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Questions on behalf of my mother

Krista72
Posts: 1
Joined: Sep 2018

My mother has stage 4 which has spread to the liver.  She did 4 or 5 treatments with Folfiri but the tumors have grown/multiplied and they have switched her over to Folfox and Avastin. 

She is experiencing first bite syndrome and she can't hold anything cold - her fingers pain her when she does.  I understand that these are common side effects but my question is - do these problems go away after a while, or is she going to continue experiencing them?

 

Thanks in advance!

-Krista

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

Yes, it subsides. Here are tips I compiled for this chemo:

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. 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.

abita's picture
abita
Posts: 585
Joined: Dec 2017

For me, the cold side effect lasted the first week of cycle, the second week was okay. If have the take home 5fu, the 2 days following disconnect are the most fatigued. I bought an organic diaper creme. Only used it a couple if times. But when I needed it, I really needed it. I was on folfox, surgery then folfiri. The folfiri did not work. And I got a recurrence. I have just started folfox again. Nothing to do with side effects, but I suggest that her tv watching be comedies. The fatigue is real, so I watch a lot of television. Sad shows make this sadder.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

First bite and cold sensivity do go away. Good thing as I faced temperatures of ten to twenty below in the first month.

plsletitrain
Posts: 253
Joined: Jul 2017

I believe the side effects accumulate every treatment so the longer she goes, the more side effects become apparent.  I noticed this in my case.  I had 3 folfox last year (no side effect at all), 4 capox (tired, started losing appetite, extreme numbness of hands) and now back to folfox (loss of appetite at 2nd round, extreme numbness of hands), but so far hadn't had the neuropathy (crossing my fingers it goes that way forever).  I agree with what abrub said about the coldness, I don't drink cold water anyway so I never knew but one time there was no room-temp water so I had to drink a cold one and yeah, it did really hurt as if you're swallowing glass. 

Having said that, side effects vary from person to person so make sure that she manages her side effects by proper meds.  Good luck to your mom. 

abita's picture
abita
Posts: 585
Joined: Dec 2017

I actually found that after a few rounds, room temperature water hurt the first week. I learned to hold in my mouth for a second before swallowing. 

Annabelle41415's picture
Annabelle41415
Posts: 6151
Joined: Feb 2009

First Bite syndrome and cold sensitivity is common but it is so stressful.  It's sometimes better to put a little food in the mouth in the front and slowly move it to the back but that doesn't always work either.  The cold sensitivity is terrible when not expecting it.  Make sure that even in the grocery store she is aware of the cold vegetable isle and freezer section as this can really affect your body.  It does get better after a couple days but the longer someone is on treatment the longer the effects can last.  If it gets bad enough where she feels numbness in the hands and feet and it doesn't go away, talk to the doctor.  Let the doctor know all side effects.  Wishing your mother well.

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I hated the neuropathy. So many things I'd touch not expecting them to give me a shock but they did anyway. Door handles, light switches, the toilet handle, all kinds of things. I found myself walking around saying 'oh, crap' so many times. It was stressful. It was winter so the ambient temperature made things cold that maybe wouldn't have been in the summer. I had several pairs of those cheap little cotton gloves you can get at Wal-Mart for a buck so that I could do things like cut vegetables but everything was so awkward. It did go away after, though, and fairly quickly.

The neuropathy has stayed in my feet, though, but it's just a feeling like I'm standing on that plastic wrap that has the bubbles that everyone pops. And most of the time I'm unaware of it. It's been 4 years.

I hope your mom can tough it out. Take care.

Jan 

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