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.

Last Minute Detour! Surgery OUT. Proton Beam Radiation IN.

Chordoma, a very rare bone cancer, is a difficult beast to treat. It doesn't respond to chemotherapy, so that was never an option for me, nor was radiation since the location of the tumor (my sacrum) is too close to prime real estate (colon, nerve roots, bladder, rectum, ovaries, etc.) So, the only option I was ever given by my oncologists was surgery. "You have to have surgery. It's the only way", as my oncologist told me firmly the day I was diagnosed.

My initial reaction was a feeling that my oncologist was wrong. I had heard plenty about success with alternative or holistic treatments and I was a big believer. 

However, after the tumor had grown to be as big as a grapefruit, major fear set in and, as I mentioned in my previous post, I felt like I had no other options, especially with so much pain. I just wanted to get it out of me. But then, with all the delays in surgery, and the fact that it was taking so damn long for UCLA surgeons to put a date on the calendar, I started second-guessing the surgery option, and that ultimately led me to seeking treatments in Mexico. 

Even at the time of going down to Mexico, I figured that I was probably still going to have surgery. But a funny thing happened in Mexico, as funny things do tend to happen in Mexico. About one week into the treatments, the head oncologist, Dr. Contreras  asked to see me. With my IV bag still full of Vitamin C, I was escorted up to his fancy office on the 5th floor. A large corporate board meeting looking office. This was the second time I had sat across from him. Our first meeting, two days after my arrival, he had very few words for me. He kept shaking his head. My case was complicated to them and difficult to advise on. It wasn't so much that they had never had a patient with Chordoma, It had more to do with the fact that I had a very large and aggressive mass impinging on nerves, and an upcoming surgery that they were afraid to suggest delaying as they admitted that some cancers are stubborn and not all respond to their treatment. Yet I could see that he also had a hard time suggesting that I go through with the surgery. Not just any surgery. This surgery. 

So what exactly does this surgery involve? Let me spill the beans. It involves amputating my sacrum, severing most of my nerve roots and thus, total incontinence, cutting off my ability to have normal bowel and bladder function, with leg weakness and permanent neuropathy, oh and not to mention, possibly debilitating pain for the rest of life due to the fact that "sometimes nerves hold a grudge". Plus, the real possibility of a colostomy (google it. I had to. It's not pretty.), wound infection, sacral fractures, blood transfusion, etc. Later with the specialist at UCLA, there was the hardware. Rods and screws in my body for pelvic stability that would make it difficult for me to surf again. And on Aug. 20th, I learned what the real need for the plastic surgeon was. He would be there to take one of the two large core abdominal muscles that run down the front, detach it from my abdomen, and flip it through to the back side so that there would be enough flesh between the hardware and the skin. And the real kicker is that even after all that surgical nonsense, there's still a 40% chance of it coming back. 

So here, in Tijuana, Mexico, during my second week there, Dr. Contreras (who is also a surgeon and an oncologist) looks at me and says, "Have you considered proton beam therapy?"And I had. It is a radiation treatment that is usually used after the gruesome surgery to make sure "they got it all". It's used only for certain types of cancer (think brain cancer) in which traditional radiation would be too risky. Proton beam radiation is more targeted and does not exit the tumor like traditional photon radiation.

When I visited UCSD radiology oncology to inquire about it as a treatment option instead of surgery, the radiologist deterred me stating that surgery, and then proton beam therapy was my best bet for long-term survival according to all the studies. Well, the few studies they have. His reasoning: There haven't been any long-term studies on using proton beam radiation therapy instead of surgery to treat this, nothing beyond 5 years, so he couldn't recommend it for me. Plus, you have to use very high doses of proton radiation in order to treat chordomas with proton beam therapy only, which makes it very difficult for you to have surgery if it comes back. He also stated that proton beam therapy is better for more elder patients who are in their 70s and 80s and would have a harder time recovering from the aggressive surgery. I asked at UCLA and they also told me that it's almost impossible to find a surgeon that would operate on a patient after having only proton beam therapy (if it came back) because the would won't heal. They've tried, and it just doesn't heal. 

Dr. Contreras, however, told me that their treatment, the immunotherapy, or more specifically, the dendritic cell vaccine, coupled with radiation actually works well together. They actually work synergistically. Wow. I had no idea. Afterwards, I became busy researching whether it was true, reading a ton of scholarly articles trying to make sense of them. Despite not understanding all the medical jargon, the gist for all the articles that I read was the same. Radiotherapy and immunotherapy work together in tandem. I asked two other doctors who agreed and did their best to explain to me how it works, drawing pictures and visual representations of T-cells, apoptosis and antigens and all that. Then, during the last week at Oasis of Hope, Dr. Contreras and Dr. Cessenia, the 2 head doctors met with me for a final review before I was to go home. Dr. Contreras looked me straight in the eye and said, "If you were my daughter, this is what I would recommend". ("This" meaning the proton beam therapy and their immunotherapy treatments together instead of surgery.) 

A few days prior to this, I had finally gotten that call that I had been waiting and waiting and waiting for. My surgery date. August 31st, about one week away. Wow. But I still had to make sure of a few things before I canceled it. First, that my insurance would completely cover it. Second, that the radiologist at UCSD would still treat me even though he recommended surgery. And third, that I was still 100% sure that this is what I wanted to do. The clock is ticking. Decisions are rough. 

Long story short, affirmative to all three, but the radiologist wanted to do an MRI and a CT scan to get an assessment of the treatment and make sure there weren't any red flags in which he would want me to reconsider surgery instead of radiation. We made the appointments for that on Friday, Aug. 24th, one week before my surgery date, and he told me he'd get back to me by Monday on whether everything was a green light for the proton beam radiation. So I was to hold off on cancelling my surgery until then. 

Monday comes and he gives me the green light. That evening, 5 days before I was due to have surgery, I made the monumental decision. I cancelled it. Wow. Even now, a week later, I'm still haunted by the decision. It's hard not to go there and think, what if, what if? What if I would have had a better result? What if I made the wrong decision? I may never know.

80-90% of sacral chordoma patients choose the surgery. Most Chordoma experts would disagree with proton beam radiation in place of surgery, reasoning that given my age, my best odds for long-term survival is to have the surgery, since the radiation only approach has a higher re-occurence rate, though it's not that much higher. Yet, they don't say anything about the quality of life. I'm rolling the dice and choosing quality of life over quantity. I feel as if the surgeons, in order to get negative margins, would cut off my left leg and re-position my right leg in the middle and declare proudly, "We got it all!" without saying anything about the quality of life. I don't know the future, but I don't expect this to come back. Plus, with the immunotherapy treatments I had in Mexico, I'm hoping for good results.

I'm done reading the research and racking my brain over statistics involving my supposed fate. Statistics don't apply to me. I'm no doubt younger and healthier than the average person included in statistics of chordoma patients. Most are in their 50's or 60's when diagnosed. At the end of the day, I have to go with my gut. Plus, it's strange isn't it? The fact that my surgery kept getting delayed opened up a window of opportunity for the Mexico treatment ,which led me to reconsider proton beam and combine it with the immunotherapy treatment in Mexico. Plus, I still think it's significant that a random woman at Cafe Gratitude approached me to tell me her story about being cured of her cancer at the Mexican hospital, Oasis of Hope. And then I found out her name was Crystal! Was that not a sign? Or was it?

As of now, I haven't started my proton beam therapy treatments, but I will be starting them this week! I pray that everything goes well. In a separate post, I'll go into more detail about that treatment.

Please leave me a comment! Comments make me happy!! :)