Fighting Cancer, Part 6 of X: Chemotherapy Wrap-Up

Sorry for not posting since December. In this post:

  1) A brief recap of previous posts, which include Mom's first 4 chemo rounds.
  2) A recommendation: Ken Burns' documentary on cancer.
  3) A summary of the rest of Mom's chemo rounds.
  4) Miscellaneous info.

1) A brief recap of previous posts, which include Mom's first 4 chemo rounds.

 

That's my mom. And her brain tumor.

The tumor isn't benign. It's cancer. Specifically, it's PCNSL: Primary Central-Nervous-System Lymphoma.

Surgeons tried removing the tumor, but it seemed to grow back in a couple of months.

So, Mom was undergoing chemotherapy. Specifically, she was being given high-dose methotrexate (HD-MTX) and Rituxan (RTX).

Also, Mom was fasting for a significant time for each round of chemo. This was a personal choice based on scientific evidence. The hope was that fasting would both reduce the side effects of the chemo and make the chemo more effective at fighting her cancer.

I had given details through Mom's 4th round of chemo. (June 10, 2014: 6 g/m² MTX. No side effects!)

2) A recommendation: Ken Burns' documentary on cancer.

Recently, Ken Burns produced a documentary on cancer, Cancer: The Emperor of All Maladies. It's based on the Pulitzer-Prize winning nonfiction book, The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee. I haven't read the book, but we watched the documentary on PBS and highly recommend it for anyone who wants to understand cancer better, at any level.

3) A summary of the rest of Mom's chemo rounds.

As noted earlier, Mom's 4th round of chemo was on June 10, 2014. She was given 6 g/m² MTX, and there were no side effects. (She was also given RTX each round, which never had any side effects.)

• Round 5: June 24. MTX: 8 g/m². No side effects.
• Round 6: July 8.  MTX: 8 g/m². No side effects.
• Round 7: July 22. MTX: 8 g/m². No side effects.
• Round 8: August 5. MTX: 8 g/m². No side effects.
• Round 9: August 19. MTX: 8 g/m². No side effects.

This was good. Mom was able to tolerate more chemotherapy on a regular basis, without side effects. Many of the nurses commented on how well Mom seemed to be doing. Whether this was due to the fasting, to subtle changes in the way they gave the chemo, or to both, we don't have enough data to know.

But was the chemo (and fasting) doing its job? Was it killing the cancer cells? We now had MRIs from May 20, July 10 and August 21:

If you compare the MRIs, you'll see that Mom's tumor shrunk a little between May and July, corresponding to chemo rounds 3–6. However, Mom's tumor was the same (or bigger…) after chemo round 9. The chemo had stopped working. This wasn't good.

Mom's nine rounds of chemo took just over 5 months. Anecdotally, I'd heard that a lot of chemo stops working after about 6 months. I don't know how often that happens, or even why that might happen. But if it's true, it's unfortunate that there were complications in the early rounds of Mom's chemo. Those delays could have reduced the amount of effective chemo that Mom could have received. Also, receiving chemo more quickly could have reduced the amount that the tumor grew after surgery. (Remember that it seems the tumor grew back in only 2 months.)

On the other hand, what's done is done. Everyone makes mistakes. In fact, that's how we learn—and remember—what's important. Next time, we'll certainly make more mistakes. But our mistakes will be better. 

A PET scan on September 4 would prove that Mom's tumor was still very active. That's a terrifying thought.

Next time, in Fighting Cancer, part 7: Radiation.

4) Miscellaneous info.

Testing urine:

For Mom's chemo, it was important that she be given MTX only when her pH was above a certain level. 

Why? 

MTX is more soluble at higher pH. If Mom was given a lot of MTX while her pH was too low, or if her pH dropped too low while being given MTX, that could cause the MTX to crystallize out and damage her kidneys. (This happened in the first round, which is how we learned about it.) 

The nurses measured the pH of Mom's urine at 6-hour intervals, and those results sometimes took a few hours to come back. Several times, Mom's pH seemed to drop to a dangerous level, but we'd find out only hours later. Somehow, I had the idea that we could test Mom's urine ourselves.

In the photo above, I'm in Mom's hospital room, testing the pH of her urine. (I owe my Ph.D. training for not being afraid to do this. Not that I tested urine for my Ph.D.…)

We used pH paper that we found online and, of all places, from the Sacramento Natural Foods Co-Op. This way, we could have immediate results every few hours, instead of waiting eight hours. If anything seemed amiss, we could then notify the nurses right away.

After we started measuring Mom's urine on our own, I don't think we ever found anything wrong. Nevertheless, I felt a lot better that we were measuring it. Our results ended up being a lot faster and more consistent than what we got from the hospital lab. (And measuring urine may sound gross, but it's actually quick, easy and safe once you know how.)

Chemo wasn't too bad:

I'm not sure how Mom fasted so much; she basically drank only water for four full days, and she did this every two weeks. But beside that, the later chemo rounds were uneventful.

Here, Mom is reading the newspaper in the hospital courtyard. It seemed crazy to me to drag the IV outside, but in the end it was fine.