Newbie - Colon Cancer Stage 2B - T4 - Folfox regime with port
I first created a blog thinking that was what I should do ... then I realized I needed to just post to discussion board. I would love to hear from you. I already had my colon resection (4 weeks ago) and have my 2nd round of chemo coming on Monday.
They put me on folfox regime. I felt great the first and second day. The second night I felt a little nauseous and the third and fourth day that continued...
I immediately had the tingling in the finger tips at cold. I had to test it several times because I couldn't believe it would come on so fast. Yes definitely have that. It also feels like a log is in my throat when I am swallowing cold water. I have just started reading some of the discussion boards and it is encouraging to see the people that have already gone through this and processed through... and all your encouragement to others. If you have any suggestions for nausea (I may learn to spell it by the time I am through with chemo)... any suggestions for the tingling fingers... and even for constipation... would love to hear it. I know that it all changes as you go through it... maybe I will have different problems next time. Looking forward to talking to some of you! Suggestions on keeping healthy, energetic... did any of you exercise through your chemo? What worked for you and what didn't? What supplements do you find help you? You seem like a great supportive group and excited to connect with you!
Comments
-
Hi Wendolyn...welcome!
I am on Folfox w/Avastin. I also have had the problems with nausea. What helps me if Zofran. I take 10 mg every 8 hours and I start taking them back to back 3 days before treatment. As far as the Oxaliplatin part, my neuropathy got too bad and they stopped the infusion for me at my 4th treatment. I don't have it in my cocktail anymore. My tongue and my lips feel like I've gone to the dentist and the novacane is still trying to wear off. I still have the tingling in my fingers. They believe these 3 things are permanent damage. I had a horrible time with the drinking cold drinks. It felt like broken glass at the bottom of my throat every time I swallowed. I also had blisters all inside my mouth after treatment. For that I used Magic Mouthwash; it's a prescription you can get from your Onc. I was able to drink Ocean Spray juices at room temperature or slightly cold while on the Oxaliplatin and it didn't hurt to swallow as much. Not a big fan of water but when I drink it, it has to be cold. So room temperature water just didn't work for me.
I'm sorry you had to have a reason to come on this board but I'm glad you're here. The people on here are great resources. It is therapy for me. It has helped bring me out of that initial depression I think you can't help but feel after diagnosis.
Just remember to keep hydrated and keep eating. I had an impact with my white blood cell count where it was too low to get treatments at first but now I take Neulasta shots and am always able to do treatment. Stay in tune to what your body is telling you and if anything doesn't seem quite right; call your Onc. That's what they're there for.
Take care of yourself!
Hugs,
Pam0 -
Hello Wendolyn. I just atepscott1 said:Hi Wendolyn...welcome!
I am on Folfox w/Avastin. I also have had the problems with nausea. What helps me if Zofran. I take 10 mg every 8 hours and I start taking them back to back 3 days before treatment. As far as the Oxaliplatin part, my neuropathy got too bad and they stopped the infusion for me at my 4th treatment. I don't have it in my cocktail anymore. My tongue and my lips feel like I've gone to the dentist and the novacane is still trying to wear off. I still have the tingling in my fingers. They believe these 3 things are permanent damage. I had a horrible time with the drinking cold drinks. It felt like broken glass at the bottom of my throat every time I swallowed. I also had blisters all inside my mouth after treatment. For that I used Magic Mouthwash; it's a prescription you can get from your Onc. I was able to drink Ocean Spray juices at room temperature or slightly cold while on the Oxaliplatin and it didn't hurt to swallow as much. Not a big fan of water but when I drink it, it has to be cold. So room temperature water just didn't work for me.
I'm sorry you had to have a reason to come on this board but I'm glad you're here. The people on here are great resources. It is therapy for me. It has helped bring me out of that initial depression I think you can't help but feel after diagnosis.
Just remember to keep hydrated and keep eating. I had an impact with my white blood cell count where it was too low to get treatments at first but now I take Neulasta shots and am always able to do treatment. Stay in tune to what your body is telling you and if anything doesn't seem quite right; call your Onc. That's what they're there for.
Take care of yourself!
Hugs,
Pam
Hello Wendolyn. I just ate warm things on the chemo days and a couple of days after.... a lot of soup. Even water, i had it a little warmer than room temperature. But you will quickly find out what works for you. The off week, I try to eat a variety of healthy things to sort of build up for the next week where i don't eat as much. I do a lot of walking on the days not on chemo. I wouldn't push it the first couple of days after chemo. If I was tired, I'd just sleep it off. Exercise is good, so do what you can. I don't lift weights, but then I never really did. Those exercise bands seem like they would be good....i have some, but they are still in the box. There were times when my legs/feet seemed numb, but the best thing for me was to walk. Less than a half a mile made the symptoms go totally away. My feet feel like they have sores on the bottom, but it's not painful, and actually it is kind of a good hurt....it's weird (maybe I'm always looking for a positive thing....dunno). I had diarrhea, no constipation. A stool softner works for constipation. Your chemo nurses or doc can make suggestions with the side effects. Like Pam said, keep hydrated, it also helps flush out the chemo which the nurses or doc may have already told you to do. Keep us updated. Joan0 -
welcome
Hi Wendolyn -- warm welcome to this board, although sorry you have cause to be here.
Sounds like you are in good hands and that things are going reasonably well for you. Please let me share my personal responses to a few of your questions. I've been on FOLFOX several times!
Nausea: there are many different nausea meds out there. I'm on Emend and Navoban at the moment (given before and during the chemo, and Navoban for 2 days after chemo). My advice is that you keep trying different meds and schedules until you find what work for you. May not be possible to totally control nausea, but get as close as possible.
Cold stuff: I totally avoid cold fluids (at least for the first week) - i've grown to quite like room temperature!
Tingles: yea. If it gets painful, rather than annoying, there are things you can try. I'm on Lyrica now (again, during chemo and for a few days after) and that seems to be helping....again, avoid touching cold things (good luck with that! I have to keep a kitchen towel right on the fridge door to remind me!)
Constipation: Don't know about you but I go thro several days of constipation during and right after the chemo -- and then suddenly, quite the opposite! if you know what I mean. I am just using natural means for the constipation: prunes, other dried fruit, prune juice (when I can tolerate it! not my favorite but very effective).
Exercise: absolutely! Keeps me sane. When you can stand it. Takes me a couple days after chemo. Do whatever feels good to you. Walking/hiking is my favorite but I cannot right now because of some problems with my feet. I've taken up rowing (machine), bit of gym, and yoga. All good for the soul as well as the body!
Supplements: I'm on the "light side" -- I take calcium, a multivitamin, and pretty hefty doses of vit D and B6....there are many on this board who are doing much more on the supplement side -- and I'm sure they will pitch in! One general rule of thumb seems to be check out your supplement use/plans with your oncologist -- who may have strong opinions on what you can versus should not be taking with your particular chemo regime....
Good luck!!
Tara0 -
Welcome
Welcome to the board, but sorry you had to join. You will find a lot of support here and just a lot of caring people. As you can see from some of the posts, we discuss anything. Guess once you have colorectal cancer your modesty just seems to go out the window. Heck we have all been poked and prodded and things taking your modesty away. You will have the tingling and you might have vision, dental, voice issues as well. Are you doing the 8 "insurance" treatments of chemo? Make sure you wear gloves if you need to get in the fridge or you will be in for a shock and also remember that this is cumulative so the more you get the more sensations will come on faster and could last longer. Not everyone has issues, but many do. Nice picture too. Keep that smile while going through this. Attitude is a big plus but don't try to be happy all the time - it's ok to get angry - that's healthy also. Once again, welcome.
Kim0 -
i like my supplements, chinese tea and diet
welcome and sorry you got crc.
the foreplay has finished, all the answers to many questions and what we tried are in the archives.
read the posts, read anticancer, read the liver bible.
pickup what gels with you, i found a great naturopath, she is still helping me.
i also brew chinese herbal medicine, got a great doctor in that area as well.
hugs,
pete0 -
There is a top 10 list......about Chemo treatments that I will..pete43lost_at_sea said:i like my supplements, chinese tea and diet
welcome and sorry you got crc.
the foreplay has finished, all the answers to many questions and what we tried are in the archives.
read the posts, read anticancer, read the liver bible.
pickup what gels with you, i found a great naturopath, she is still helping me.
i also brew chinese herbal medicine, got a great doctor in that area as well.
hugs,
pete
try and find for you...in general its about right for most Oxy patients......with a little twist to take the sting out...We do try and keep upbeat in here as much as possible.........buzz0 -
Sorry you have to go through
Sorry you have to go through this Wendolyn!
I ended my Folxfox Chemo in April 2011. I liked Lomotil for the diarrhea. Keep moving as much as you can. Some days I could walk miles, some days just around the block. The exercising helped keep me strong. Keep mentally strong by keeping positive people around you.
Stock up on alcohol free baby wipes, nupercanal, and soft toilet paper. Electrolyte replacement drinks and bananas was all I could keep down at times. I also liked ginger. Ginger dried, ginger snaps, ginger tea, ginger ale, etc... I purchased oven gloves from the local Target. These kept my hands away from the cold. Cold would burn me. Cold drinks, ice cream, etc....
Be sure to tell your oncologist about the tingling! This is a side effect, but do not let it get out of control. It is also a warning of the toxicity of chemo. My hands are finally getting better (Still dull feeling and not as sensitive as they were.) but my feet are pretty numb still.
My tastes for things also changed and are slowly changing back. I normally do not eat much sweet and prefer savory. Once chemo started I craved sweet.
Best Always, mike0 -
Thank you so much! I had apscott1 said:Hi Wendolyn...welcome!
I am on Folfox w/Avastin. I also have had the problems with nausea. What helps me if Zofran. I take 10 mg every 8 hours and I start taking them back to back 3 days before treatment. As far as the Oxaliplatin part, my neuropathy got too bad and they stopped the infusion for me at my 4th treatment. I don't have it in my cocktail anymore. My tongue and my lips feel like I've gone to the dentist and the novacane is still trying to wear off. I still have the tingling in my fingers. They believe these 3 things are permanent damage. I had a horrible time with the drinking cold drinks. It felt like broken glass at the bottom of my throat every time I swallowed. I also had blisters all inside my mouth after treatment. For that I used Magic Mouthwash; it's a prescription you can get from your Onc. I was able to drink Ocean Spray juices at room temperature or slightly cold while on the Oxaliplatin and it didn't hurt to swallow as much. Not a big fan of water but when I drink it, it has to be cold. So room temperature water just didn't work for me.
I'm sorry you had to have a reason to come on this board but I'm glad you're here. The people on here are great resources. It is therapy for me. It has helped bring me out of that initial depression I think you can't help but feel after diagnosis.
Just remember to keep hydrated and keep eating. I had an impact with my white blood cell count where it was too low to get treatments at first but now I take Neulasta shots and am always able to do treatment. Stay in tune to what your body is telling you and if anything doesn't seem quite right; call your Onc. That's what they're there for.
Take care of yourself!
Hugs,
Pam
Thank you so much! I had a hard time getting back on here! It is so great to feel like you are going through this with someone else... and it makes me feel more and more like hey I can do this!
I hope your fingers get better!
Wendy0 -
Thank you!taraHK said:welcome
Hi Wendolyn -- warm welcome to this board, although sorry you have cause to be here.
Sounds like you are in good hands and that things are going reasonably well for you. Please let me share my personal responses to a few of your questions. I've been on FOLFOX several times!
Nausea: there are many different nausea meds out there. I'm on Emend and Navoban at the moment (given before and during the chemo, and Navoban for 2 days after chemo). My advice is that you keep trying different meds and schedules until you find what work for you. May not be possible to totally control nausea, but get as close as possible.
Cold stuff: I totally avoid cold fluids (at least for the first week) - i've grown to quite like room temperature!
Tingles: yea. If it gets painful, rather than annoying, there are things you can try. I'm on Lyrica now (again, during chemo and for a few days after) and that seems to be helping....again, avoid touching cold things (good luck with that! I have to keep a kitchen towel right on the fridge door to remind me!)
Constipation: Don't know about you but I go thro several days of constipation during and right after the chemo -- and then suddenly, quite the opposite! if you know what I mean. I am just using natural means for the constipation: prunes, other dried fruit, prune juice (when I can tolerate it! not my favorite but very effective).
Exercise: absolutely! Keeps me sane. When you can stand it. Takes me a couple days after chemo. Do whatever feels good to you. Walking/hiking is my favorite but I cannot right now because of some problems with my feet. I've taken up rowing (machine), bit of gym, and yoga. All good for the soul as well as the body!
Supplements: I'm on the "light side" -- I take calcium, a multivitamin, and pretty hefty doses of vit D and B6....there are many on this board who are doing much more on the supplement side -- and I'm sure they will pitch in! One general rule of thumb seems to be check out your supplement use/plans with your oncologist -- who may have strong opinions on what you can versus should not be taking with your particular chemo regime....
Good luck!!
Tara
Thank you Tara! Such great information. It is great to know that others have gone through this before! I will take your advice re: prunes etc... I need to start my exercise back now!
Wendy0 -
Thank you!taraHK said:welcome
Hi Wendolyn -- warm welcome to this board, although sorry you have cause to be here.
Sounds like you are in good hands and that things are going reasonably well for you. Please let me share my personal responses to a few of your questions. I've been on FOLFOX several times!
Nausea: there are many different nausea meds out there. I'm on Emend and Navoban at the moment (given before and during the chemo, and Navoban for 2 days after chemo). My advice is that you keep trying different meds and schedules until you find what work for you. May not be possible to totally control nausea, but get as close as possible.
Cold stuff: I totally avoid cold fluids (at least for the first week) - i've grown to quite like room temperature!
Tingles: yea. If it gets painful, rather than annoying, there are things you can try. I'm on Lyrica now (again, during chemo and for a few days after) and that seems to be helping....again, avoid touching cold things (good luck with that! I have to keep a kitchen towel right on the fridge door to remind me!)
Constipation: Don't know about you but I go thro several days of constipation during and right after the chemo -- and then suddenly, quite the opposite! if you know what I mean. I am just using natural means for the constipation: prunes, other dried fruit, prune juice (when I can tolerate it! not my favorite but very effective).
Exercise: absolutely! Keeps me sane. When you can stand it. Takes me a couple days after chemo. Do whatever feels good to you. Walking/hiking is my favorite but I cannot right now because of some problems with my feet. I've taken up rowing (machine), bit of gym, and yoga. All good for the soul as well as the body!
Supplements: I'm on the "light side" -- I take calcium, a multivitamin, and pretty hefty doses of vit D and B6....there are many on this board who are doing much more on the supplement side -- and I'm sure they will pitch in! One general rule of thumb seems to be check out your supplement use/plans with your oncologist -- who may have strong opinions on what you can versus should not be taking with your particular chemo regime....
Good luck!!
Tara
Thank you Tara! Such great information. It is great to know that others have gone through this before! I will take your advice re: prunes etc... I need to start my exercise back now!
Wendy0 -
Thank you!Annabelle41415 said:Welcome
Welcome to the board, but sorry you had to join. You will find a lot of support here and just a lot of caring people. As you can see from some of the posts, we discuss anything. Guess once you have colorectal cancer your modesty just seems to go out the window. Heck we have all been poked and prodded and things taking your modesty away. You will have the tingling and you might have vision, dental, voice issues as well. Are you doing the 8 "insurance" treatments of chemo? Make sure you wear gloves if you need to get in the fridge or you will be in for a shock and also remember that this is cumulative so the more you get the more sensations will come on faster and could last longer. Not everyone has issues, but many do. Nice picture too. Keep that smile while going through this. Attitude is a big plus but don't try to be happy all the time - it's ok to get angry - that's healthy also. Once again, welcome.
Kim
Thank you for the welcome! I've seen some of your posts and you are such a positive influence and so welcoming! It is funny how my modesty has changed on these things! I am doing the 12 treatments one every 2 weeks? Gloves.. I need!
Wendy0 -
Thank you!Annabelle41415 said:Welcome
Welcome to the board, but sorry you had to join. You will find a lot of support here and just a lot of caring people. As you can see from some of the posts, we discuss anything. Guess once you have colorectal cancer your modesty just seems to go out the window. Heck we have all been poked and prodded and things taking your modesty away. You will have the tingling and you might have vision, dental, voice issues as well. Are you doing the 8 "insurance" treatments of chemo? Make sure you wear gloves if you need to get in the fridge or you will be in for a shock and also remember that this is cumulative so the more you get the more sensations will come on faster and could last longer. Not everyone has issues, but many do. Nice picture too. Keep that smile while going through this. Attitude is a big plus but don't try to be happy all the time - it's ok to get angry - that's healthy also. Once again, welcome.
Kim
Thank you for the welcome! I've seen some of your posts and you are such a positive influence and so welcoming! It is funny how my modesty has changed on these things! I am doing the 12 treatments one every 2 weeks? Gloves.. I need!
Wendy0 -
Thank you!Buzzard said:There is a top 10 list......about Chemo treatments that I will..
try and find for you...in general its about right for most Oxy patients......with a little twist to take the sting out...We do try and keep upbeat in here as much as possible.........buzz
thank you Buzz! Would love to see it... So great to be a part of an unusual family here.
Wendy0 -
Thank you!pete43lost_at_sea said:i like my supplements, chinese tea and diet
welcome and sorry you got crc.
the foreplay has finished, all the answers to many questions and what we tried are in the archives.
read the posts, read anticancer, read the liver bible.
pickup what gels with you, i found a great naturopath, she is still helping me.
i also brew chinese herbal medicine, got a great doctor in that area as well.
hugs,
pete
Hi Pete!
Thank you! You are a great resource man .. I have seen from your other posts.
Wendy0 -
Thank you Mike!thxmiker said:Sorry you have to go through
Sorry you have to go through this Wendolyn!
I ended my Folxfox Chemo in April 2011. I liked Lomotil for the diarrhea. Keep moving as much as you can. Some days I could walk miles, some days just around the block. The exercising helped keep me strong. Keep mentally strong by keeping positive people around you.
Stock up on alcohol free baby wipes, nupercanal, and soft toilet paper. Electrolyte replacement drinks and bananas was all I could keep down at times. I also liked ginger. Ginger dried, ginger snaps, ginger tea, ginger ale, etc... I purchased oven gloves from the local Target. These kept my hands away from the cold. Cold would burn me. Cold drinks, ice cream, etc....
Be sure to tell your oncologist about the tingling! This is a side effect, but do not let it get out of control. It is also a warning of the toxicity of chemo. My hands are finally getting better (Still dull feeling and not as sensitive as they were.) but my feet are pretty numb still.
My tastes for things also changed and are slowly changing back. I normally do not eat much sweet and prefer savory. Once chemo started I craved sweet.
Best Always, mike
Thank you Mike! It is so nice to hear from other people... and nice to hear about people who have gone through it and it's over now! YAY! Gives so much hope!
Wendy0 -
nauseaWendolyn said:Thank you Mike!
Thank you Mike! It is so nice to hear from other people... and nice to hear about people who have gone through it and it's over now! YAY! Gives so much hope!
Wendy
My husband is having nausea as well. I got peppermint oil and made him a nasal sniffer. I also put it in a diffuser and pump it in our room at night really helps. (Heritageessentialoils.com ) Also use oils for the hand and feet tingling. We have had success with several oils. He made it to 10 treatments. Hope this info helps you some.0 -
2 years from 2B
Sorry you had the need to find the board, but you'll be glad you did. I'm 2 years from my resection year and half from my 12 folfox treatments. Exercise was tough for me, treatments through the winter left me indoors. It got me out of shoveling snow though. Keep an open communication with your oncologist. They can make adjustments, lengthen your infusion time, add other meds etc. that can help. I had a few blood issues which delayed a treatment or two so my counts could come back up. I got discourage by this at first but it actually was a nice break that my body needed.
I had my port removed last week after my one year post chemo colonoscopy came back clear. I don't need another colonoscopy for 2 years, just CT's. Set some short term goals and you'll be done before you know it.0 -
FOLFOX chemo treatmentSteve Z said:2 years from 2B
Sorry you had the need to find the board, but you'll be glad you did. I'm 2 years from my resection year and half from my 12 folfox treatments. Exercise was tough for me, treatments through the winter left me indoors. It got me out of shoveling snow though. Keep an open communication with your oncologist. They can make adjustments, lengthen your infusion time, add other meds etc. that can help. I had a few blood issues which delayed a treatment or two so my counts could come back up. I got discourage by this at first but it actually was a nice break that my body needed.
I had my port removed last week after my one year post chemo colonoscopy came back clear. I don't need another colonoscopy for 2 years, just CT's. Set some short term goals and you'll be done before you know it.
Hi Wendolyn: I'm actually a visitor to this board as I have gallbladder cancer with seeding to the peritoneum. But the chemo treatment I'm getting is the same as for colon cancer. I got the severe neuropathy right during the first treatment, almost as the oxaliplatin was going into my PICC line - it felt like my face was falling off and my hands were shaking and my pupils were very dilated. I mistakenly took a cold glass of water with pills and my throat seized up as did the nerves around my mouth - what an awful feeling. The first thing I did was have the amount of oxaliplatin reduced by 40% and the infusion rate slowed by half. That really helped! Some people on this board recommended 5grams/day of L-Glutamine powder mixed into juice or milk or some liquid and so I've been doing that daily ever since, plus taking VitB6, Calcium/Magnesium, and Alpha Liloic Acid supplements. All of that together and I haven't had a problem since treatment 2. Whateer works! I drink cold water and eat ice cream!
My cocktail is oxaliplatin/irenotecan/5FU on a pump. The irenotecan and 5FU cause severe diarrhea which isn't pleasant as the 5Fu affects the mucous lining of orifices like the nose, throat, and the diarrhea exit point. For the first I gargle with club soda but am now going to move to a prescription mouthwash as it is getting worse. For the diarrhea, I use baby diaper rash cream, cottonelle wipes, and soft soft toilet paper.
You may get the sweats after awhile (perhaps from the Emend) which means you drip drip drip especially with a change in temperature. something happens to the body's ability to regulate temperature but I think it is also a good way to get rid of the chemo toxins.
For the fatigue, I rest when it comes on and then walk my dog. I also sip a bit of Rock Star energy drink but not much.
For the nausea - well, they give us so many pills to take before, during, after that I haven't had a problem with this.
Your hair may break off in places. I use an overnight hair serum which helps. This is from the oxaliplatin I think.
Hope these suggestions help. Every body reacts differently.
Cheryl0
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