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.

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