Looking for Chemo tips/tricks

As a preliminary matter, it strikes me as valuable to understand how much of a benefit the chemo may give you.  For me, it was maybe a 10% reduction in the chance of recurrence of cancer as a 3b.  I considered not doing it, but tried it to be sure I was doing everything in my power to reduce the chance of recurrence.

Everyone reacts to chemo differently.  Some breeze through it. I did not.  For the oxaliplatin, be sure they give the infusion in the non-dominant (usually left) arm.  Mine felt like it had been rolled in broken glass, so I was sure glad to have better function in my right arm.  Also, give yourself time to see how you do.  Tips about cold sensitivity are valuable, as I went shopping for an easy meal after my infusion and almost threw a frozen dinner accross the supermarket.  Also, you might want to get medications for nausea in advance of your treatment, as it can be overwhelming.

If I were to do it again, I would get my oncologist to agree to a 50% dose of oxi the first time.  Then you can gauge your reaction.  Mine only agreed to an 80% infusion, which was too much for me.

With the capecitabine, it can sneak up on you.  At first it feels like nothing, but for me, many of the predicted side-effects snuck in.  The great thing with the pills is that you can adjust the dosage, so that on a bad day, you can skip the second dose (if you tell the doctor you are considering quitting, they suddenly become much more liberal about dosages and days off).  I never did make it to the full dose of capi, just about 50%.  Everyone is different.

I used Eucerin cream (actually, the Walmart knock-off) on my hands and feet since before the chemo.  It worked well and I had no problems.  Mouth issues, yeah, I had them.  Nothing really seemed to work.  

As Tru said, exercise helps.  I walked for about an hour, twice a day during chemo.  Some people are not able to do it.  Everyone is different.  I also agree with Tru on diet.  It is great to eat healthy, but keeping your weight up is essential.  Eat what you crave or can tolerate.  Former favorite foods may become unpalatable.  Just get the calories in until you see how you do.  Some people recommend trying to put on a few pounds before starting chemo.  

Some days are better than others on chemo, and it is best not to plan social engagements or trips without giving yourself a possible out if it is a bad day.  With that said, the week off (if you do two on, one off) was a great time for me to do a long hike.  I went out to Grand Canyon and hiked to the river and back on just about every break in the chemo.  I think the exercise helped, plus it was the only time I got to forget about cancer and chemo for a while.

As for hair, mine was unaffected, other than that my body hair grew longer.  Weird stuff happens on chemo.

Anyway, that is probably more than you care to hear, just ask questions and review old posts as things occur to you.

Good luck with the days ahead.

Avoid food with folic acid.  Research folic acid and chemo.

If CEA is not a good marker have them begin monitoring CA19-9 and LDH instead.

Keep up with your bloodwork and ask questions and don't take NO for an answer and don't let them brush off anything or ignore what you think is important.

If prescribed magic mouthwash.  You really don't need to whish it around in your mouth if you only get one or two sores.  Just put it on a qtip and apply straight to sore.  The mouthwash numbs your whole mouth.

All I can think of at the moment.

I've copy and pasted below a full set of chemo notes that I prepared while I was on FolFox (same as you are getting, but with the IV 5FU, and not the oral.)

More recently I was on FolFiri (same tips applied, though no cold issues which are unique to oxaliplatin.)  Then they wanted me on 5FU only, so we tried the oral version (Capecitine).  I started having hand-foot issues the first week, so they moved me back to the IV and the 5FU pump.  People tolerate these two forms of 5FU differently.  For some, the oral (Capecitine) form has fewer side effects; for others - IV 5FU is better.  But know that if you are having problems with the oral form, you can ask for the IV (which entails a 3 day pump every other week.)  Your Oxaliplatin would be adjusted to the biweekly dosage as well if you did that.

Alice

General Chemo pointers  (Folfox specific follows)  

 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.  Note:  they can now premedicate you via your infusion with the Emend that lasts 3 days.  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.)  I now have a bidet seat that is worth its weight in gold.  And I moisturize with Aquafor or coconut oil after going.

 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, especially AFTER you are unhooked (if IV 5FU)

 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. 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 adjust.