Moving on

Since my last post, I think I managed to hit a nadir and I've gradually turned things around.

Let me catch you up.

So, insurance still has not approved, nor have they officially denied, my request for proton beam radiation.  But, I simply can't wait anymore.  Things have been getting worse and it was time for action.

Since I last posted, the pain issue really exploded.  My pain levels were drastically increasing and my pain medications just weren't keeping up.  It really peaked on a Monday and I had to call in sick.  I couldn't get in to see my primary care provider, so she suggested that I visit the Emergency Department at our local hospital instead.  So, I did that.  I spent about 5 hours there, and at the end, they just threw a new prescription at me for a slightly stronger pain medication and they sent me home.  I was supposed to follow up with my PCP on the pain medicine.

So, the next day, I called in sick again and used the new pain medicines.  They didn't help.  By now, my PCP had given me her cell phone number and she and I were texting back and forth.  On Wednesday morning, when things weren't better, she suggested that I go to the ED at one of the two teaching hospitals in our region.  Since my wife and I work in Burlington, I had my wife take me to the ED at the University of Vermont Medical Center.  I ended up spending the entire day there.

The first thing they did was just try to get my pain levels under control.  It took two injections of morphine to establish a baseline level of control.  Four hours later, it took three more injections to keep things under control.  But, the good thing about this hospital vs. the one I visited on Monday is that they wanted to figure out why my pain levels were so much higher.  They did some imaging and found that my tumors had grown significantly since August.  The larger tumors were creating pressure on nerves and that was causing the pain.

Late in the day, the doctor I'd been working with (Dr. Claus - the poor guy must have been tortured his whole life for that name) suggested two options.  The first was that he could take a guess at a prescription that would work going forward and send me home.  Or, I could be admitted and have a pain specialist from the oncology clinic work with me to establish control of the pain.  He offered them to me as almost a 50-50 choice, assuming that I was averse to being admitted.  But, to me it was a no-brainer and I chose to be admitted.  That afternoon, before they could even admit me, I was interviewed by two pain specialists.  They knew about the tumor growth.

By the time I'd been admitted, they had a plan they wanted to try - Oxycontin with oxycodone for breakthrough pain.  I've found out since then that there is a lot of controversy about whether or not Oxycontin really works for the full 12 hours as advertised.  In something like half of all patients, it works for less than 12 hours, and it needs to be supplemented with other pain medications.  So, we started the Oxycontin on Wednesday night and I was able to sleep through the night for the first time in a while.

On Thursday, the doctors seemed quite happy with themselves, having found something that worked so quickly.  I was discharged late Thursday afternoon with 2 new prescriptions.  I was happy that we had a solution.  Until, that is, we reached the pharmacy.  It turned out that Oxycontin isn't covered by my insurance.  I had two options - pay $541 out of pocket or pay for a lesser amount that I could choose.  But, if I chose a lesser amount, the rest of the prescription would be invalid.  I was torn.  I knew that if I didn't fill the prescription, I'd end up back in the hospital.  I felt like it would be justice for my insurance company to have to pay for the re-admission if they refused to pay for the medication.  But, I'm not truly that petty, I didn't want to go back to the hospital, and I wanted the pain to be gone, so I paid the money.

In the end, it turned out that, with prior approval, my insurance company will pay for the brand name Oxycontin, but not the generic.  I've now gotten that prior approval, and my local pharmacy is carrying the brand name just for my needs.  That's one advantage of living in a small town, where the pharmacists know me and my condition well.  They are willing to change their stock just to help my needs.  And, UVMMC turned over my co-pay issue to a social worker.  Through a grant, I got back about 60% of the cost of the prescription.

So, I now had my pain under control.  But, these new pain meds mean that I can't really drive anymore, which has created a new burden for my wife.  She had always been the driver on our commute, but I usually dropped her off in the morning and took the car for the day.  She is now dropping me off, and she needs to come with me on every medical appointment.  I feel bad for the burden on her, but I'm not going to risk driving with pain meds in my system.

So, with the pain under control, I still had two issues to fight.  First, I needed to get treatment re-started.  It's been two months since I found out that the last treatment failed - two months of allowing my tumors to grow without fighting back.  At this point in time, I have to assume that the proton beam therapy is not going to happen, and we need to start a systemic treatment as an alternative.  And, I had to work on my nausea, which had been getting worse by the day.

First, let's talk about treatments.  When I was last at Sloan Kettering, the medical oncologist that I see there had suggested a drug called Eribulin.  It is an older drug that's been around for a while and I think it's often used in breast cancer treatment.  My local medical oncologist had suggested Trabectidin, which is a newer drug that is specific to sarcomas, if not just liposarcoma.

As the prospects for the proton beam therapy dropped, and my symptoms began to increase, I started to rely more and more on my local medical oncologist.  She scheduled me for a CT scan on Wednesday of this week.  That was followed by an appointment yesterday - Thursday.  In the appointment, she said she was fine using either of the drugs, but that she'd gone along with the Sloan Kettering recommendation and scheduled me to start Eribulin immediately.

I had no qualms with that.  I am concerned that Eribulin tends to have more side effects than Trabecticin, but that isn't the most important thing right now.  Getting started with a treatment was the most important thing.  So, I did have a treatment yesterday and I'm now on Eribulin.  It's given in a 21 day cycle, with infusions on days 1 and 8 and a Neulasta injection on day 9.  I will probably end up doing the Neulasta with their OnPro technology - a high-tech patch that goes on your arm at the end of chemo and does the injection automatically 24 hours later.

So, treatment is taken care of for now.

The nausea problem peaked last weekend.  It got to the point where I vomited from the nausea 3 days in a row, and I was barely eating anything.  I was resorting to milk shakes made with Ensure just to get some calories into my system.  Most days, I was able to eat fewer than 1000 calories.  At my appointment yesterday, I found out that my weight has dropped almost 20 pounds since August.

Early this week, the doctor had me greatly increase my dosage of Compazine, an anti-nausea drug that I have a prescription for during chemo.  I was taking it once a day at 5mg.  They had me start taking 10mg every six hours and the nausea now seems to be at bay.  I had a bit of nausea this morning, the day after chemo, but not so bad that I vomited.

Hopefully, the chemo won't increase the nausea beyond manageable levels.

So, that's it.  Pain is under control.  Nausea is under control.  And, I've started a new treatment.  Now, we wait and hope the treatment works.