Vomiting through chemo

Treating Nausea and Vomiting

Photo by Annie Spratt on Unsplash

Betsy’s third chemo infusion was rather uneventful. We spent the day at the chemo clinic, and everything went like clockwork. After the scare during her second infusion, that was welcome.

What was also welcome was that we got good news. Colon cancer is a solid tumor cancer, which means the key thing you look at to determine how the cancer is doing is by performing a scan, generally a CT, and looking at the size of the tumor as well has its appearance. However, many cancer patients have something in their blood that indicates cancer called a tumor marker.

I am being intentionally vague on what a tumor marker is because there are lots of tumor markers, and they are not all the same thing. In the case of colon cancer, the most commonly used tumor marker is carcinoembryonic antigen (CEA). This is a protein that indicates inflammation that is usually very sensitive to colon cancer.

All that means that if you have colon cancer, your doctor is likely to look for an elevated CEA in your blood. If it is elevated, then it is something the doctor is likely to track. With CEA, the overall number matters, particularly if it is elevated, but the most important thing frequently is the trend. If CEA is trending up, that is a sign the cancer is getting worse. If CEA is trending down, that means the cancer is getting better.

For a healthy person, a normal CEA reading is 5 or less or maybe 3 or less depending on the lab. Betsy was just under 14,000 at diagnosis. Having been in the colon cancer world for over a decade, I have seen a lot of people’s CEA scores, as in hundreds if not thousands of people’s CEA levels. Betsy’s is not the highest I have ever seen, but it is in the top 5. So, her CEA was exceptionally high.

The news we got was that in two treatments, Betsy’s CEA had dropped from roughly 14,000 to about 4,000. That number was still extremely high, but it meant things were going in the right direction.

When you are doing chemo, you need endure a lot of suffering, and you need that suffering to be worth something. In fact, you need it to be worth a lot. Chemo frequently ruins your life at the time and maybe for long afterward. If you are going to have such terrible consequences, it better do a real number on your cancer to justify it. Betsy’s CEA reading indicated it probably was beating up the cancer.

She needed that boost to her morale. Even though she was only on her third chemo infusion, she was really quite sick. Besides her hair falling out, https://open.substack.com/pub/concerningcancer/p/christmas-with-cancer?r=xwnqz&utm_campaign=post&utm_medium=web, Betsy had really been struggling with nausea. From the beginning, she had been given loads of drugs for nausea: Dexamethasone, Aloxi, Zofran, and Compazine.

Despite all of those drugs, Betsy still struggled mightily. She vomited multiple times per day. Multiple days a week, I would bring her in for emergency IV fluids to keep her from getting too dehydrated because of the vomiting. Obviously, more needed to be done.

Pretty quickly, her doctor added another drug, Ativan. Ativan is not normally a nausea drug. It is an anxiety drug. However, it also works on chemo-induced nausea, and it very much helped Betsy’s nausea.

It extracted a tremendous cost, though. Mental health drugs are SCARY. Do not let anyone tell you otherwise. Here are some of the side effects of Ativan:

1. It can stop your breathing, particularly if mixed with opiates or alcohol, and can be fatal,
2. It is addictive
3. It causes severe drowsiness
4. It causes depression and suicidal tendencies
5. It causes confusion
6. It causes restlessness
7. It causes jaundice and can hurt your liver

https://www.drugs.com/ativan.html

All of these side effects are really serious. The mental health crises these drugs cause are common and absolutely terrible. What is more, Ativan tends to react with quite a few common drugs. None of this was disclosed to us when the doctor prescribed it.

If you have been reading the section called “Betsy in her own words,” you might get the impression that Betsy was a Debbie Downer. Nothing could be further from the truth. Yes, the cancer diagnosis was extremely upsetting, but Betsy was someone who worked every day to be positive and joyful. This Betsy I was seeing since her diagnosis was not the Betsy I knew.

At first, we thought her change in mood was because of her cancer diagnosis. I have a hard time believing there is anybody who would be happy to get a cancer diagnosis; so that is not necessarily a bad assumption. Yet, after a few weeks, Betsy and I noticed her breaking down weeping for no reason at all, and she was doing that regularly.

After several weeks of this, we brought it up with her oncologist. That’s when he told us it was probably the Ativan causing her the distress. So, we stopped the Ativan.

While the Ativan ruined Betsy’s mental health, it very much helped with her nausea. Now, without the Ativan, her nausea and vomiting got worse again.

Having never been seriously or chronically ill, I was unprepared for the strain this kind of nausea put on Betsy, particularly when coupled with the fatigue she felt. It is exhausting to throw up over and over again, maybe a half dozen to a dozen times a day. I have been sick like that before, but only for a day a two. Being sick like that for weeks is a wholly different matter, and I cannot tell you how bad it is because I do not know. I could see it was badly hurting Betsy, though.

However, the sickness is not a constant. Instead, it ebbed and flowed. When Betsy would start her infusion, she was feeling the best she had in two weeks. By the time she walked out of the infusion room, she was feeling significantly worse than when she had walked in.

Over the next few days, she would get sicker and sicker. Not coincidentally, her immune system got worse and worse. The nadir would come a few days after her infusion. Her infusion was on a Tuesday, but she also went home attached to a pump that would send one chemo agent into her for the next 46 hours after leaving the infusion room.

Typically she would feel absolutely dreadful on Wednesday, Thursday, Friday, and Saturday. That was when the vomiting, fatigue, cold sensitivity, and everything else was the worst. She would easily vomit a half dozen times if not a dozen. Because she was so fatigued and because it was so much, vomit did not always end up in the toilet or the bowl. So, I had to spend a lot of time with the bleach cleaning up.

One thing we did to address it was start getting her IV fluids. We had to go back to the chemo clinic on Thursdays to take her pump off. When we did that, we also had them give her some IV fluids; those helped enormously.

We had to go back again on Friday for Neulasta, which I spoke about here https://open.substack.com/pub/concerningcancer/p/ouch-my-bones?r=xwnqz&utm_campaign=post&utm_medium=web. So, hey, we might as well get some more IV fluids. Again, that perked Betsy up.

Understand that Betsy was drinking lots of water. We had figured out that 15 cups a day was the best for her, which is just under a gallon a day she was drinking. However, IV fluids skip your digestive system and get right into your blood. So, they help in a way that drinking water does not.

By Sunday, five days after her primary chemo infusion, things usually started to turn around, and Betsy started feeling better. Better is not the same as good, though, and it does not mean she stopped vomiting. In fact, Betsy still felt pretty lousy even at her best.

So, we also started doing IV fluids on Betsy’s off weeks. Her chemo schedule was that Betsy got chemo every other week, which mean she had a week of no chemo between her infusions. On her off week, we decided to go in every Monday, Wednesday, and Friday to get her IV fluids because they were so helpful.

Honestly, IV fluids were kind of miraculous. Even on the Friday of her off week, when Betsy was very nearly feeling her best, she was still only about 20-30% of what she had been before chemo. She would get IV fluids for about an hour, and suddenly she would be up to 40 or 50% of herself before chemo. Obviously, this was not ideal, but it was a drastic improvement. Her vomiting got better, but, more, you could see that she was just feeling better in general.

Better does not mean great, though. Betsy kept vomiting, and she was losing weight. That is a huge concern.

To be sure, I am a huge proponent of fasting or doing the Fasting Mimicking Diet, https://open.substack.com/pub/concerningcancer/p/betsy-gets-hit-by-a-train?r=xwnqz&utm_campaign=post&utm_medium=web. I realize fasting may, in fact probably will, cause some weight loss. I think that is a fair trade off. I believe there is also a huge difference between losing some excess water and fat from a strategic and controlled fast and wasting away from uncontrolled vomiting. Betsy was doing the latter, and that was obviously bad.

So, I proposed fasting to Betsy. Betsy was a seriously nonviolent person. You really had to work to make her angry. There were not many good parts to chemo, but her lack of energy meant she did not turn my face into a pinata. Instead, Betsy had to resort to doing her best impression of Medusa when I suggested fasting.

So, we tried all kinds of things of other things to help. We did Sea Bands; ginger in every form we could think of: fresh ginger, ginger smells, ginger candy, ginger ale, ginger food; peppermint anything, Scopolamine, Emend, Kytril. Some of them were very useful others were of limited if any use. It took us weeks of experimenting to finally able to get her to stop vomiting multiple times a day, but she remained badly, sometimes horribly, nauseated as long as she was on FOLFOXIRI, her first chemo regimen.

One thing that stayed constant, though, was that Betsy had friends who would call or visit. Hearing from them or seeing them was a huge highlight for her.

She also had her dad. Betsy’s mom had died an untimely death before she and I had gotten married, but Betsy’s dad was still there for her. She called him many nights when she was struggling, and talking to him was a balm for her soul.

One thing we were learning was that being sick is very isolating. So, having people who cared enough to call or, even better, visit was a huge blessing that I certainly had not appreciated before. Now I know.

MEDICAL NOTE – NAUSEA

Nausea is one of the most common side effects of chemo. Just about every patient gets it. It is hard to understand if you are not the patient just how bad it can be. It has also lots of downstream effects.

For example, nausea can lead to vomiting. Vomiting can lead to very serious problems:

(1) It quickly dehydrates you. Cancer patients are already at risk for dehydration for a lot of reasons. So, exacerbating that with vomiting is a really bad thing.

(2) It can damage your throat and teeth. When you vomit, acid goes up your throat and mouth from your digestive tract. What is more, chemo itself is toxic to your skin and can cause damage on the way out.

(3) It means you are losing your food and thus not feeding your body needed nutrients. When you are already struggling to eat, losing what little you eat makes you waste away.

(4) Vomiting is exhausting. If you have ever thrown up several times in the course of a day or two, you know that. Now imagine doing that for many days, weeks, or even months.

(5) Vomiting reduces your desire to eat above and beyond what chemo has already done. Again, I am a huge proponent of fasting, but that is a very strategic thing for me. When not fasting, you need to eat; maintaining your strength is a big deal. If you have been throwing up and have that taste in your mouth, the aversion to the reaction, etc. it is very hard to eat.

In general, just being nauseated all the time wears at you and saps your will to live or to keep doing treatment. If you can NEVER enjoy a meal or a walk or almost anything because your stomach is upset, it can be quite the challenge to everything in life. So, it is important to treat nausea aggressively.

Unfortunately, our oncologist and plenty of others take the position that the patient SHOULD be nauseated. He and his nurses told us they wanted Betsy to be nauseated just below the level of vomiting. I think that is hogwash. I wish I had done better for her nausea. Here are the things I would do if I were to do things over again.

A. Fast or do the Fasting Mimicking Diet (FMD)

I have written about fasting and the FMD before, and I maintain this is the first thing just about any patient should do. Fasting both reduces side effects and helps fight cancer. When you fast, you need to avoid Dexamethasone because that ruins your fast. In general, I highly recommend you read my post on fasting and the FMD. https://open.substack.com/pub/concerningcancer/p/betsy-gets-hit-by-a-train?r=xwnqz&utm_campaign=post&utm_medium=web. This is the number one thing I would do, and I should have taken Betsy’s anger at me instead of backing down on this issue.

B. Get a palliative doctor

Near the end of her life, Betsy got a palliative doctor, and she suddenly started feeling better. A lot of people think palliative care and hospice are the same; they are not. Hospice usually makes the patient discontinue treatment. Palliative care’s job is to help the patient feel better while on treatment. That is a huge thing.

The palliative doctors have some tricks that most oncologists do not, and I greatly regret not getting one before, although, in my defense, I did not know it was an option. I really wish her doctors had told us about palliative care from the beginning. It could have made a huge difference in both Betsy’s quality and quantity of life.

Yes, palliative care is associated with stage 4 patients living longer. I am jumping ahead of the story, but one of the big problems Betsy ultimately ran into was that the treatments really beat her up. She needed to treat less than was optimal because the treatments were too toxic. Having treatments that made her feel better would have meant she could do more treatment.

I have also written about palliative care before and suggest you read that. https://open.substack.com/pub/concerningcancer/p/what-does-that-guy-do?r=xwnqz&utm_campaign=post&utm_medium=web

C. Prescription drugs

Realistically, there are a lot of prescription drugs you can ask for. Yes, I say, “Ask,” because your doctor may not think of them. You can always ask about a drug; you might be surprised how effective just asking can be so long as you know what to ask for.

I want to be clear that, just because something is on this list does NOT mean I am saying you should necessarily ask for it. All I am saying is that it might help with nausea. In fact, there are some drugs on this list that I really do not like and would personally never ask for.

For example, Dexamethasone is on this list. Dexamethasone is incompatible with fasting or the FMD, likely helps your cancer spread, and enhances the long term damage of chemo. Looking back, I really wish I had been able to get rid of the Dexamethasone. So, I personally would not ask for it, but that does not mean you may not want to. That is a decision you need to make for yourself.

Additionally, not all of these drugs are compatible with each other. Some are the same class of drug; you generally do not want to take multiple drugs of the same class. Other drugs might interfere with each other or cause unpleasant side effects.

This list is not exhaustive. There are more drugs out there that work on chemo induced nausea that I have not included. This is merely a list of some common drugs that is meant to give you something to discuss with your doctors:

Compazine

Zofran

Kytril

Emend

Phenergan

Aloxi

Ativan

Remeron

Olanzapine

Dexamethasone

Atropine

Sancuso

clonazepam

Reglan

Scopolamine
IV fluids

Yes, I realize IV fluids are not a drug. If you want them, though, the easiest way to get them is to ask your oncologist for them.

D. Holistic therapies

You have more options than just drugs or fasting. There are some supplements or other holistic things that can work. Again, I am not necessarily saying you should use these. I am saying they are things for you to look into to do your own research or for you to discuss with an integrative practitioner.

Sea-Bands
Ginger
Lavender
Peppermint
Queasy Pops

Hydration

A couple of notes on these.

A. Betsy used Sea-Bands, and they were very helpful for her. Yes, she was wearing wristbands most commonly worn by pregnant women, but they seem to work for only about half of the cancer patients. I do not know why it only works for half, but I suspect that some people may not apply them correctly.

Sea-Bands use acupressure to relieve nausea. I listed a brand name, but there is no reason why you need to use the brand name product. The benefit is actually from the acupressure, and there may well be other ways to do acupressure or acupuncture that work better for you.

B. Ginger was helpful for Betsy, so long as she got enough, but it really only worked for a short time. The best ginger for her nausea was candied ginger, which gave her about 45 minutes of relief. Many of the ginger things, though, really did not contain much ginger; so they gave little relief.

A word of caution about ginger is that much of the packaged stuff is mixed with sugar. At the time, we were foolishly dismissive of the association between sugar and cancer, but notice I said we were foolish. I will discuss sugar more in a future post. For the time being, I am suggesting caution with ginger packaged with sugar.

C. Lavender and peppermint have some suggestion they help. Betsy did not feel like she got much relief from either of those. That does not mean you will not find them more helpful.

D. Queasy pops are not something Betsy tried, but other patients have. Most of them have sugar; so, again, caution is warranted.

E. Lastly, simply staying hydrated helps. Realistically, it helps in multiple ways. So, it is important to push water when on chemo.

Something I have not discussed for a lot of these holistic treatments is how you take them. Some people find taking ginger, lavender, peppermint, etc. orally is better, but some prefer them as aromatherapy. Betsy was not a big fan of aromatherapy, but some people very much are. So, aromatherapy is something you can try, especially if you cannot stop vomiting enough to eat or drink something.

Lastly, the National Cancer Institute has a very lengthy web page discussing nausea and vomiting since it is such a major problem. It focuses much more on drugs than other treatments but is worth reading if nausea is a major problem for you. It has a great deal of information I have not discussed. Here is a link to it. https://www.cancer.gov/about-cancer/treatment/side-effects/nausea/nausea-hp-pdq

BETSY IN HER OWN WORDS

“Laughing at tomorrow.”

Proverbs 31:25 “she is clothed with strength and dignity; she can laugh at the days to come.” Part of the description of a wife of noble character.

I did a bible study on Proverbs not quite two years ago. The girls I did it with thought a lot on what it would be to be able to laugh at the days to come. To not worry but trust. Trust that what was ahead was part of God’s plan. Not to fret or fear but to laugh.

I am working on that right now. This has been a chemo week, and they’re tough. I have to go through that 9 more times. I have a repeat CT scan scheduled for January 29. To be honest, I’m scared. Scared of being sick, scared of getting weaker, scared of getting sick from contrast for the CT, and scared of more bad news. I am feeling of little faith. God is great, all-powerful, and good. I’m struggling to see the good God has for me.

But I see now, once again that I have been focusing on what I lack. I have wonderful friends who come visit. I have a husband who barely leave my side. We have a warm place to sleep and plenty to eat (not that I want to eat much these days). We have health insurance. And if spite of my feelings, a God who loves me (more than my husband does, as my husband reminds me).

Then I am reminded of this: Romans 8:28 “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

And now you see the ups and downs of my mind.

Notes are always appreciated. Prayers too.

Love, Betsy