGA test.

ba56The CT scan required a 6-hour fast, so I got up at 5:45 for a quick breakfast, and went back to bed. There was no way I’d make it to noon without some food in my stomach, and I really didn’t want to start my day that early. Turns out the fasting was to allow the barium contrast in my gastrointestinal tract to show up most strongly. I had to drink 900 mL of barium sulfate in about a half an hour. I got berry flavor, which wasn’t actually too bad. The worst was the slightly thick texture of the drink which made me gag occasionally, but I managed to get it all down. Once I finished the barium, it was time to get into the CT scanner – just another table that slides through a tube. I also needed IV iodine to add contrast to the blood vessels. Since I have a PowerPort, they actually got to use my port for the first time – yeah! Nurse said I had good blood return, so the port was working well. 153The iodine injection caused the weirdest sensations. It made the inside of my ears feel hot, and made me feel like I was peeing, although I wasn’t. It only lasted a minute or two, but it was quite odd. The CT scan was quiet, but I did have to hold my breath a couple of times. The nice thing was there was a counter on the machine that told me how many seconds longer I would have to hold my breath, so I wasn’t wondering how much longer every time.

Elements added: Barium and Iodine

The ultrasound to look at my ovaries was the easiest test yet, since there were no injections needed. I just had to drink a lot of water before getting there so I had a full bladder for the first half of the test. I did get to empty the bladder before the tech did the intravaginal part of the test. Once again, I got talking to the tech, and she showed me the ovaries and where the developing eggs were on the ovaries.

The final test of the week was a MUGA scan (or Multi-Gated Acquisition scan). Because my tumor is HER2 positive, Dr. Li is adding Herceptin to my drug regimen. One of the less common (2-4% chance) side effects in heart failure, which would definitely count as a bad thing. So, as a precaution, everyone on Herceptin has periodic tests of their heart to make sure it’s fine. There’s a lot of natural variation in heart efficiency, though, so you need a baseline test to compare with future tests.

A MUGA scan uses radionucleotides, specifically tc43technetium, attached to your red blood cells to get a picture of how efficiently your ventricles contract. Technetium will attach to different cells in your body, depending on what loading medication they give you. I got the loading medication (a sn50tin-based solution), and then sat in a waiting room while it moved throughout my bloodstream. After about 20 minutes, I got the technetium injection, and then moved to the machine to measure my heart function. There, I laid under a set of white plates for eight minutes and was done. Since I had been talking quite a bit with the tech (are you sensing a theme here?), he called me over and showed me the pictures the machine took. It was pretty awesome seeing the blood move through the heart, and the walls of the heart moving. The scan is set up to compare the ratio of the left ventricle at minimum and maximum contraction. Once again, I was radioactive for the day, and a bit longer than the PET scan since the technetium has a half-life of six hours.

Elements added: Technetium and Tin

CT results showed the mass on my kidney was a cyst (yeah – not renal cancer!) and there’s a cyst on the ovaries. Ultrasound was inconclusive – there’s a mass on an ovary, but it wasn’t clear with it is exactly (probably the cyst seen on the CT). MUGA showed good heart functions to start with. All set to start chemo now!

Meeting the oncologists

I finally got to meet the radiation oncologist, Dr. Figura, and the medical oncologist who is in charge of chemo, Dr. Li. My entire medical team had met that morning to talk about the results from all my tests and come up with a treatment plan. I will be getting chemo first in order to shrink the tumor to a size that is more easily operable, surgery, and then radiation treatment.

We met with Dr. Figura first, even though I’ll be under his care last. He talked a bit about how radiation therapy works. in my case, I’ll be getting 28-33 doses, five times a week until it’s done. The best thing was being able to see my PET scan. I love the digital imaging that doctor’s have access to these days. The PET imaged slices of my body, and you could see all the different parts – my favorite was the parts of the skull and the cross-section of my shoulder.

Dr. Li went over the results of my previous tests. The breast MRI showed no abnormalities in the left breast, and no chest wall or skin involvement on the right. Unequivocal good news! The PET scan, since it was a whole body scan, found a few abnormalities. Good news first – no involvement in the lungs, liver, or bones (the common places breast cancer spreads). They did find a dark spot on one of my kidneys. Since it’s dark, we know it’s not the breast cancer. It’s probably just a cyst, but it could theoretically be renal cancer, so I need a CT scan with contrast to check. Also, the ovaries showed some abnormalities, but it was unclear what’s going on (not enough intra-abdominal fat to resolve the image). So, I need an ultrasound to check that out. Also, I need a baseline MUGA test to check my heart functions. Off to schedule more tests!

First week of tests

So, before I start treatment, the doctors wanted to know how far the cancer has spread. We know it’s in the axillary lymph nodes, based on the biopsy, which means it could move about in the lymphatic system. Also, since it is lobular carcinoma, there’s a higher probability of it showing up in the opposite breast. Therefore, I was off to a PET scan and a breast MRI. With all the tests and injections for contrast, I’m also starting my own personal element collection of injections.

gd64Breast MRI. They have you lay face first on a cut-out structure so your breasts can hang down, and a plastic line goes down your breastbone. Your arms go over your head, and luckily there was no pressure on my port site or I couldn’t have done it. You get sent into the machine on your stomach, with a blanket over your eyes, so there’s no worries about claustrophobia. I even got headphones with my choice of music, not that I could hear it half the time because of the noise of the machine. They used an IV to inject the contract agent about half way through the test. I could feel the coldness as it flowed over the skin on my arm, but otherwise nothing. I did not enjoy the MRI because of the noise. So many different loud noises, randomly starting and stopping. Then, when you get out, you can hardly breathe because of the pressure on your breastbone that was supporting your weight during the test.

Element added: Gadolinium

f9PET scan. I had to fast for six hours before this test, although since it was first thing in the morning, it just meant skipping breakfast. They inject you with fluorine-doped glucose (I picked the other arm for the injection), that would move to any part of the body that was using lots of energy. To minimize false positives, and to make sure only cancer cells glow on the test, they inject you with the glucose, and have you sit quietly. You can listen to music, podcasts, or watch TV. No talking, no reading, just sitting quietly. After an hour, they send you through another tube. This one is at least quiet. They move you through the tube at a constant rate for an initial CT. After the CT is done, you sit at specific points in the tube, starting at the head and moving down the body, pausing for 5-10 minutes for each section. The isotope of fluorine they used had a half-life of only 110 minutes, but I was radioactive for the rest of the day. They even gave me a card if I went to the airport or court-house to show I wasn’t trying to bomb the place – just had a PET scan that day.

Element added: Fluorine

Port surgery

Based on the size of my tumor, I would be getting chemotherapy before surgery on my breast. However, that didn’t mean I wasn’t getting surgery. It would just be an addition instead of a subtraction. Dr. Engel strongly recommended that I get a port, which would make chemo a much better process. So, outpatient surgery was scheduled for the morning of July 3rd.

The surgery was actually quite quick. Apparently, it can be variable in length, depending on how easy it is to find the subclavian vein and whether or not they hit the lung on the way in. My husband went out for breakfast after they wheeled me in for surgery, and the doctor was looking for him by the time he got back from breakfast.

I felt pretty good after the surgery. I didn’t really want to use my left arm, but it only felt like I’d taken a hard hit in hockey. However, the pain meds they’d used in surgery wore off about 2pm, and now the arm felt like someone was twisting a knife just under my collarbone. Time for the pain meds. They made me sleepy, though, so I only used them the first two days. After that, the pain was at an annoying level, instead of being unbearable.

While the fierce pain from the surgery was gone in a few days, it still hurt for days (and really, weeks) afterward. The pain just changed, from an unwillingness to move my left arm to a pain across my chest, to pain in the skin all around the left side of my chest. It was the skin pain that has been most difficult to deal with. Sometimes, I could feel the port stretching the skin on my chest. Other times, anything touching the skin has been unbearable. Luckily, it’s been quite warm lately, so I’ve been able to get away with sleeveless shirts to minimize the skin irritation.

The location of the port is such that my bra straps don’t touch it (good thing, or I wouldn’t be able to wear a bra), but the seatbelt does when I drive. It gets quite painful at times to have the seatbelt stretch right across the surface of the port. Lately, it’s the skin near my underarm that’s been most sensitive. At two and a half weeks out from the surgery, it’s getting to the point were I don’t notice it all the time, just some of the time. It is impressive, though, since I can see the three bumps that let the nurses line up the needle through the surface of my skin. It even shows up on some of my tighter T-shirts.

I had the port accessed once (for a CT scan) and the nurses said I had good blood return. That was just a trial run, though. Wednesday it’s showtime and I start chemo.

This entry was posted on July 23, 2013, in surgery and tagged .


So my biopsy was around lunch time on Tuesday, and I got a call early Thursday morning from the pathologist. That didn’t take long, which is usually the case when someone has a serious problem. Turns out the biopsy, both the breast and lymph node, were positive for invasive mammary carcinoma with lobular features. Great – now I have a name and I can start Googling some specific facts, instead of just the generic breast cancer information.

I was scheduled to meet Dr. Engel, the breast surgeon, the next day so we could start talking about treatment. Turns out the tumor was estrogen and progesterone negative, but HER2 positive. Not a great thing, since now I can’t use hormone therapy and HER2 positive cancer tend to be more aggressive. But, there is a drug (Herceptin) that treats HER2 positive breast cancer (improving five-year survival rates from 20% to 67%), and at least it isn’t triple negative.

Dr. Engel was very reassuring and willing to answer all our questions. I appreciate the fact that Erie, PA is a small enough city that I will have specific doctors on my cancer treatment team, as opposed to whoever available within the practice. At the same time, Erie’s big enough that we have some options for surgeons and specialists. Dr. Chan and his nurses recommended Dr. Engel. I had no prior information about the two breast surgeons in town, but I figured if I appreciated working with one team, I’d probably appreciate any doctor they could recommend.

After meeting with Dr. Engel, I had a bunch of tests and meetings scheduled. I will have surgery to put in a port so they can start chemotherapy ASAP. I also will get a breast MRI to look for any abnormalities in the left breast and a PET scan to see if there’s any spread throughout the body. I’ll meet with the nurse navigator and then the oncologists. Busy couple of weeks ahead.