Radiation Therapy Skin Care

Radiation therapy has many side effects, among them skin changes, fatigue and pneumonitis. The skin changes include redness, itching, burning, soreness, peeling, blisters, or darkening of the skin. I'd like to avoid all of them. Besides using moisturizers 3x a day, it's recommended that you wear loose clothing, use fragrance-free soap, and avoid scrubbing in the shower. Even a washcloth is not gentle enough.

I found an article that lists moisturizers/creams used by a group of patients (Table 8). The most commonly used ones are mometasone, Aquaphor, and Eucerin. I have all three and more.

Clinical studies showed that the prescription steroid cream mometasone furoate works well on radiation dermatitis, so I asked for a prescription. I've been applying the cream twice a day but found out I can refill my prescription only once a month. I received three of the little tubes in the photo. At 2x a day, a tube lasts less than a week. I'm going to have to cut back to once a day to make the cream last longer.

I saw my radiation oncologist today, Dr. Horst (switched over from Dr. Salem who had gone on medical leave), and she said I can also use triamcinolone, another prescription steroid cream. I happened to have a big jar of it from when I had a rash on my arm. I haven't seen clinical studies showing the effectiveness of triamcinolone on radiation dermatitis, so I hope it does work as well as mometasone.

At Stanford I apply mometasone and Eucerin immediately after my radiation session. I've noticed that my chest is slightly red after these sessions. I use a spatula to help apply cream and lotion to my back, which can also experience skin changes.

I'm going to change up my routine. Before bed, I will apply more steroid cream (switching to triamcinolone) and moisturizer (coconut oil with lavender essential oil). In the morning I'll apply calendula cream and moisturizer (either coconut oil or Eucerin). After a shower, I'll use triamcinolone and Eucerin. I'll hold off on using Aquaphor unless my skin gets really dry or worse.

They say it will take at least two weeks before I see skin changes, but I already see redness and darkening of my skin. When my radiation therapy ends, I could see worsening side effects for another two weeks and will have to continue my skin care routine.

Today was session #8. Seventeen more to go.

Acupuncture

I started acupuncture last week for my frozen shoulder and have had two sessions so far. The doctor starts out by manipulating my shoulder and elbow joints. He does it very slowly and gently. Sometimes he does it with his eyes closed, as if he's meditating. I keep thinking he's falling asleep.

Next step is inserting the needles. He doesn't want to put them in my shoulder because it's the same side as my surgery. Instead he uses my left leg, just three needles in my lower leg. It doesn't hurt when he inserts them. Then he leaves me for a while after instructing me to do some stretches.

The only difference I've seen so far is that my arm can reach a little higher. I don't know if it's due to acupuncture or the physical therapy I continue to do once a week. I still can't raise my arm sideways beyond shoulder level.

Slower Infusion

I had three appointments today -- radiation session #4, a blood draw, and T-DM1 infusion #3. I arrived at 1pm and didn't leave till 7pm.

After my first T-DM1 infusion six weeks ago, I had three instances of neuropathy. After my second infusion, I had over 50 instances. Almost all of them were very brief, lasting only a second or two, and mostly on my hands and feet. While tolerable, I'd prefer not to have any pain at all, especially since the neuropathy can become permanent.

A person in my support group suggested slowing down the infusion to 90 minutes and also receiving normal saline for the duration. That makes sense. My first infusion was 90 minutes long so that the nurse can observe me for reactions to the new drug, and I had very few neuropathy episodes. The second infusion, however, was much faster at only 30 minutes. 

So a few days ago I sent a message to my doctor's staff asking that the infusion be slowed down. That means they had to extend my infusion appointment from 2 hours to 4 hours. It took 3.5 hours today, partly because they were 20 minutes late getting started. They always give me Zofran before the infusion. 

All those fluids meant I had to use the bathroom several times. It's no fun having to get out of bed, put on my shoes, unplug the IV pump, and carefully roll it with me to the restroom.

My blood work showed that my potassium was low again. I don't know why it was low. I had to take two big potassium pills. I managed not to gag or get the pills stuck in my throat.

Radiation Therapy #1

Today was the first of my 25 radiotherapy sessions. I was scheduled for 45 minutes, but I think it took only 30 minutes. They had created a mold from the planning session I had last week. The mold holds my body in exactly the same position for each of my sessions. For this first session, the first step was to do x-rays, then they did the radiation.

My tumor was on the left side, so the radiation was aimed at that side. But my heart and lung are also there. While receiving radiation, I had to take a deep breath and hold it for about 20-30 seconds. I did this maybe 3-4 times. The machine, which is a linear accelerator, was repositioned each time -- right side, above, and left side.

The radiation oncology nurse told me afterward that out of the 40 Gy dose I received, about 5 Gy are absorbed by my heart and lung despite the breath hold technique. I don't know what kind of damage that will do to my heart, but I could get pneumonitis in my lung, treatable with steroids.

The nurse also said that I might feel pinching in my breast due to the radiation. It's actually nerve pain. I felt some in the first hour and again a couple of hours later. Great. As if I don't get enough nerve pain from T-DM1.

Bone Density Test

When I finish my radiation therapy, my oncologist will start me on aromatase inhibitor pills. One of its side effects is bone loss. She ordered a bone density test to establish a baseline. I had the test done today and already have the result. 

I have osteoporosis. 😲😲😲

Radiotherapy Planning Session

I had a radiotherapy planning session yesterday. They had me lie on my back and position my arms above my head. I was lying on a sheet, and they pulled the sheet this way and that way to get me into the right position and used pads to hold me in place. I have to be in the exact same position for each of my radiation therapy sessions.

My left shoulder started hurting just a couple of minutes into this. They repositioned my hand on my head and added more pads to support my arm. I couldn't move my elbow low enough because my shoulder is still partially frozen. I hope my arm doesn't get radiated.

They used a marker to draw three marks on my chest -- left, center and right. The marks are used to align the machine when I get my treatment. The marks were covered with clear bandage to keep them from wearing off. In the past they used to tattoo patients. I'm glad they've stopped doing this.

The last step was to get a CT scan. It took only a few minutes.

My radiotherapy is scheduled to begin next Tuesday. The therapy is Monday to Friday for five weeks. Because of my shoulder problem, I wanted to postpone my therapy for another week. But Stanford will require me to get another covid test, so I said forget it.

T-DM1 Session #2

I saw an oncologist appointment two Fridays ago followed by my second T-DM1 infusion. The only remarkable thing about the infusion is that when I arrived for my appointment, I was told it was in Redwood City, not Palo Alto. All my previous infusions had been in Palo Alto. I didn't even know they had an infusion center in Redwood City. Anyway, I was an hour late for my appointment.

I told my doctor I got intermittent but very brief nerve pain in my right hand and right foot after my first infusion. The day after my second infusion, I suddenly had intense pain in my right middle finger. It felt like an electric shock. Several seconds later it felt like I got stabbed with a large needle in the same finger. It happened a second time and made me flinch. I've had several other episodes that were a lot less painful, most of them lasting only a second or two.

I've been applying cold packs to my hands and feet during my infusions to help prevent peripheral neuropathy from T-DM1. Looks like I have to be make sure all my fingers and toes get very cold.