Proton Beam, Cisplatin, and Spindle Cells: A Treatment Diary

Hi all,

Boy, it's been a bit of journey since my last forum post. I am happy to say I am now 1 week into treatment, and finally feeling well enough to post and update. Here's a quick recap of my story for those of you who haven't read the previous posts:

29yo; Feb of 2017 I had an extremely small superficial SCC lesion removed from the right side of my tongue - Stage 1. At the time, I was told this was all I would need (no rads, chemo, or neck dissection) along with careful monitoring. About a month ago Oct 2017, I noticed an extremely painful lump on the right side of my neck. Despite being on a course of antibiotics and steroids, it kept getting bigger and bigger. a CT scan two weeks out showed the lump was about 3.5cm and despite the fact that a biopsy came back negative, the decision was made to schedule surgery. The week between the CT scan and the surgery resulted in a 7.5cm mass in my neck along with two additional lymph nodes involved (both of these nodes had no capsular involvement). I lost my jugular, about 20% of my neck muscle, and my hypoglossal nerve which has paralyzed the right side of my tongue. Pathology showed that the tumor had spindle cell features, which apparently is both very rare and locally aggressive. After interviewing a number of oncologists in the NJ/NY area, we settled on Dr. Nancy Lee of Sloan Kettering due to her specialization in proton beam therapy and her experience in treating this type of cancer.

So, here's the update: after spending a wonderful Thanksgiving weekend with my wife and mother, I was mentally preparing myself for treatment. I was due to start treatment on the 4th, but had to be hospitalized due to extreme pain on the 29th. This was such an extreme pain, my whole body was convulsing and shaking. IV morphine alleviated the pain, but a subsequent CT scan showed a regrowth of a mass in my neck. Needless to say my oncologists became extremely worried, and ordered a followup CT/PET at memorial sloan manhattan the next day. The PET showed some local activity (thankfully no distant metastasis!) but two needle biopsies showed no cancerous cells. My Dr.s agreed that a definitive diagnosis at this point would not be helpful, as the regrowth was right where the radiation/chemo would be treating - Assume the worst and hope for the best. Needless to say, this experience scared the hell out of me and I am praying to be cured of this aggressive cancer. I was prescribed oxycodone, and the belief is that the new regrowth is pushing up against nerves in my neck.

I wanted to create a new thread, as I would also like to give a weekly update on how treatment is going. Hopefully this might help some people going through a similar experience, or at least highlight my experience as one possible outcome for treatment. Personally, it's also helpful for me to frame how treatment is going by writing it down.

Two things I think I have in my corner as an advantage - first, I am younger at 29. This is a double edged sword, because I know that if I survive this, I will be facing a lot of long term side effects, such as trismus and lymphedema. However, I think my age and general health profile (no serious issues, no cavities, no liver or kidney problems, etc.) will hopefully work to my advantage. I also like to believe (maybe I'm kidding myself!) that I have a high threshold for pain and can take a bit of a beating from the radiation chemo.

The second thing I think is going to work in my favor is the fact that I am receiving proton beam therapy instead of traditional IMRT. The research seems to be ongoing whether proton beam actually reduces side effects compared to IMRT, but in theory that's just what it is supposed to do. Proton beam therapy can control for depth, and drastically reduces the amount of scatter seen in IMRT therapy. While the jury is out on this from the medical research side of things, I am crossing my fingers that proton beam is the best choice moving forward. Clinical research is even suggesting that protons are so precise, that people who have been previously radiated with IMRT could possibly be reradiated with limited damage. That all sounds really promising to me! The only downside is that I am receiving quite a bit of radiation to my right throat, my tongue, and a lower dose to my left side, so the radiation field is wide.

The cisplatin scares the living heck out of me, and is another story entirely. Unfortunately, my med onc also used my age as a reason to do the full three doses of cisplatin, rather than any of the other platinum based chemos. He said it's the most effective chemo, and that if you can take all three doses, it considerably improves the possibility of cure. Apparently younger patients typically do better with the full three doses, with the exception of nausea. He also said the chemo would make the radiation much more powerful and destructive to the tissues being exposed. Kidney failure, hearing loss, and nerve pain going into my third decade of life doesn't sound so great, but it beats the alternative.

Anyway, those are my thoughts going into treatment. Below, I will try to post weekly updates about how everything is going. Fingers crossed that this knocks the cancer out and I look somewhat normal on the other side. Please keep me in your thoughts and prayers.

Week 1

Boy, the chemo absolutely wrecked me. Far more than I was anticipating. I did not throw up at all, but the nausea has been consistent, and intense. This is despite two followup days after chemo with IV fluids and steroids, and an entire cabinet of anti nausea medicine. I can't imagine what it was like to take cisplatin before these medications. The other bizarre (maybe not?) side effect was that I felt like I was in a thick fog for about 4-5 days. I am not sure if this was the chemo or the anti-nausea medications though. I would randomly fall asleep, and was barely coherent intermittently. This significantly reduced after day 5. No hearing issues yet and no nerve pain, although I am not sure this would be anticipated at this point. I am dreading the second infusion, because I hear that cisplatin is cumulative in nature, and this was already pretty bad. My stomach feels like it's spinning in circles, and I fluctuate between cramps, diarrhea, and constipation every 10 minutes.

As far as radiation goes, nothing too bad just yet. I have noticed that my neck feels a little stiff, and that my saliva is getting a little thicker. I wake up with a slightly dry mouth, but it is very manageable at this point. Nothing I would describe as pain. Actually, one of the more interesting turn of events is that the pain I was feeling when I was hospitalized has completely gone away after about 5 rad treatments. Because of this, I was able to get off of the oxycodone I had been prescribed. Could it be that the chemo/rads are already working? I am hesitant to agree with this so soon, but it certainly is wonderful to feel that pain go away.

The one noticeable side effect that I cannot necessarily pinpoint on either chemo or rads is that my taste is all messed up. Meat tastes like metal, salt isn't salty anymore, and food is just generally disappointing. Sweet tastes alright, but is very dull. This makes eating rather difficult, but I've been forcing myself to go through the motions. Scrambled eggs (not overcooked with plenty of butter) have a similar flavor, as well as mac n cheese. White breads are also helpful even if the taste isn't really there. For now, swallowing hasn't become much of an issue, so for a few days my wife has picked up some excellent bagel sandwiches for breakfast. If you are ever in NJ, do yourself a favor and get a pork roll, egg, and cheese on a bagel - it's quite good! I concede that it will eventually get to a point where I won't be able to swallow something like this, but in the meantime, I will eat what I can get down. Everything gets backed with a protein boosting drink and plenty of water.

Overall, so far everything has been manageable, but the chemo in particular has been a raging unpleasant experience. I know it's going to get far worse before it gets better, so I am bracing for the foot to drop in the next few weeks.

Week 2

Week 2 has taken some twists and turns. First, on Tuesday I had followup bloodwork with my medical oncologist. It turns out the cisplatin had raised my creatinine levels. They were at the upper threshold of normal, which my Dr. thinks is entirely reversable before the second dose of cisplatin. Unfortunately for me, this means that the entire week was spent receiving 2 liters of IV hydration a day to flush my kidneys. This really was an awful experience, because I don't have great veins and usually require multiple sticks to get the vein correctly. I swore to my Dr. that I was drinking about 5-6 bottles of water a day, but he seemed to think that I was still dehydrated. We'll see what my bloodwork winds up as next Tuesday, but if the creatinine is still high, they are going to IV hydrate me right into Christmas.

I feel like the cisplatin has left my system for the most part. I feel much more alert and awake than last week. Feeling better from the cisplatin has made me dread the second infusion that much more. The second infusion is on December 26th, so a late Christmas present for me.

The rads have considerably tightened up my neck and throat. Nothing I would describe as pain just yet. My saliva has been reduced, but it is still bearable at this point. My whole mouth has turned a white sickly color, my gums are a little sore, and my tongue hurts when I am doing my prescribed stretches.

Finally, activities that would have been simple prior to treatment leave me exhausted. We had a friend come over for a few hours, and after he left I had to lie down and nap for a bit. Cleaning around the house, going for walks, and even getting some work done on my computer all have a similar effect. It's not debilitating, but it is certainly noticable. I just listen to my body when it is saying to sleep.

Overall, week 2 certainly is ramping up, but I am still doing ok and I am able to eat, swallow, and drink without pain. I think I have more fear about what this is going to be like by week 4 or 5, and so that uncertainty of waiting to see where the shoe is going to drop is making me anxious.