Dealing with Chemo

I know that much has been said here.  I've consolidated pointers from my experiences as well as others, as so many friends now have turned to me for advice for themselves or family members, so I thought I'd add it here.  Please feel free to add suggestions or your own experiences.

 This is my own list, my own creation based on my experiences.  It should not be construed as medical advice, but rather as a jumping-off point for questions to your dr.

 There are 2 parts:  the first is General Chemo Tips; the second is more specific to Folfox and Avastin 

1. Emla – Ask doctor for a prescription for Emla Cream before starting chemo.  This is a local numbing cream that should be gobbed over your port an hour or so before chemo. This way, you won’t feel the needle stick when they access the port.  (Note:  I used it for both my belly port and my chest port – yes I had chemo directly into my belly.  It is a miracle med!  I never felt any pain.)

Use a thick coating of cream (don’t rub it in) covered by plastic wrap or a Tegaderm until chemo.  The nurse will remove it.

 2. Mouthwash – Chemo commonly causes mouth sores.  My onc advised me to rinse my mouth regularly with a solution with equal parts salt and sodium bicarb (baking soda).  I kept a jar by my sink, dumped a spoonful into a cup of water every time I walked into the bathroom, and rinsed at least 4 times a day throughout chemo treatment, not just on chemo days.  I had minimal problems with mouth sores. 

3.  Anti-nauseants – if you have any concerns about nausea, and not everyone gets sick, it is important to keep ahead of it.  Ask for Emend for chemo days (and two days more.  It is a 3 day dosage.)  There are a variety of other meds such as Zofran and Ativan.  It is important to keep ahead of the anti-nausea meds, and not wait until you get sick.  Thus, I took Zofran every 8 hours like clockwork during chemo and for a day or so after. 

Of note, it has been shown (you can find legitimate research) that ginger supplements enhance the anti-nausea abilities of the meds.  The recommended dosage of ginger is one capsule twice a day.  Supposedly, that works better than either more or less.  I didn’t use ginger – the research came out after I was done with chemo.

4. Claritin (Loratidine) – something currently in research, but recognized by many cancer patients is the use of Claritin if patient is getting neupogen or neulasta injections.  Somehow, Claritin cuts down on the degree of bone pain that results from the stimulation of the bone marrow by these drugs.  It is recommended to take Claritin every morning, starting the day of the injection, and continuing for a few days after.

5. Neuropathy – Ask if neuropathy is a concern with your chemo.  If so, start on Vitamin B6: 50 – 100mg 3x/day to help avoid it (tho it didn’t help me.)  Ask about Magnesium Citrate, Glutamine, and Alpha Lipoic acid.

6. Supplements and diet – be sure to tell the dr about any and all meds and supplements.  During chemo and radiation, anti-oxidants can MINIMIZE or counteract the efficacy of the treatments and thus work against you. I can give you links to lectures from Memorial Sloan Kettering Cancer Center’s Integrative Medicine group that discusses and explains this.  While you should eat normally, don’t overdo things like green tea and blueberries, and don’t take supplements of anti-oxidants.

Folfox-specific  tips: 

FOLFOX/Xelox chemo tips (Capecitabine is the oral form of the 5FU) – based on my personal experience. 

1. The 5FU (Xeloda/Capecitabine) causes tenderness/breakdown and/or darkening of the skin. Moisturize hands, feet with Bag Balm (an ointment) or Udderly Smooth(a cream) regularly to avoid cracking of skin. Also, as this chemo is for the digestive tract, make sure to GENTLY but thoroughly clean after using the toilet. (The anal fissure I developed was the last straw in my decision to quit chemo; the pain was obscene. Also note that chemo was somewhat optional in my case.)

2. Chemo side effects differ for everyone. However, keep ahead of the anti-sickness meds; once you get sick it’s too late to start. (Not everyone gets sick.) This chemo may cause constipation and/or diarrhea (or a few days of one followed by the other.) It constipated me; I had to take stool softener and senna during my chemo days and for 2 days after.

3. Oxaliplatin almost always causes a severe reaction to cold. Don’t eat or drink anything cooler than room temperature or your throat may feel like it’s seizing up or you’re swallowing glass. (That will subside.) Gloves for the fridge; a scarf over your nose and mouth in the chilly weather. Partner needs to thoroughly warm up the car before you get in. I also lost fine motor skills, and could tell the instant the temp went below 68F. I couldn’t button, fasten my seatbelt, etc. This lasts a few days, but longer each cycle. Solutions: use plastic flatware (metal silverware hurts) or chopsticks.

4. With Oxaliplatin, there is an uncommon but known side effect of “first bite pain” where with the first bite of food you feel like you’ve been hit in the face by lightening. It wears off after 10 – 30 seconds, and then you can eat normally. I had that, and dealt with it by starting my meals with a pea-sized bite of bread (so that I could get past the pain, and spit it out if necessary.) Then I could eat normally. Note: this is very uncommon, so it’s not usually mentioned regarding side effects.

5. Neuropathy is a common side effect. I was told to take B6 (50-100mg 3x/day). It didn’t help me much. You can ask about Alpha Lipoic Acid, Glutamine, and Magnesium. They might give you gabepentin if it gets bad.

6. It’s common to be extremely tired.

7. Start doing mouth rinses (equal parts salt/baking soda – ½ tsp in a cup of warm water) several times a day on the day you start chemo. Do it every day (every time you walk into the bathroom) at least through the first week of the cycle. I just did it daily throughout my chemo. This will help you avoid mouth sores.

8. If you have low blood counts and need neupogen or neurontin, ask about taking Claritin/loratadine every morning from the day of the shot for the next few days. This has been shown to minimize bone pain that is a common side effect from these blood strengtheners.

9. With Avastin, report any rectal bleeding immediately.  It can (but rarely does) cause bowel perforations.

10.  Don’t assume any side effect is normal. Report everything to your oncologist or chemo nurse – don’t just “suck it up.” They want to make this as tolerable as possible. Most people end up having chemo doses cut – they start at the highest for your height/weight, and have plenty of room to cut back while still providing effective chemo.