Proton Beam Therapy

Hello friends! I want to dedicate this post to talking about Proton Beam Therapy and how my treatment is treating me.

First of all, Proton Beam Radiation therapy (PBT) is a more targeted form of radiation that uses protons instead of photons. The big benefit of PBT is that the dose will not go beyond the tumor and damage surrounding tissue. This type of radiation is most commonly used with brain tumors, but other cancers such as breast and prostate cancers can also be treated with PBT.

I am doing definitive radiation, which means radiation only--no surgery. The unfortunate thing is that because chordomas are such resistant tumors, it takes very high doses (77-80Gy) to treat the tumor with definitive radiation. As far as side effects, I was to expect a severe "sunburn" by the time radiation is finished. There were other side effect mentioned as we were going over the paperwork. Less likely side effects included damage to the colon, nerves, ovaries, etc, There are no guarantees and even though this is a more targeted radiation, side effects can still be severe and at times, devastating. However, there were still less chance of encountering these side effects with radiation than with surgery.

I asked about the worst case scenario. What would be the worst that could happen? My radiologist stated that the worst case scenario is that it continues to grow right through the treatment, but that is very, very rare, he assured me.

I read in one article that most patients can work throughout their treatment. You just come in for 30 minutes each day Monday-Friday, get your zap, and go back to work. Easy. Sinch. I spoke with four other Chordoma patients who I found through Facebook that had also done proton beam therapy. All four of them told me that they were happy with their decision to not do surgery. They suffered very few side effects from the treatment, and were living their lives happily.

After we went over all the side effects, the radiologist mentioned that at the start of treatment, there sometimes is an inflammatory response, some swelling that may cause pain for some people. If that's the case he prescribes a steroid (prednisone) for a few days just to ease the swelling. But he didn't see that happening in my case. The worst was just to expect a painful burn at the radiation site (sacrum) towards the end of treatment. I signed all the papers, and was ready to start treatment. My treatment dose would be 80Gy (extremely high for radiation) for 8 weeks, Monday through Friday.

I had no idea what I was in store for.

Nobody, not even the doctors, expected me to be in THIS MUCH PAIN. The first week was fine, but towards the second week I started to feel as if someone was swinging a bat at my lower back. So with reluctance, but wanting relief from the pain, on to steroids I go. On Friday of week 2, I didn't show up for treatment. I was having a hard time. Pain, sciatic pain. Was I supposed to be in this much pain? Is this my body's way of screaming that I'm on the wrong path? If this is what I'm feeling in week 2, how will I be feeling in week 8? How will I make it through?

On Thursday of week 2, I told my oncologist I needed the day off and I'd be back Monday. I expected the pain to get better over the weekend, but it didn't. It got worse. The steroids weren't helping me out. This is mostly nerve pain. After trying everything to relieve pain...meditation, guided imagery, hot baths, CBD, THC, upping my dose of narcotics, taking them more frequently, until, I couldn't take the pain. Nothing was helping, so I ended up in the ER at 2am.  I was put on morphine for 3 hours which was total heaven. I finally had full pain relief for the first time in weeks. I didn't want to leave, but I knew Mutsu was tired,  just sitting in a stiff chair after watching me sleep like a baby for 3 hours.

We went home Sunday morning. By Sunday afternoon, the same pain was back. Mutsu drove me to the ER and on the way there I started stating affirmations "I'm feeling better. I'm feeling better. I'm getting better" over and over. By the time Mutsu pulled into the parking lot of the ER, I WAS feeling better. The edible that I had taken a couple hours ago had just kicked in. I got out of the car to walk around for a few minutes and said, "no, take me back home". I figured I could just try to get through with more edibles.

Come week 3 Monday, I wake up and swear that I can't do it anymore the pain is too intense. I can barely walk. Every step is painful. I can't stand for more than a couple minutes. I try making myself a smoothie, then half-way through having to hobble over to my bed for some relief. I can no longer make meals for myself, or do anything that involves standing for a long time, or walking more than a few steps. I feel like my 35 year-old-body woke up the next day with a 95 year old body.

Nevertheless, I drag myself to the car and go anyway to PBT. They see me limping and send me to the nurse before treatment. I then met with the doctor whose solution is dexamethasone, a heavy duty steroid. He prescribes it for just 4 days to get the tumor swelling down fast. I asked him, "Should I still continue with the treatment? Is this too much?" He advises me to soldier on with the radiation treatments because interruptions in the treatment make it less effective.

Tuesday, I wake up and tell myself, "there's no way I can do this anymore". The pain is too much. But after a few hours, I'm feeling a little better. So I go. After treatment, I met with another doctor (my doc is out of town). He told me I was right for choosing PBT....the surgery is awful. He was convincing me to stay, saying that this is the best chance for cure, for success. Keep taking the pain meds. Everything's going to be alright.

I met with the dietician, Kate, who I meet with every Tuesday. We talk about anything except food. In our first session, she just wanted to make sure I was getting enough protein, good quality proteins for healing, and the rest of the time, our sessions have been more like psychotherapy. She asks how I'm feeling emotionally, and I just let it all out. The tears, the worries, the fears, the ups and downs. She convinces me to keep going. "Just surrender to the experience".

Wednesday is just like Tuesday. I limp through the doors of the California protons center holding onto Mutsu. The nurse, Melissa is really starting to become concerned. I meet with the doctor again after treatment who wants me to stay on the heavy duty steroid instead of tapering it off. He's convinced that it'll help with the pain. So far it hasn't been helping me, but I don't want the pain to be worse if I stop taking it. From meeting with the docs, I start to get the feeling that the pain might not go away so soon. It may take longer than I had expected for it to shrink.

Initially I was told by my oncologist that he expected me to be feeling less pain in 2-3 weeks, but here I am in much more pain. The pain they attribute to the inflammation, the fact that the tumor is so big and pressing on nerves.

Friday morning, I wake up after having only gotten 2-3 hours of sleep that night and write an email to my oncologist telling him that I quit. I can't take it anymore. My body can't take it anymore. My pain is worse every day.

After a few hours, he calls me, says he's gotten a hold of my Kaiser primary care doctor, and the pain management doc from Kaiser and was able to get me a prescription for morphine. I really didn't think it would make a difference. Every pain medication that I was given didn't seem to do much. But I figured I'd try it.

It helped. Not a lot. I still have trouble standing for more than a few minutes, but I can get up much more easily and walk a little more without the pain. I am having much less sciatic pain. Mutsu noticed a big difference in my mood as well. I still feel confined to my bed, but things are looking up and it's doing a lot for my morale.

Prior to last week, I was walking an hour a day, doing yoga and meditating. Now I can barely walk. Standing for more than a couple minutes is difficult. But I'm having lots of friends come by and lots of help to help me get through this. I can only take it a day at a time. I can't think about the future right now.