Tuesday, January 29, 2019

Prepping for Proton Beam Radiation

I spent last Friday at a medical facility in New Jersey known as ProCure.  ProCure's sole line of business is proton beam radiation.  I'm not going to go into the technical details between standard photon beam radiation and proton beam radiation.  Let's just suffice to say that proton beam radiation is allegedly much more precise than photon beam radiation.  It is offered at fewer locations and it comes with a hefty price tag.  My insurance company fought the approval of this treatment, but they finally relented late last year, and I'm scheduled to have the treatments in February.

I am scheduled to have six sessions of proton beam therapy, starting on 2/11 and finishing on 2/18.  Because I'm having a limited number of doses, they will be high strength doses.  Proton beam therapy allegedly has fewer side effects than photon beam therapy, but I've been warned that my nausea will be worse for the duration of these treatments.  The doctor really wants me to focus on keeping my calorie intake up, so that I don't lose any more weight.

I have been able to eat more in the past 10 days or so, and that is encouraging.  I don't always pick healthy foods, but the doctors are insistent that any calories that I can get in are good.  I'm just supposed to eat.  Yesterday was probably my best day in quite a while.  I ate a ham and cheese sandwich for lunch, plus an egg and cheese burrito and some fruit for dinner.

My weight last Friday at ProCure was 164 pounds.  In August, I was at about 205 pounds.  So, I've lost 40 pounds in about 5 months - way too much.  The doctors have made a number of changes to my medicines to stimulate my appetite.  I'm taking a small dose of dexamethasone every day.  I'm taking an anti-depressant at night that has a sedating effect, which helps with nausea and hunger.  I'm supposed to be increasing my dose of medical marijuana, but I honestly don't feel like doing that one.  I already feel somewhat fuzzy from the pain medicines that I'm on, and I don't want to add the buzz from the weed as well.  But, I'm doing it when I can.

I'm not sure what will be next after the radiation.  The radiation is targeting two of the three tumors that I currently have.  The third tumor is in a "safe" space and does not appear to be growing.  The other two are in what the radiation oncologist described as a "deadly" zone, and we need to go after them.

I'm guessing that we will follow the radiation with some more chemo - probably a drug named Yondelis.  As an aside, the chemo drug that failed for me earlier this year - Lartruvo - has suddenly become the subject of a "cease and desist" order.  As people collated phase 3 trial results, it became obvious that there was no long term benefit from the drug.  What most people saw was a temporary shrinkage upon starting the drug and then a rapid return to baseline after 4-6 months.  So, that treatment time and cost seem to have been even more of a bust than I'd suspected.

So, in 12 days, my wife and I head south to New Jersey for a lovely winter vacation of ten days.  The facility is in a business park setting in the heart of big pharma country.  Let's just say there's not a lot to do.  I'll probably be feeling sick enough that it won't bother me, but I feel bad for my wife, who will use her precious vacation time to just hang out in NJ for 10 days.  I will work at least part time while I'm there, but it's easier for me to telecommute than it is for her.

After the treatments are over, I will need a few weeks to recover and regain my strength.  I am scheduled for a CT scan at Sloan Kettering in April, which will tell us how effective the radiation was.

I am still getting blood transfusions on a somewhat regular basis.  I'm not sure why my hemoglobin levels are so low, but I got two units of blood this past Sunday.  I'll probably need some more blood around the time that I do the radiation.

So, we know what we are doing next and it's time to execute it.  I'm hopeful that the doctors have accurate information for how to aim the proton beam, and that they hit the tumors precisely.  The better they hit the tumors, the lower my side effects will be, as the tumors aren't performing any necessary body functions.  If it's the tumors that we kill, I should feel better than if the radiation hits the surrounding healthy tissue.

The radiation oncologist joked last Friday that radiation can always eradicate a tumor.  But, the important thing is to eradicate the tumor without damaging the healthy tissue surrounding the tumor.  It does no good to kill the tumor if the treatment also kills the host.

Thursday, January 10, 2019

Another "pain event"

About 2 weeks ago, some pain in my abdomen started to get worse.  But, it was manageable with my pain meds, so I went about my normal business.

On New Year's Eve, about the 4th day of additional pain, I took an overall turn for the worse.  I had a fever (103F-105F) and the pain was getting worse.  I paged the on call oncology doc, and she literally told me to take two Tylenols and call her in the morning.  When I checked in the next morning, the doctor decided that I should go to the emergency room that was closest to me.

I'm not crazy about the closest ER, so I chose to go to the University of Vermont Medical Center instead.  That is where I get my local oncological care.

It took forever to get through triage, but once I got through, things kicked into high gear.  I got some morphine for the pain, and for the first time in almost a week, I was not in serious pain.  Then, the tests started.  Multiple CT scans (I don't even want to know my lifetime radiation exposure due to CT scans), a heart ultrasound, leg and arm ultrasounds, chest X-ray, etc.

The early scans showed that I had pneumonia in my right lung.  This was odd as I had no symptoms of pneumonia.  The CT scan of my lungs showed that I only had one tumor, and not multiples, as they had feared.  I was put on Lovenox to help prevent new clots from forming.  I will be self-injecting that drug for about 2 more weeks.

Next, we turned to pain management.  When I first arrived, it took 4.5mg of morphine to bring the pain under control.  The second dose was 6mg and I was still in pain.

The docs really drew a blank on the source of the pain.  They said it might be from the pneumonia or it might be from the cancer and a tumor growing.  There was nothing definitive.

Once again, as had happened in my last post, I was admitted and they sent out the pain specialists to work with me.  They decided to give me a bigger dose of oxycontin, and then morphine for breakthrough pain.  The morphine was administered by me using a pump, also known as Patient Controlled Anesthesia.  This combo worked well during the day, but it was a flop at night.  At night, I would doze off until the pain got worse and woke me up.  At first, I was waking up every 2 hours and I was allowed to hit the button every 30 minutes.  But, as time passed by, the time between hitting the pump steadily decreased.  Eventually, I was awake full time because the pain wasn't being controlled well enough.  I really needed to be on pills that would last longer or I needed to have the docs deliver the pain medicine on a fixed schedule through the PCA device.  But, that wasn't the purpose of the PCA.

So, we switched back to all oral meds, with some occasional morphine for breakthrough pain.  This allowed me to sleep in blocks of 2-3 hours at night and I felt much better.

By now, it was Friday morning.  I'd had my fever on Tuesday, and I went to the hospital on Wednesday.  We knew I had pneumonia and I was on meds for that.  We knew about he blood clot,  But, we still didn't know that cause of the pain.  Was it from the cancer or from the blood clot?  The docs were talking about sending me home on Friday, but I really resisted.  I felt that we didn't know enough yet, and going home would mean that we were just guessing as to what was wrong.  In the end, the docs agreed with me, and I was cleared to stay overnight on Friday night.

On Friday afternoon, I had an odd exchange with two doctors that I had never met before.  They were medical oncologists, but they had never treated me before.  They told me that the proton beam radiation with Sloan Kettering would not be happening, but they gave me no reason for this.  I tried to have a discussion with them about it, but they insisted that they were going to call Sloan Kettering, talk to my radiation oncologist, and get my radiation cancelled.  When I pressed them in their role in my care, they said that they were the attending oncologists and that this was their domain.  They didn't defer to my normal oncologist in any way.

I still don't have anything definitive, but I know that one of the docs did call Sloan Kettering to talk to my radiation oncologist there.  They left me a phone message without the name or number of the doctor, and asked me to call back.  I can't call back when I don' t know who it was that called me to begin with.  So, yesterday, I reached out to my local medical oncologist to see if she knew who these doctors are.  No answer so far, but I"m proceeding as if the radiation is going to take place.

On Saturday, after a 3 night stay, I agreed to go home.  I'm still fighting nausea and a lack of appetite, and the pain is still there, but it's more under control right now.

So, once again I'm dealing with an increase in pain medication.  My PCP no longer wants to supply my prescriptions as she feels my dose is too high for her to control.  I see my medical oncologist next week, and I'm going to ask her to take over management of my pain medications.

I'm still in the dark as to the cause of the pain.  I"m guessing that it's a tumor pressing on a nerve, but it could be the blood clot in the lung.  Blood clots in the lung can cause significant pain.

I go to NJ on 1/25 to meet with the docs at ProCure, the proton beam radiation center.  My radiation oncologist from Sloan Kettering will be there that day, to work with them on setting up the beam exactly the way he wants it to be delivered.

And, I have to hope that my pain dissipates or at least remains manageable.  I'm on the edge right now.