Cancer Blog #78
By Brian Zimmerman
Begun on July 31, 2021
Email: dyingman1@yahoo.com
My Dying Words
Entry #78– Medical Update
April 13, 2023
I thought I’d spend some more time on a medical update. I have people tell me that hearing the medical information from receiving cancer treatment is helpful. Of course, everyone’s cancer is somewhat different as Siddhartha Mukerjee points out in 3 of his books: “The Emperor of All Maladies: a biography of Cancer”, “The Song of the Cell” (on cell biology, the last chapter being on cancer where I sense that he becomes more pessimistic about not treating cancer but the hope of curing it), and “The Gene” (on genetics obviously. I just started it (33 pages in), but it’s good so far. As I may have – probably did and just can’t remember it – Dr. Mukerjee (an oncologist) points out that our DNA is actually coded for producing cancer, which is probably why we see so much of it. That and we live longer. Apparently after the fall, God changed us as a part of our punishment in sharing in Adam’s sin.
I had my IV treatment yesterday (Wednesday, April 12). It is my sixth treatment with these drugs: Irinotecan, 5-fluorouracil (better known as 5-FU), and Ramucirumab (the monoclonal antibody drug that is designed to target the cancer cells at the primary tumor site in my distal esophagus (so small a spot that gastroenterologist had difficulty locating and believing it to be cancerous, and yet it was the reason for my lung issues. How’s that for the power of cancer metastases?), which led to metastases in my lungs, which filled up in a matter of months (stage IV (there is no V), with the additional prognosis of treatable, not curable. I just found out in the last several weeks that the “treatable, not curable” can mean a remission for life. Our church supports a missionary family, and the husband developed Mantle Cell Lymphoma (some kind of cancer of lymph nodes, I think) and his cancer is also designated treatable, not curable, but he’s been told that if he follows the treatment plan at UVa medical center for two years that he should be in remission for a very long time (like permanently).
There are several lessons here: first, when you get a terminal diagnosis, give yourself a little while to recover from the surprise, remembering that you are still in the earliest possible stages, of diagnosis, and possibly prognosis. I didn’t ask how long I had to live as I felt that it would likely be roughly a good guess, but still just a guess. The chart I was shown at the end of the first year showed that most people with my cancer were dead before one year. Here I am at two years. You need to research your type of cancer and begin learning the terms and stages and subtypes of cancer and what exactly you have. Then investigate treatment protocols, i.e., how is your type of cancer treated at the best hospitals. I used the National Cancer Institute for suggestions of protocols and treatment centers. Then I checked John Hopkins protocols for my cancer (which are usually posted online, believe it or not), maybe Mayo Clinic. Now ask your oncologist about their protocol. I suspect it will be close to matching the above (mine did), but it never hurts to try to understand what is planned for you. This problem is life and death, so check. The oncologists meet regularly (I think it called something a tumor board) so they work at keeping up on the latest research and protocols.
The second lesson is that your treatment protocol may change. I say may because it depends on how your body responds to the treatment. I had a lot of difficulty handling the monoclonal antibody drug Opdivo and was finally taken off that drug. He had to start me on other drugs so it was like starting over: new drugs, new side effects. I am now on my third protocol. One of the drugs, the 5-FU has to be administered by pump over a two-day period at home. You need to be ready to discuss these protocols and their side effects knowledgeably with your oncologist. I made a note in my cell phone of questions and concerns that I raise every time I go. Don’t make a million questions – they don’t have time – but if you’ve legitimate questions and problems, bring them up. They will be grateful for your input, if you’ve got a good oncologist.
That brings us to the third lesson. You are not an oncologist or any kind of MD (join the non MD club), and maybe not any kind of medical personnel such as a RN or therapist. But, again, this is a life and death situation for you. My advice is treat it, especially at the beginning (like the first few months) like a job. Get up in the morning and begin working through material you don’t understand yet on your diagnosis and treatments. Investigate protocols. Learn about various ways to handle the many side effects and write down what works best for you. Wouldn’t you spend significant time on researching big ticket items you were going to purchase? Well, this is the biggest ticket item you’ll ever have to deal with. So, learn all you can about the chemo and radiation you are receiving. What are the effects? What are the side effects? Common side effects are nausea, constipation (which sounds funny till it’s you that has it), diarrhea, mouth sores, skin tears, edema in your feet and ankles. Maybe you feel that these issues should all be addressed by your oncologist and staff. I’m here to tell you that the quality of your input will greatly improve the quality of your treatment. For instance, yesterday in my pretreatment appointment I asked (you don’t need to pretend to be some expert and then be obnoxious in your ignorance. Believe me, those patients and family are the worst. You need to contribute your knowledge of your needs and reactions, as the oncologist can’t know what you’re feeling and doesn’t have time to go through all the possibilities during a brief appointment) that the high dose Benadryl that I had been receiving before the chemo treatment be stopped. It was causing me significant problems such as restless leg during the treatment session (which I found I could reduce or eliminate by walking in the treatment room with my IV pole), confusion, and unsteadiness. But, I was afraid that the Benadryl was helping some to prevent nausea, which I really hate. I was already receiving several pretreatment antinausea drugs, but I asked that instead of Benadryl if I could receive Pepcid, which not only is an antacid, but also has some antinausea properties. They okayed both requests. So, I contributed to the treatment because of my knowledge of my needs and a small knowledge of the drugs I was receiving. I didn’t have to play MD or pharmacist to do that, but based on my research. And, the oncology staff was open to that kind of input.
When I got home my bowels were not happy, but not too bad. On Thursday (the next day), I was off to a rocky start with nausea, then three bouts of diarrhea (did you know that like edema (swelling), they grade diarrhea? Grade 1: up to 4 bouts, grade 2: 4-6 bouts, grade 3: 7 or more. At grade 3, you’re starting to be in danger of hospitalization unless you can get control of the problem. Grade 4: life threatening. Diarrhea is serious stuff if it becomes severe enough. It can produce dehydration, mess up your electrolytes (like Na, K, etc.). When I was hospitalized with my hypo adrenal attack (with diarrhea being one of the symptoms), I had 10 bouts of diarrhea in 24 hours. But, the MD’s were focused on the hypo adrenal problem and so gave me high doses of hydrocortisone (cortisol is a hormone steroid produced by the adrenal gland). The hydrocortisone fixed all my symptoms except one, the diarrhea. The MDs never said a thing about my level 3 diarrhea, which is serious if it continues. The next thing you know I would be on an IV for dehydration and to replace the electrolytes being lost through the diarrhea. Finally I asked my unit nurse to please ask the hospitalist MD over my case to please prescribe me some Imodium (an over the counter antidiarrheal medication). She called and he agreed to give the prescription. That fixed the diarrhea. Once again, me intervening because I could see that MDs treating me were missing something minor in the scheme of things that could develop into something more major in my scheme of things. That happened probably because my treatment was likely being handled by an immunologist (who came by to see me later. I’m afraid I didn’t care for him and wouldn’t have gone to see him outside the hospital as he refused to answer my questions about the hypo adrenal attack and kept telling me that they just wanted to get me healthy to go home. Oh brother, he was treating me as if I were a kindergartner, not an adult who wanted some information). MDs tend to have tunnel vision. They do not look much at medical areas other than the one they specialize in. An immunologist is not much interested in or concerned about diarrhea. That’s somebody else’s concern. And, that’s fine, but you need to be aware that you have a problem that isn’t being addressed, so you need to find the MD who can address it. As I’ve said before, the hospitalist is the general contractor who coordinates your medical care in the hospital. Go to them first with those issues. Once you’re discharged, your PCP (primary care physician) is the general contractor. Calling the hospitalist at that point is a complete waste of time. In my case I had developed my own diarrhea protocol that I used at home and if I couldn’t get the diarrhea under control with the BRAT diet and some dietary changes, like no fruit, the Imodium was necessary, so that was what I requested. I also have my own protocol the opposite problem of constipation.
And I gained 3 pounds from my treatment session on Wednesday. So, I have my little edema (swelling was the most likely reason I gained weight, obviously) protocol, which included compression socks (women call them compression stockings, but males like the name compression socks) and diuretics like tea and beer. Nice treatments! Once again, do you know anything about compression socks? I didn’t, so I did some reading. So, here’s what little I’ve discovered in my research on them. First, you measure for them, and you do that usually by measuring the circumference of your calf and your shoe size. Second, they are graded by the amount of pressure they apply to your lower leg and that pressure is measured in mmHg (Hg is the chemical symbol for mercury). The higher the mmHg, the more the pressure. The lower pressure socks are 10-15 mmHg (very light), 15-20 mmHg (light), 20-30 mmHg (moderate), 30-40 mmHg (strong). I started with 20-30 mmHg, but they were too much pressure and very difficult to don (put on) and doff (take off). So, now I’m on 15-20 mmHg, still plenty of pressure but easier (not easy) to don and doff. I feel I could even drop all the way down to the lowest level (10-15 mmHg). Anything over 30 mmHg and you probably need to consult an MD, who may refer you to therapists who specialize in treating edema/lymphedema. The compression socks push the fluid out of your feet and ankles and back into your blood stream, which increases the blood volume and so increases the load on your heart and kidneys. If you have heart or kidney issues, then ask your MD (or your home health nurse) first before applying compression with socks and find out is it safe and how much pressure you may need.
Hope this little medical update helps you prepare for the day you may receive that terminal cancer diagnosis. The Lord bless and keep you.
Next: The Hope of Handel