Cancer Blog
By Brian Zimmerman
Begun on July 31, 2021
Email: dyingman1@yahoo.com
My Dying Words
Entry #6:
August 7, 2021
Treatments Have Side Effects
I have people ask about my treatments so I thought I’d spend some time discussing those with this caveat: there are many forms of cancer and obviously the treatments are suited to the need. Common ones are chemotherapy, radiation therapy, and surgery. But, there are others as well so I am reporting only what was chosen for my treatment. A neighbor of mine about my age during the time I was diagnosed with my cancer was diagnosed with some kind of neck or throat cancer. He’s cigarette smoker so I suspect it was likely related to that, but he’s had a much harder time with his treatments than I have. He now has a tracheotomy, a PEG (a tube that goes into his stomach through which he receives liquid food), and chemotherapy and radiation therapy, one of which has made his tongue swell to the point where it protrudes from his mouth. A terrible thing I’m sure. And, as a home health physical therapist I saw quite a number of cancer patients receiving various treatments, but most did not tolerate PT very well.
My Treatment Regimen
Having said all that, let me talk about my treatments and how they have affected me. My biggest problem is the metastatic cancer in my lungs. There’s no discrete, defined tumor there that they could remove with surgery. You’d have to take out both my lungs to get rid of the cancer. The cancer in my esophagus (the source of the primary tumor) is apparently very minor. And, since both cancer growths (esophagus and lungs) are essentially the same, they’re treated in the same way. My treatment is solely chemotherapy, no surgery, no radiation, nothing else. I’m on a regimen they call Capox, which refers to the two chemo drugs I receive: Capecitabine, which is the oral drug I take twice daily, and Oxaliplatin, which is the medication I receive by IV once every 3 weeks. I qualified also for a clinical trial of an IV treatment that is a form of immunotherapy. The treatment “drug” (for lack of a better term) is Opdivo. When I say qualified what I mean is that there are several tumor markers that are checked for in the cancer as the Opdivo is designed to specifically direct your immune system to attack tissue with those markers. I had one of the two markers so that was good enough. I receive the Opdivo on the same day as I receive the IV dose of Oxaliplatin. So, once every 3 weeks I go to the oncologist’s office where there’s a large room full of recliners with IV poles where I receive 3 treatments: the IV drugs (chemo and immunotherapy), and a take home bag with the oral chemo pills in it, which I take while I’m sitting and receiving the IV drugs and carry the rest home to finish over the next two weeks. It takes about 4 hours for the two IV meds and I also receive a cocktail of drugs before the chemo drugs are administered: a steroid (to prevent allergic reactions) and an antinausea medication for obvious reasons.
Some of the Side Effects
So, I usually tolerate the treatments okay, though the first day is kind of rocky. Nausea is a never ending problem for most chemo treatments. The Capox regimen uses drugs that sound old school to me: sort using a sledge hammer to kill the cancer cells. The drugs kill any fast growing cells, and cancer is made up of fast growing cells. But, there are plenty of other fast growing cells in your body, cells that need to be replaced constantly, e.g., your gastrointestinal cells lining your gut (hence the nausea), hair cells (I’m almost bald so not a problem for me), and so on. The other problems with these two chemo drugs are a cold sensitivity: in your hands so they warn you not to remove things from the refrigerator at first. The cold sensitivity usually lasts several days and is never very severe for me. The other place you develop cold sensitivity is in your mouth and throat. So, it’s usually a number of days before I can eat anything really cold like ice cream. But, the one that is the most disturbing for cold sensitivity are the laryngospasms (an involuntary contraction of the vocal cords making it difficult to breathe). The laryngospasms result from the IV chemo med (Oxaliplatin). I’ve experienced it a number of times, always on the day I receive the IV med. The first time was pretty scary as it wouldn’t quit recurring every minute or so. I finally found if I shut my mouth (always a good idea for me – ha!) and breathed through my nose to warm the air entering my throat, the spasms would stop. Unfortunately, that trick worked only the first time I experienced the laryngospasms. The next time (3 weeks later when I received my next IV treatment cocktail) it didn’t help, but what fixed it that time was my wife making me a quick cup of hot tea in the microwave that I sipped on and waited for the spasms to fade away. The next time it happened, it could be relieved only by drinking hot tea. It usually dissipates after about 20-30 minutes and ratchets down as time passes during that period.
A Bigger Problem with Another Side Effect
The big problem with these chemo drugs (the Capox regimen) is that one set of fast growing cells that they attack are the cells in your bone marrow, the cells that produce red cells, white cells, and platelets. As the drugs beat down these cells, eventually the bone marrow produces less of them, so as the red cells diminish you become anemic (making you tired and short of breath), as the white cells diminish you become dangerously susceptible to infections, and as the platelets diminish you can have bleeding issues as platelets help form clots. The bone marrow can withstand this hammering only so much so at some point if the Capox regimen is not halted, those drugs will kill you. My oncologist told me that most people can’t tolerate more than about 7 or 8 cycles of Capox treatment. Around cycle 7 usually neuropathy shows in the hands or feet. Neuropathy is a sign of peripheral (meaning outside of the central nervous system, viz, the spinal cord or brain, so peripheral would anywhere else in the body like arms, legs, trunk, etc.) nerve damage. It shows up as burning, tingling, pins and needles, numbness. It’s a very bad sign that the nerves are starting to reach a point where they’ll be damaged so much that they won’t recover. At that point, that they stop the chemo. I’m on my third week (my week off from treatment) of my 4th cycle and go Monday to start cycle 5. When I go in, they draw blood to check my hemoglobin (the red substance in your red cells that carries the oxygen you need), my white cells, and my platelets. My hemoglobin had dropped about 2 gm/dl to about 12 gm/d when I was tested at my IV session for cycle 4. Normal men’s hemoglobin is around 13 to 17 gm/dl. That probably indicates my bone marrow is starting to give out, but how fast that will occur is hard to say. I don’t know exactly how low they’ll let my hemoglobin go before they stop. They don’t just give you blood whenever you hemoglobin gets below the normal range as transfusion of someone else’s blood has risks of its own. As a rule of thumb, I think a unit of packed red blood cells (prbc) usually bumps your hemoglobin up about 2 gm/dl. In the hospital I noticed that a hemoglobin of somewhere around 6 gm/dl was sort of the trigger that occasioned a transfusion, but that probably depends on lots of factors. So far my white cells and platelets haven’t shown any decline.
Immunotherapy Side Effects Were the Worst
I had a host of other side effects, but the worst by far came from the immunotherapy drug. I didn’t receive it during my first IV session and so I actually didn’t feel too bad; even the nausea was fairly mild. The next cycle though (as I said I get all 3 treatments on the same day, then continue the oral (pills) treatment twice a day for 2 weeks, and then have a week off from any treatments), I received the two Capox drugs and the immunotherapy drug. My thought was that it would be easier on me than the old school (if that’s what they are) drugs. Boy, was I ever wrong. The side effects of the immunotherapy were way worse (I have to mention that during one session I sat in my recliner next to someone who turned out to be a home health PT patient of mine. She was also on Opdivo, but suffered zero side effects from it so nothing like mine. Your mileage may vary as they used to say when I was a kid). I thought the immune drug would stimulate my immune system to kill the cancer cells, which I assume it did. The problem was that the drug also revved up my immune system to attack me, even my good cells, even those I needed. It produced a sort of autoimmune (i.e., it attacked my own body, not some “foreign” cells (like bacteria or viruses) response that was really hard on me. And, unlike the other chemo drugs, the effect of the immuno drug didn’t fade away the farther I got from the day it was administered. It seemed to get worse. Severe nausea, diarrhea, and gas, all of which make you simply miserable. I know you would think the antinausea meds would fix that, but they didn’t. Ginger is a favorite treatment but ginger ale and ginger beer help with queasiness and mild nausea but not with severe nausea. A friend brought me crystallized ginger and that actually helped some. By far the “drug” that helped the most was the California product. Of course I’m referring to cannabis (marijuana). Why on earth lawmakers can’t distinguish between the recreational use and medicinal use as they do with morphine, oxycodone, and fentanyl is beyond me. I used a cannabis tincture (it’s basically an oil that cannabis has been dissolved in and is used sublingually, i.e., you put a drop under your tongue). It did help, though of course it didn’t eliminate the GI symptoms. And then a bunch of other problems: light headed/dizzy, spacey/fuzzy minded, muscle cramps in my legs, swelling (called edema) in both my legs around my knees and ankles as my joints were attacked so that I was forced to wear compression stockings and keep my legs elevated, skin drying out on my hands and feet to the point that I had to put lotion on them regularly (and I wore socks most of the time to keep the lotion on my feet), my eyes feeling as if I had had the drops you get in the ophthalmologist’s office before an eye exam so I couldn’t take bright lights, a fan blowing on me (as my eyes were dry), and I couldn’t focus well enough to read. And finally my favorite side effect and one that my oncologist said he had never seen before, loss of my fingerprints. I first noticed that when I tried to use touch ID on my iPhone and it kept rejecting my right forefinger print. It accepted my left forefinger fingerprint for several more days and then rejected it as well. I tried re-reading both forefingers, but the fingerprints were so faint I guess that the phone simply couldn’t read them. Several of the apps on my phone were not happy with that development.
This is a long entry so I’ll stop here and continue with treating these symptoms in the next entry.