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Looking for Chemo tips/tricks

EmSoprano
Posts: 1
Joined: Feb 2021

My name is Emily and I am 34 years old.  I was diagnosed with Stage 3 Colon Cancer in early January.  I'll be starting the Cap-Ox treatment soon and am wondering if anyone has tips or tricks I should know? 

  • Do you use any mouthwash to prevent mouth sores?
  • Any lotions to prevent hand/foot syndrome?
  • Are there any diet tips to keep in mind during treatment?
  • Did you lose your hair or see thinning?  If so, can you reccommend any shampoo/conditioner/hair products to help with regrowth?
  • Anything else you did that was helpful that I should be aware of?

 

I am nervous about treatment and would love to hear anyone's experience with Cap-Ox.

 

Thank you!
Emily

Trubrit's picture
Trubrit
Posts: 5491
Joined: Jan 2013

Sorry you are here. Nobody wants to join our little group, but alas, patients and caregivers find their way here and I am betting, most find it vrey helpful, and some of us gain life-long friends. 

I was on FOLFOX, but can give a few hints becasue allot of side effects are the same or similar. 

For me, a mouth wash with a mixture of 1/4 teaspoon Baking Soda, 1/8 teaspoon Salt and warm water, worked for the awful mouth sores. If I was on the ball, and swished (don't swallow) every single day, it was enough to keep the mouth sores at bay. 

I tried a number of unctions for my hands and feet, until I found one that worked the best for me. Of course, we are all different, and what might work for one, might not for another.  I liked CerVe myself. 

My hair fell out and I was left with thin clumps - I always say I looked like Gollum from Lord of the Rings. I ended up shaving it off, which looked much better.  I did not find or use anything to help the hair.  Now I think I might have tried Rosemary essential oil mixed with water. Who knows if it would have worked, but it sure does smell lovely. 

Lots to share, but I will add a few today, and let others share also. 

Take it one day at a time. Don't race ahead, to what may be happening in the future, be in the moment and take care of the now. 

Keep active. While you may get to a point where the fatigue is dibilitating, the more active you are at the beginning, duing those early treatments, the better it will be for you.  Chemo accumulates in the body, and as treatments progress, you may find that side effects become more prominent - and you may be lucky enuogh to breeze right through the chemo; I wish that for you. 

I wouldn't restrict diet during chemo, becasue you may find that the weight will start dropping off regardless, or that your appetite will diminish. I had a hard time swallowing, and food became a chore. I lost allot of weight, which wasn't too much of an issue, as I had a little extra to lose. 

Well, thats enough from me for the moment. 

I look forward to getting to know you here on the forum.

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 1186
Joined: Apr 2017

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.

abita's picture
abita
Posts: 1067
Joined: Dec 2017

If you get a mouth sore, forget homemade remedies. Get the steroid mouthwash prescription from your doctor. It works really well. I didn't know there was such a thing and it got so bad I couldn't open my mouth, but that mouthwash worked so fast! I hardly ever get mouthsores, but any hint, and I use the steroid mouthwash. As my oncologist nurse told me, they have solutions to the side effects, no need to suffer.

SnapDragon2's picture
SnapDragon2
Posts: 573
Joined: Nov 2019

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.

 

ellend
Posts: 108
Joined: Apr 2016

Sorry about your diagnosis and so young. As far as chemo goes I was pretty lucky in that I tolerated it pretty well. I do have a bit of lingering peripheral neuropathy, mainly in my feet. I had FOLFOX, but it is the oxipilatin that caused many of the symptoms. Keep your hands moisturized, which can be a bit of a challenge with all of the sanitizing and hand washing, but is important because the chemo will probably exacerbate the dryness and cracking. My hands got very sensitive to cold, so I had to use gloves to get things out of the fridge and freezer. I also could not drink anything cold for a few days after the infusion because cold liquids felt like shards of glass.

About halfway through I felt very tired the week of the infusion, especially after the bolus was finished. I got out of bed, but then mainly sat in a recliner for the next two days or so. I did do some walking, but not as much as perhaps I should have as soon as I started feeling better. I think that does help.

I didn't have any extreme nausea, the anti-nausea drug they used prior to the chemo seemed to do the trick. The nurses told me to let them know if I felt nauseous because they could help with that.

The infusion takes a few hours, so you might want to bring snacks and something to read. The center where I went had some light snacks and juice. You might also bring a pillow and your own blanket, though the centers probably also have blankets.

Everyone has a different experience and I hope the chemo does what it is supposed to and you are able to tolerate it.

Ellen

abrub's picture
abrub
Posts: 2175
Joined: Mar 2010

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.

 

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

Sorry you had to join, but glad that you found this great board.  We are here to help you get through this with support, care, and lots of compassion.  Someone told me to us Nioxin products during chemo as it helps with hair loss.  I'm not sure how true it is because my hair is naturally thin, but no one could tell that that my hair was thinning except me.  Also they gave me "miracle mouthwash" for the sores.  You received a lot of great information above so there is not much for me to add.  Just want to say welcome, and wish you the best going forward.  If you have any questions, please don't hesitate to ask.

Kim

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