Tuesday, May 22, 2018

Chemo just plain sucks

On the way in to work this morning, I heard the J. Geils Band's song "Love Stinks".  All I could think as I heard those words sung over and over was "Chemo sucks".

In some ways, maybe I could even call it luck, it's been a couple years since I've been on a truly cytotoxic chemo regimen.  I did gemcitabine and taxotere about 15 months ago, but the side effects there are just nothing compared to doxorubicin, which is what I'm doing now.

I think I was in the infusion clinic for close to 7 hours last Friday.  First, I had lab-work done.  Then, met with my doctor.  Then, the endless infusions of medications.  Benadryl.  One to protect my heart from the doxorubicin.  Then, two different long acting anti-nausea meds.  Then, dexamethasone, which I need to take slowly due to a sensitivity to the that one.  I basically passed out the first time I had IV dex, and they've since discovered that I'm OK if infused over an hour rather than 10-15 minutes.  And then finally, one chemo drug and then another.

I spent most of the weekend flat on my back on the couch, with no appetite at all.  I managed to get down a milk shake each day as my only source of calories, plus I tried to get plenty of fluids.  I wanted to get out and go fly fishing but it just wasn't in the cards.

I have three different medications for nausea at my disposal - Zofran, compazine and lorazepam.  Of those three drugs, two are known to cause hiccups in some people, while the third, compazine, is sometimes used to try to alleviate hiccups.  Yet, I seem to be getting hours-long hiccup attacks (every six seconds for hours at a time) while on the compazine, which seems completely backwards to me.  My last two nights of sleep have been interrupted by hours of hiccups.

I'm still feeling pretty rough mentally.  If you've never heard to term "chemo brain", let me assure you that it's a real phenomenon, and working in IT, it makes the work day difficult.  I have two meds to help with the fatigue and chemo brain and they help, but I'm just not quite my normal sharp self.

I did have an appointment with a specialist on Monday due to persistent concerns about my one remaining kidney.  I lost a kidney when my original liposarcoma tumor was removed, and about 15 months ago, my kidney health readings (a test known as eGFR) started to decline.  The number should ideally be about 90, although with one lost kidney, it's rare to see numbers above 70.  But, mine have been ranging from 36-43 for the past 15 months.  Higher scores are better with this lab test, as it's an estimate of how fast your body can excrete excess creatinine in the blood.

Amazingly, last Friday, before chemo started, my eGFR was at 56 - the highest it's been in those last 15 months.  Yesterday, I saw a nephrologist.  He had mapped my eGFR scores against my various cancer drugs for the past 15 months.  What he saw was a pattern of two drugs negatively influencing my kidney function.  If he was right, he said my kidney function should be rebounding, which is exactly what we'd seen the previous Friday.  So, for now, that is one less thing to worry about.  He said he thinks I'm fine and I don't need to return to see him unless the scores become depressed again.

I did manage to make it to the gym last night.  I had to scale the workout somewhat, mostly to keep nausea at bay, but I was able to do the workout at about 75% of my normal capacity.  I was able to eat some solid food when I got home last night.

Today, my thought patterns are still a little bit scrambled.  It's like I'm living underwater - everything just happens slowly and I can't seem to operate at full speed.  But, it will get better day after day, I should soon be back to normal.

This coming Friday, I still have chemo, but not the doxorubicin.  Hopefully, I'll feel a lot better this coming weekend than I felt last weekend.  And maybe, no hiccup attacks.

If the weather holds, maybe I'll even get the lawn mowed and get in some fly fishing over the holiday weekend.

Tuesday, May 8, 2018

A Change in Direction

I was at Sloan Kettering this past Tuesday.  Regretfully, a CT scan showed that the two tiny tumors in my abdomen have grown in the past three months.  The verdict was that the growth is statistically significant, and that the Ibrance is no longer working.  I'd been on Ibrance for six months, and it has a median progression free survival period of 18 weeks.  So, I got about that much time out of the medication before the tumors resumed their growth.

I did complain to the doctors that my pain level has increased in the past few weeks.  They believe it's because one of the tumors, which is sitting against my rear rib-cage, is probably pushing on a nerve.  They suggested two options to deal with the pain, and left it up to my primary care provider and I to decide.

I sent an email to my PCP and she immediately agreed with my preferred option.  The change has worked well and the pain is not bothering me as much as it had the few previous weeks.

The doctors at Sloan Kettering described this entire ordeal as a marathon.  They said that I am literally not sick right now.  I'm in good health, I feel good, I'm training reasonably well, and the disease is not impeding my life at all.  At the same time, it's important to prevent those two tumors from growing further.

The tumors are so small that surgery was not the recommended option.  Instead, they want to try a 12 week run of chemotherapy.  This time, it will be a combo of Doxorubicin (the first chemo agent I had, and I responded very well to it) combined with Lartruvo.  Lartruvo is in a category of drugs known as biologics, and when paired with Doxorubicin, it seems to amplify the effects of that drug.  Patients who take the combination of the two drugs statistically lived twice as long after treatment as though who got Doxorubicin without the Lartruvo.

The doctors described the current state of my disease as being in the early stages of a marathon.  Yes, we've used up one magic bullet with Ibrance.  After four more rounds of Doxorubicin, I will be at my lifetime limit for that drug.  But, there are still many more options out there, plus I'm sure we will do surgery again in the future.

I am hopeful that the combo of the two drugs will substantially shrink, or perhaps kill, the two small tumors that I have.  Doxorubicin worked very well last time, and if Lartruvo makes it work even better, I should experience significant shrinkage in two tumors that are already small.  If that happens, I will hopefully enter a period of time where I won't have any treatments at all.  Also, shrinking the tumor in the back will hopefully reduce my pain level.

So, while this was a setback, it's not a huge issue.  Yes, it would have been nice to be one of the lucky few for whom Ibrance works a long time.  But, that didn't happen.   At the same time, my tumor load is small and I'm fairly healthy.

On the downside, Doxorubicin is a nasty true cytotoxic chemo.  My hair will fall out.  I will be nauseous and tired.

On top of this, I started a new job in February, and I had to tell my employers about the cancer because of the chemo.  So far, I've been overwhelmed by the support I've gotten at work, the response to my plan to minimize the impact on work (I'm going to do chemo on Fridays so that I can rest on the weekends, maybe work from home on Mondays, and otherwise hopefully feel pretty good throughout the process), and just the good will I've felt from the senior management in the company.

I was very concerned about telling people here, considering that I'm still the new guy, but I think that things are going to be OK.  My biggest concern is that I'll be be too tired on the weekends to do much fly fishing.  Our season is off to a terrible start, with a cold April, rivers running high, and I haven't fished even once yet.  The forecast for this coming Saturday is looking dismal and I might not get out again this weekend.  But, I'll get out pretty soon.

So, on to a new chapter.  I'm not thrilled at taking this drug again, but it's what I need to do.  So, I'll muddle through.  Life goes on.

On the fun side of life, concert season is starting.  I saw They Might Be Giants three weeks ago.  I saw Peter Hook and the Light two weekends ago.  And, next week, I'll be seeing The Editors, a band I've wanted to see for a long time.

After that, I still have tickets for five other shows through the summer and the fall.  Unlike last summer, when I was recovering from surgery, I'm hoping to feel better at the shows this summer.  I'll be tired, but I won't be recovering from surgery.

And, I'll be saving money on haircuts over the next six or more months.