Chemo Tips
Depending on your type of cancer and proposed treatment it may be likely that you will receive chemotherapy. Innovations in medicine are changing rapidly, the explosion of immunotherapies and targeted drugs for specific types of cancers and gene mutations are exciting changes, creating more successful outcomes.
Even with all the new treatment therapies, there are a few that have been around for decades and continue to be used today. Drugs like Carboplatin and Paclitaxel have been used since before the 1980’s and still seem to be the most common components of frontline treatment for ovarian cancer, as well as other types.
These drugs may have been around a long time, but it seems much more can be done to figure out how to deal with their side effects – which can be considerable. Yes, there is the signature cancer hair loss, but much more debilitating is the decimation of your blood counts and potential nerve damage.
One thing I learned from my amazing oncology nurses is to address potential issues before they become problems. Once you get nausea or neuropathy or mouth sores its incredibly difficult to reverse things. You must be proactive and take preventative measures. You are dealing with enough already, you’re likely exhausted, but try take the time for these things and life will be a little more tolerable.
Let me preface this information by stating that this is MY experience. I was given IV Carboplatin, Taxol or Taxotere and Avastin. Everyone does not respond the same way to the same drugs and cancer treatments. These are tips that worked for me and I offer them as possible solutions that may work for others. This is NOT medical advice, I am NOT a doctor. These are not guaranteed to work, but my medical team was impressed with the minimal side effects I experienced throughout my treatment and my overall successful response to the frontline treatment plan.
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Chemo Day Preparation
My first day of chemo infusion was overwhelming and scary. So many unknowns and fears of how you will react to the treatment. For me, it was the first time I cried at the hospital. After the rush to diagnosis, talking with different doctors and massive amounts of research, this was officially the beginning of it all. Suddenly all the weeks of conversation about my cancer got very real. I had a port implanted the week prior, so the infusions themselves really did not hurt at all, it was more emotional trauma than physical. Aside from feeling a bit drowsy from the Benadryl, I didn’t feel much different after the first treatment. The nurses in oncology are amazing, they are patient and kind, even though they are attending to several patients at once. Things got much easier and less stressful, friends would come visit with me to help pass the time.
Here is what I brought with me to each treatment. So many bags you would have thought we were going camping for the weekend!
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Big bag to hold all the goodies (compliments of my friend Jen!).
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Cozy blanket (they will give you heated ones, but I wanted my own too).
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Scarf and warm socks.
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Cotton knit cap to keep my head warm.
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Tissues, lip balm and lotion.
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Mini cooler for ice packs and food (I could be there for up to 8 hours and brought lots of healthy food options). I really like this cooler, holds everything without being too bulky or heavy.
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2 big bottles of water
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Phone, charger and reading material or computer.
Daily Checklist
There are many suggestions on this site for things to ingest or do and supplements to take. It can be overwhelming and hard to remember what you did 15 minutes ago when your exhausted and have chemo brain (yes, that is a real and legit thing!). There would be times when I had to write down the most basic tasks to be done because just brushing my teeth and preparing lunch seemed too overwhelming. I created a checklist on my phone that I could use daily to track everything. I like the Evernote platform because it syncs across all devices, but anything that’s easy for you will work.
Neuropathy
Some chemotherapy drugs (usually taxane-based) can cause damage to nerves, particularly in hands and feet, and can range from minor discomfort to agonizing pain - this is referred to as chemo induced peripheral neuropathy. I had read enough about this to know it was something to try and avoid at all costs. It’s odd, I could sense that my hands were losing touch, spatial-proximity and was constantly knocking things over or dropping items. I had mild sensitivity on the tips of my fingers (was challenging to button a shirt) and my hands were sensitive to hot water, but nothing worse than that. All went away soon after chemo stopped, no permanent issues.
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I took a few courses of action for this; I would ice my hands and feet while getting Carboplatin and Taxol (I did it for both just to be sure). I purchased these NatraCure cold therapy socks and a second set of replacement gel packs to last the duration of the infusion. For my hands I would just hold iced gel packs, taking brief "defrosting" breaks.
L-Glutamine supplement has been well known to also help with this. I bought it in power form and took 10 grams, 3 times per day, dissolved in water (you can add other liquids for flavor if needed); the day of chemo and 4 days after. It doesn't really have a flavor, a bit chalky, but goes down easy.
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I also took a variety of vitamin supplements, including a high-dose B-Complex, which there is also some documentation that this helps too. It’s also a good energy booster, see Food is Medicine page for more information.
Hair Loss
About two weeks after my first chemo infusion my head started to ache, which was the first sign that my hair was going to start coming out. And out it came, in fistfuls. For me this was tough, it was the external manifestation of what was going on inside my body. I felt somewhat OK and semi-functional, but when I looked in the mirror, I was quickly reminded that all was not well. I slept with a handkerchief on my pillow to make the morning cleaning of my shoulder length hair strands easier. It was hard to see all of it in the trash can every day, big fluffy mounds of it.
With a hat, I still had some strands that helped me look fairly normal, but I finally came to terms that I was going to lose it all and shaved it. I didn’t want to wait for an appointment with my stylist, as I felt today was the day! I ended up at Great Clips near my house and it turns out they do this for free for cancer patients (apparently many places do this). That was so nice to discover as I was feeling pretty anxious about it.
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Of course, it’s not just the hair on top of your head that goes, it ALL falls out. No more shaving the legs and underarms is a plus! I met an amazing woman at the Bobby Brown cosmetic counter, who was a breast cancer survivor, and she taught me how to draw on natural eyebrows, it helped me felt less self-conscious about the whole thing.
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I bought some fun colorful wigs online and was encouraged to have one made that I could wear in professional situations. I had gray hair prior to losing it and a custom wig made of natural gray hair was rather pricey. I went ahead a bought it and it looked amazing, but I rarely ever wore it. I wasn’t leaving the house much because of my compromised immunity and I mostly wore knitted cotton caps or bandanas. My head felt weird with no hair and made me a little cold, so I always liked to have something on. At the same time, I found it incredibly hot to wear a wig in the summer, another reason I didn’t wear it much.
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Hair is a major way we use to describe ourselves, it’s a big part of our identity. I had an 8-week break in my chemotherapy treatment while I prepared for surgery. By the time we started the last 3 cycles of chemo I had 4 months of hair growth and was starting to feel more myself as I healed from surgery. I knew once the chemo started I would also lose my hair again. I decided to try the
Paxman cold cap system that my hospital offered. It was the coldest experience I have ever had in my life, but it saved 100% of my head hair. Read all about my experience here.
Mouth Sores
Mouth sores are your worst nightmare come to life. It’s bad enough that you feel like hell in general, but now eating and even drinking water can become an exercise in torture. I had heard about oil pulling several years prior as a thing to do for general health, but never tried, it just sounded too gross. I had 9 weekly infusions of Carboplatin, Taxol and Avastin. Near the end the mouth sores were desperately trying to bust through, I was getting small breakouts that would move around my mouth, looking for an entry point to take over. They never did and I never had any real issues with eating or drinking.
Many people praise magic mouthwash and I was given a bottle from my doctor. Once I read the ingredients, I decided there had to be another way, I just couldn’t justify putting more chemicals in my body! This may seem like a lot of work and it is definitely more than the average person has to do. Here is what worked for me.
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Brush teeth 3xs a day, keep it clean and the bacteria down.
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Oil pulling at least once a day in the morning (when a flare came on I would do it again before bed). I still do this, although not as religiously as when on chemo.
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Rinse mouth with warm water, baking soda and salt (multiple times a day if needed).
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Rinse with custom-blend Mouth Rinse from Sobotanical. This item may not be on their website, but if you contact them they will make it for you. It’s an amazing blend of natural botanicals that were part of my regime, you can feel it working in your mouth. I buy most all of my skin care from here – totally natural and no chemicals (as stated in the footer, I receive no compensation from products I recommend).
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When I was feeling a flare-up I would also take Super Immune+ supplements with lysine, astragalus root and olive leaf. Just be careful because I found that too much lysine when you are healthy can actually give you cold sores, I only take this as a defensive move.
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Oil Pulling Recipe
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2 teaspoons Coconut Oil
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3 drops Peppermint Oil
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2 drops Clove Oil (optional)
I know this sounds unappealing and your gag reflex may kick in the first time, but give it a try, it really does help. Swish this around in your mouth for 20 minutes (you may need to start shorter and work your way up). I do this before showering or with minor home chores. Spit out into trash can, do NOT put down sink drain or toilet, it can re-solidify and clog things up. After a few times you do get used it, I promise!
This is an ancient Ayurvedic technique for oral hygiene that also helps pull toxins out of your body, lots of information online. I borrow this recipe and found this post and video super helpful.
Bone Pain
Bone pain is a common side effect if you are getting an injection to help boost your red and white blood counts that can get depleted by chemo drugs. Neulasta or Filgrastim are common brands, they temporarily boost production from bone marrow which can result in some major bone ache pain (like when you have the flu, but much more intense). The miracle off-label solution for this is the antihistamine drug Claritin (regular, not Claritin-D). One, 10-gram pill the day before, the day of chemo and 5 days after works extremely well. You may still feel some fatigue and minor body ache, but nothing nearly as severe if you don’t take these.
Gastrointestinal Functions
Constipation. Diarrhea. You may ride a constant wave of this and its relentlessly exhausting. Part of the game of low blood counts and needing to stay home (away from people) is that you can always be in close proximity of the privacy of your own bathroom! The HIPEC surgery left me with a great deal of recovery in this area, it took at least 5 months until things were somewhat normal and reliable.
Constipation was the majority of my issues. Things moving slowly or not at all. When you are eating normally, things not moving is not sustainable and gets painful. I tried many options and researched a great deal. Muscle stimulants like Colace and Senna will get things moving immediately but were a little too volatile for me (like colonoscopy prep every day!), not pleasant. Also, these are not good long-term solutions, as too much use can cause your body to stop stimulating bowel movements on its own, naturally.
I tried osmotic stool softener laxatives that increase the amount of water in the intestinal tract to stimulate bowel movements. Products like MiraLAX are basically polyethylene glycol (yuk! More chemicals in my body).
Someone online recommended the perfect solution, something I already had on hand, magnesium citrate powder. This “calming” supplement was something I had used in the past to help me sleep. My life changed dramatically with this. Things were now moving in a normal fashion, no urgency and no cramping pain. I like the Calm brand unflavored variety because I don’t like the taste of stevia. Start with 500mg and just dissolve in water. I would add a little maple syrup because it’s very tart. The beauty of the powder is that you can easily vary the dosage, 750mg would definitely get things moving for me and then I would bump down to 500mg for maintenance. Take before you go to bed and it will fully kick in by morning. The calming effect and boost in your magnesium levels are a bonus!
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On occasion when I would have loose stool (diarrhea) I was recommended to take Benefiber or Metamucil. Another man-made chemical product that absorbs water from your intestines to form bulkier stools for easier bowel movements. After a little research I decided to go to the natural and original source that these products are based on – psyllium husk. Easy to find and less expensive, just add water and a little juice for flavor if you like. Works quickly and effectively.
Epsom Salt Baths
This is an old school technique, something my dad would make us do when weren’t feeling well as kids. The problem with chemo is you are basically burning down an entire forest to try and kill a handful of trees. It’s a very toxic approach (that works) that builds up over time and can do damage to much of your body. Aside from the relaxing feeing of a warm bath, Epsom salt baths are another way to help pull toxins out of your body. Fill the tub and add 2 cups of magnesium sulfate (Epsom salt - some people also add baking soda), I would add a few drops of lavender essential oil for the full calming effect. Soak for 40 minutes - I know this seems long, but it appears that it takes that long to really start to draw things out.
I would do this the evening of chemo infusion and at least 2 more times that week. I found it really relaxing before bed, magnesium is a calming mineral (especially when those pre-med steroids have you buzzing). Light a candle, listen to some music, a book or a good podcast and the time will fly by. Rinse off in the shower afterwards so it doesn’t dry out your skin. This is also good for you as your magnesium levels may get low with chemo.
I bought a big bag on Amazon, much more cost-effective than what you will see in a store.
Acupuncture
Acupuncture is an ancient Chinese medicine-based approach to treating a variety of conditions by triggering specific points on the skin with thin needles. There is a great deal of documentation about how it stimulates the immune system and various health benefits. I was a little late to the game on starting this and have been hindered in getting back to it with COVID. I really enjoyed it and found it fascinating how different treatment approaches can address difference issues (often where they insert the needles is nowhere near where your issue is located). I was having a very unusual issue of skin on my face breaking out, which I had never experienced before. I could not decipher if it was from perimenopause or the cancer, but it was chronic. Acupuncture helped calm my skin down, and alleviated the bone and neuropathy pain. I will definitely incorporate this into my lifestyle of trying to stay cancer-free.
Medical Cannabis
It’s funny that a drug we were told to stay away from our whole lives can be so helpful. I was not a user of cannabis prior to my cancer diagnosis (oh sure, I certainly “inhaled” a few times over the decades), but knew I wanted to add it to my arsenal. There is starting to be some clinical evidence that cannabis and CBD can help to fight cancer and my oncologist was fully supportive of me using it.
Cannabis turned out to be an important component of surviving my treatment. When receiving chemo, I would also get a variety of IV pre-meds to deal with side effects. These drugs worked very well for me, I almost never had nausea and my appetite was active. One of the drugs was a steroid that was also a stimulant that made it difficult to sleep, even though my body was exhausted. I would take cannabis in the evening to help me fall and stay asleep. It worked very well and did not leave me groggy in the morning. I continue to use it for sleep, as hot flashes from my hysterectomy can make getting a good night sleep challenging.
Finding a good dispensary with knowledgeable staff is key to having a successful experience. There are many different ways to ingest cannabis and a wide variety of strains and combinations. There are good online resources, but I found it challenging to decipher some of it and understand what approach would be best for me. After trying a couple different dispensaries, I found one that I really like.
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CBD is all the rage, but is really most effective when combined with THC. I find that a 1:1 ratio of CBD:THC combination works best for me, and I usually take it tinctures and gummies form. Find a dispensary that has a wide product variety and will take the time to help you understand the options. Try some different types and see what you like and what works best, you may have a few products to deal with different issues.
Water, Water, Water...
As we know, chemotherapy drugs are very toxic to your body and build up over time. Eating healthy, exercising and drinking a lot of water are easy ways for you to be part of your healing.
Drinking water helps to flush toxins out and its important that you stay hydrated. I would aim for at least 100 ounces of water the day of chemo and 3 days after. Keeping my minimum in-take no less than 80 ounces a day, which I continue today.
During this time I stayed away from tap water and mostly drank bottled spring, mineral or alkaline water – preferably in glass or tetra boxes. I know this was probably overkill, but I was drinking water like it was my job and wanted it to be as clean as possible.
After a couple of chemo infusions water suddenly tasted metallic, which is not uncommon. I had read that making the water a little sweet or acidic helps – adding a bit of maple syrup was a perfect solution. I only needed to do this for a couple of weeks and then it went away.
Exercise
Leading up to my cancer diagnosis I was quite active, golfing and working out twice a week with a trainer. It was no wonder I was getting winded so easily after they drained nearly a gallon of fluid from my abdomen and lung after the diagnosis, there was no room for my lungs to expand!
The lack of energy and relentless exhaustion from the chemo left me struggling to climb a flight of stairs. I was not used to feeling like that and was determined to get my life back. I tried to get in some walking every day, starting with just 10 minutes. Some days were better than others, it’s not easy to predict, so you do what you can. On chemo days I would have a lot of energy for about 36 hours and would get in some great walks.
It was important for me to keep moving for my mental health (getting outside of the house!), it helps keep the digestive tract moving and is a fun thing to do with friends that want to help and visit you. After surgery I just walked around the house, I felt far too unsteady to venture out. As things progressed, I added in some weight resistance exercises and things got better, but in general it took much longer than I wanted to regain full strength and energy. It was 7 months after surgery that I was back working out with my trainer again. My motto here was to be kind to myself and try to do a little better every day.
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This photo is me one month after surgery, desperately trying to regain back some level of control over my life. I am struggling with 5 pounds, but I was determined to keep pushing everyday I was up for it.
