Oxaliplatin & xeloda side effects??? Starting next week

Htobin

I have heard from my onc and read side effects online but I wanted to really hear from people who have experienced this- weight loss/gain?, how bad is the nausea?. I will be starting with 3 rounds of Oxaliplatin and then the 14 days of xeloda after each infusion. 

 

I have ovarian cancer, but my subtype is more rare so they opted for a GI regimen. I am also 19 so not sure if the side effects will be at all lessened by my younger age?

 

thanks Hanna 

abrub

I had that chemo

My cancer, found on my ovary, turned out to be of appendiceal origin, so the colorectal drugs were appropriate. (That's why I lurk on the Ovarian Cancer board.)  Note:  if that's the case with you, please get to an appendix cancer specialist!

I just wrote up a sheet of information on this chemo combination for a family member who is starting this week.  He's getting the IV form of Xeloda (5FU) but the Oxaliplatin is infused.  He's getting "Folfox", you are getting Xelox; both are the same, but one uses the pill form of 5FU (xeloda) and the other uses the IV form.

1.    Be sure to get the Emla cream for the port (after the first infusion.)  It numbs the area so that you don't feel the needle and makes a world of difference.

2.    Note:  do note go to an anti-cancer diet that is high in anti-oxidants.  This is one time when your green tea, blueberries and pomegranate are not your friends. I was told no more than 1 cup green tea per day, if I had to have it. Chemo works by oxidizing; anti-oxidants can diminish the effect of chemo. (I can give you the references to MSK about this.) ASK BEFORE TAKING ANY SUPPLEMENTS, herbal or vitamin.  (Ask about vitamin D, and possibly a referral to MSK Integrative Medicine.)

3.    The 5FU (Xeloda) 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.)

4.    Chemo side effects differ for everyone.  However, keep ahead of the anti-nauseants; 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 colace and senna during my chemo days and for 2 days after.

5.    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.

6.    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.

7.    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.

8.    It’s common to be extremely tired.

9.    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.

10. If you have low blood counts and need neupogen or neurontin, ask about taking Claritin 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.

11. 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.

 

And send me a Private Message if you want more info.

 

Alice

dx'd 2007

NoTimeForCancer

abrub said:

I had that chemo

My cancer, found on my ovary, turned out to be of appendiceal origin, so the colorectal drugs were appropriate. (That's why I lurk on the Ovarian Cancer board.)  Note:  if that's the case with you, please get to an appendix cancer specialist!

I just wrote up a sheet of information on this chemo combination for a family member who is starting this week.  He's getting the IV form of Xeloda (5FU) but the Oxaliplatin is infused.  He's getting "Folfox", you are getting Xelox; both are the same, but one uses the pill form of 5FU (xeloda) and the other uses the IV form.

1.    Be sure to get the Emla cream for the port (after the first infusion.)  It numbs the area so that you don't feel the needle and makes a world of difference.

2.    Note:  do note go to an anti-cancer diet that is high in anti-oxidants.  This is one time when your green tea, blueberries and pomegranate are not your friends. I was told no more than 1 cup green tea per day, if I had to have it. Chemo works by oxidizing; anti-oxidants can diminish the effect of chemo. (I can give you the references to MSK about this.) ASK BEFORE TAKING ANY SUPPLEMENTS, herbal or vitamin.  (Ask about vitamin D, and possibly a referral to MSK Integrative Medicine.)

3.    The 5FU (Xeloda) 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.)

4.    Chemo side effects differ for everyone.  However, keep ahead of the anti-nauseants; 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 colace and senna during my chemo days and for 2 days after.

5.    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.

6.    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.

7.    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.

8.    It’s common to be extremely tired.

9.    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.

10. If you have low blood counts and need neupogen or neurontin, ask about taking Claritin 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.

11. 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.

 

And send me a Private Message if you want more info.

 

Alice

dx'd 2007

Thank you for the detailed

Thank you for the detailed explanation, Alice!  I learned something new.  I don't think people have any idea eveything people go through when they get chemo - and while everyone is different - this was very thorough.

abrub

PS - Hair loss is not a common part of this chemo

While your hair may thin or change texture (mine went dead straight), hair loss is not a given with this chemo.  I lost body hair, but not the hair on my head.  Just a side note...

Alice

Htobin

abrub said:

I had that chemo

My cancer, found on my ovary, turned out to be of appendiceal origin, so the colorectal drugs were appropriate. (That's why I lurk on the Ovarian Cancer board.)  Note:  if that's the case with you, please get to an appendix cancer specialist!

I just wrote up a sheet of information on this chemo combination for a family member who is starting this week.  He's getting the IV form of Xeloda (5FU) but the Oxaliplatin is infused.  He's getting "Folfox", you are getting Xelox; both are the same, but one uses the pill form of 5FU (xeloda) and the other uses the IV form.

1.    Be sure to get the Emla cream for the port (after the first infusion.)  It numbs the area so that you don't feel the needle and makes a world of difference.

2.    Note:  do note go to an anti-cancer diet that is high in anti-oxidants.  This is one time when your green tea, blueberries and pomegranate are not your friends. I was told no more than 1 cup green tea per day, if I had to have it. Chemo works by oxidizing; anti-oxidants can diminish the effect of chemo. (I can give you the references to MSK about this.) ASK BEFORE TAKING ANY SUPPLEMENTS, herbal or vitamin.  (Ask about vitamin D, and possibly a referral to MSK Integrative Medicine.)

3.    The 5FU (Xeloda) 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.)

4.    Chemo side effects differ for everyone.  However, keep ahead of the anti-nauseants; 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 colace and senna during my chemo days and for 2 days after.

5.    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.

6.    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.

7.    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.

8.    It’s common to be extremely tired.

9.    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.

10. If you have low blood counts and need neupogen or neurontin, ask about taking Claritin 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.

11. 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.

 

And send me a Private Message if you want more info.

 

Alice

dx'd 2007

Wow, this was so helpful

Wow, this was so helpful thank you!

Htobin

abrub said:

PS - Hair loss is not a common part of this chemo

While your hair may thin or change texture (mine went dead straight), hair loss is not a given with this chemo.  I lost body hair, but not the hair on my head.  Just a side note...

Alice

That is interesting. I have

That is interesting. I have very wavy hair, did it keep Growing straight after treatments?

abrub

Htobin said:

That is interesting. I have

That is interesting. I have very wavy hair, did it keep Growing straight after treatments?

No

It eventually returned to my normal, curly hair.  It took a while for my chemo-affected hair to grow out.  (My family nearly disowned me!  There has never been anyone in my family with straight hair.  My siblings decided I couldn't be "one of them!")