Six-Month Followup

A year ago I had my last radiation treatment. It seems a long time ago.

On Wednesday I had a follow-up appointment with my oncologist. She's on maternity leave, so I saw a physician's assistant instead. Kaiser seems to use a lot of PAs. I would have preferred to see my oncologist, but the PA I saw seemed knowledgeable and was able to answer all my questions. Everything's normal. No new lumps. My next follow-up appointment is in six months.

The joint pain I was experiencing peaked in May. It's now considerably better although I still get a lot of stiffness after sitting down. My thigh muscles are also weak. I have trouble getting up and down from a crouch. It started in the fall and got worse starting in January. I wasn't sure at first that I was experiencing muscle weakness because there was no reason for it. But it's listed as a side effect of aromatase inhibitors. Going up and down the stairs to strengthen my quads didn't seem to help, but taking the stairs two steps at a time did. I no longer feel I'll one day be stuck on the floor unable to get up.

A new development is occasional nerve pain in my hands and feet (mostly left hand and right foot). The first time I experienced it, it felt like a jolt of electricity in the base of two fingers. So far the pain lasts only a few seconds at a time and doesn't come often. But I'd prefer not to get it at all. I also get pain in my chest, mostly in the area affected by surgery.

After my port was taken out, I got a large area of hard scar tissue. I'm guessing it was about 1.5" diameter. I subconsciously kept massaging the area, and now the hard area is only about half an inch in diameter.

Joint Pain

For a few months now, I've been experiencing slight hip pain. I also noticed that I'd wake up with pain in my finger joints. A couple of months ago, the pain in my hips got a lot worse. I'd have trouble getting out of bed. Going downstairs, I'd have to do it two-footed. However, the pain would go away after a few minutes of movement.

I felt like I was 80 years old. I thought for sure I had arthritis. Then I found an article saying that up to 50% of women on aromatase inhibitors (AI) experience joint pain. They can also experience muscle pain. Several months ago, possibly around the time I started taking AI, I noticed I had difficulty getting up from a crouched position. It's not clear to me whether it's due to pain or weakness in my thigh muscles.

About a week ago, the joint pain started easing up a bit. I can get up from bed almost like a normal person and don't have to walk two-footed down the stairs anymore. But it still hurts climbing into bed and getting in and out of my car. For the first couple of minutes afterward, I walk funny. Getting up from a crouched position, like when putting on my shoes, is still difficult. And sometimes when I wake up in the middle of the night, my left hip hurts when I move my legs.

According to the article I read, the pain goes away for most women by 18 months. I'm only 8 months into my AI therapy, and I'm supposed to take the pill (anastrozole) for five years.

Shoulder Still Frozen

Had my fifth physical therapy session on Tuesday. There's been no improvement in sideways motion of my shoulder, so I decided to stop the sessions. I'm hoping my shoulder will suddenly go back to normal this summer when it will have been two years since my frozen shoulder started. If not, I'll either request PT or see an orthopedist again. I had an x-ray done in February and saw an orthopedist then, but nothing out of the ordinary was found.

Lingering Side Effects

 It's been almost six weeks since my last Kadcyla infusion, but I still have some lingering side effects.

• Runny nose. My nose has always been runny, but it got worse with chemo and Kadcyla. It has eased up now but is still worse than normal. Occasionally I get a little bleeding.
• Split nails. My nails have gotten brittle and split quite often. I think I even lost the nail in my little toe but didn't notice till it had grown back. I bought a bottle of nail treatment with keratin that's applied like nail polish. It even smells like nail polish. It flakes off easily though, and I have to reapply it every couple of days.
• Acid reflux. I had been taking omeprazole (Prilosec) daily for a year and decided to stop a few weeks after my last Kadcyla. But I still get acid reflux, and now I burp a lot. So I'm back on omeprazole for a while.
• Bleeding gums. Not sure if Kadcyla is to blame for this. In the past when I'd notice bleeding, it goes away after a day or two. But for the past year, it happens quite often and in more than one location, and it takes a while to go away.
• Styes. I got a lot of styes from chemo and Kadcyla. I thought it had stopped, but I got another one a couple of weeks ago. Again, I don't know if Kadcyla is to blame for the latest stye.

I used to get fatigue after every infusion. At least it's gone now.

Port Removal

On February 28, my port was removed. They refer to the removal as a procedure, not minor surgery. But it was done in a surgical room by a PA, and I was prepped as if for surgery, complete with heart rate monitor and continuous blood pressure monitor. The only difference from surgery is that it was done under local anesthesia. 

Lidocaine injections are very painful, so I applied EMLA cream to my port area two hours before the procedure, hoping it would help with the pain. I thought it did initially, but at one point I went, "Ow!" when the PA injected the lidocaine too fast.

The procedure was like this except it took much longer, maybe 15-20 minutes. Because I've had the port for 15 months, a lot of tissue had grown around it, and the PA took her time removing it to avoid breaking the port.

I was nervous about the procedure and cried a bit at the beginning. Then I spent the rest of the time trembling in fear. A sheet was placed over my head, so I couldn't see what was happening, but I knew what was happening (thanks to the video 😛), and it scared me. If the PA noticed my shaking, she didn't say anything.

To close me up, she put in "a couple" of internal stitches. I think it was more like half a dozen. Then she applied glue on my skin. No bandage needed.

I didn't have much pain afterward. I took Tylenol at first, but in the evening, Tylenol wasn't helping, so I took Advil instead. One more Tylenol the next morning, and that was it. No more pain after 24 hours.

Last Infusion

My last infusion was on February 14. Just like traditional chemo, the side effects from Kadcyla are cumulative. I was mostly tired and slept a lot for the next week or so. The last couple of days I've been burping a lot too even though I still take omeprazole (Prilosec) daily. 

I was also given a dose Zometa. No side effects unlike the first time.

Tomorrow they will remove my port. Dreading the procedure. I hope it's not painful.

Busy January

I suppose I should update. Due to omicron, I put myself on lockdown for the month of January except for doctor's visits. Unfortunately I had many appointments in January:

2 blood draws
2 infusions
1 oncologist visit
1 echocardiogram
1 pap smear (cancelled after I checked in)
1 ultrasound
1 mammogram

In addition, there were also five other visits: twice to PAMF and twice to Stanford to get CDs of the mammograms and ultrasounds done at those facilities, and one visit to Kaiser to deliver the CDs. Even though all three facilities use Epic Systems for their medical records, they don't share the mammo & ultrasound files because they're too big.

I was due for a follow-up screening mammo in January, but it got changed to a 3D diagnostic mammo and ultrasound because I was concerned about recent skin changes on my breast -- darkened and scaly skin. They may be delayed effects of radiation. I also noticed a lump below my incision. It may be just scar tissue. The tests didn't show anything of concern.

After my last infusion, I felt very slight nausea off and on for two days. I always get Zofran before the infusion. It was only recently that I started feeling some nausea. It's happened only one other time, I believe in December.

That was #13 out of 14 infusions. Just one more left.