newby with questions
Comments
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Chemo....mommyof2kds said:Welcome, you will find this
Welcome, you will find this board very helpful and full of people who care and provide support. I was diagnosed in feb 08 with stage 3 rectal cancer. I have been through rad/chemo, have had 2 surgeries and now back on chemo. I was getting the same chemo as you, but had an allergic reaction on #6 oxy. Therefore I am not getting it anymore. YOu have already gotten some good advice on what to us for mouth sores. With the regards to the cold sensitivity, my oncologist gave me IV infusions of magnesium and calcium before and after the oxy treatment to help with the side effects. I never did receive any neuropathy issues. I am one of the lucky ones. With the help of being younger and getting the IV infusions-that is why. I was able to enjoy cold drinks about 5 daysd after the the infusion.
One bit of advice, rest rest and rest. If you are tired that means your body needs rest, give in to it. It will help you feel better. I was very tired. It will be a hard road with lots of feelings of uncertainity, but you can do it. We are all doing it and are all helping each other. God Bless. Hang in there.... Petrina
...is far from easy, and it's something very hard to get through, the feelings of uselessness, hospitalizations and blockages I have had all during this has wore me out, and given me some paranoia whenever I feel a slight cramp, I think "oh no, please dont let me backed up" I try to eat things I hope won't get blocked up. This has been the roughest year of my life, and who knows what's more down the road, it's an emotional roller coaster. Some people can sail right through it with no problems, and some can't, depends on the individual, that's for sure!
I wish you luck on your chemo journey, and wish you the best, if I can get through it though, I know you can as well!
Hugsss!
~Donna0 -
ALA and other options
Hi,
You may want to look into taking ALA supplements. (alpha lipoic acid)
I see a dietician with a certification in oncology. (She is one of only about 200 in the US.) I'll be on FOLFOX also as soon as they get things straightened out for me - I had a little set-back with my port and had to have it removed right after insertion. ALA has been found to help a lot with neuropathy for diebetics. There have been limited studies done on chemo patients, and so far it looks promising for chemo patients too.
I will be getting magnesium and calcium via IV before I get the Leucovorin and Oxaliplatin.
Also on the dietician's advice I am doing the following:
►calcium supplements - 1200-1500mg (I'm taking 600 twice per day)
►vitamin D3 - 1000-2000IU/day (right now I'm taking 1000, but will bump to 2000 as the days get shorter and I get less sun)
►ALA - I've been taking 600mg per day right now and will bump up to 1200 the week I start chemo. The suggested amount is 1000-1800mg/day for neuropathy or chemo patients. (This is much higher than recommended for most people, but there are no known adverse affects for taking this much.)
►NO folic acid supplements - I stopped my multi-vitamin because of high folic acid in them. Not recommended for COLON cancer patients. (OK for some other types of cancer.)
Calcium, magnesium, D3 and ALA could help your chemo go easier. Worth trying. Glutamine has also been mentioned as a possible help for nueropathy (and mucositis - which causes the sore mouth).
As for nausea, I will get dexamethasone (a steroid) and Aloxi by IV before chemo also. I have already filled 3 prescriptions for Ativan, Zofran and Kytril. Because I had severe hyperemesis during my pregnancies (especially the last one which required IV outpatient and eventually a hospital stay), we want to be ahead of the game if I have trouble with chemo. We're saving Emend in case the others don't work, due to the cost.
If what you are trying for nausea right now doesn't work, speak up! There are so many different things to try these days that it is worth switching it up.
Other things to try for nausea:
ginger (or combination of protein and ginger)
peppermint
acupuncture
Good luck to you. I hope you find a little relief for a few of the most bothersome side effects.0 -
I have a tendency to holdabmb said:Welcome to this wonderful support group
My husband was diagnosed in April with Stage 3C colon cancer and is receiving the same treatment you are, cold sensitivity, nausea, & fatigue are probably the worse he experiences. His onc did have him on Emend and it is great, but the 2 pills you have to take the 2 following days are pretty expensive so he has opt not to use that med and now he takes Prochlorper 10 mg and piggy backs it with Zofran 8 mg. That helps him, my biggest problem is he tries to hold back on taking the pills sometimes until it is too late! I hound him too much. We do tell his onc everything, he is there to help you, you pay them, which means they work for you. Do wear the gloves, less painful. I just want you to know that I don't know what everyone feels like, but this is a great board to come too. They help, even if you don't like to post, just reading their posts help. God Bless and take care. Margaret
I have a tendency to hold out on pills too. I hate to take anything ever. But I'm going to take my oncologist's and nurse's and dietician's advice and stay AHEAD of the game with the nausea drugs. Once I start vomiting, I can't stop. So I don't want to start that game ever again.
Tell your husband to just TRY it the next cycle - taking the anti-nausea drugs on schedule - and see if it helps.0 -
Hi newby...Im gonna call ya Lady
Lady, To the point with answers as it pertained to me, I did the same cocktail as you are doing now, oxal/leuc/5fu then after I get done with that I will then get to know ya better "Hows That" ? OK hang on here we go.....
Jaw lock....it seemed to start right off the bat, everytime I took a "first bite" of anything it happened, it hurts but I lived through it, kinda like biting a lemon.....ok next...
throat constriction....doesn't take ya long to find out that cold and Oxi doesn't mix, at all, breathing cold air will do the same thing to you. I found that Sunkist Orange, Crangrape, and coffee was the ticket for me. Sunkist just after chemo and my coffee was tolerable after a week of being off chemo, couldn't stand the smell of it for a week though.
Intolerable cold....Doesn't take ya long to check out a piece of ice either, no need to touch it anyway, you can't use it so there ya have it. I never wore gloves except when I first got in my truck in wintertime until the steering wheel warmed up.
Nausea...Dang, that was the worse thing for me. Sick, puked , but I knew that it was working and the body can go through amazing things when the survival instinct kicks in. I tried compazine,Zofran, Ansemet, and Emend, The emend did the best but still wasn't enough to keep me from being very nauseated. I normally didn't eat for the first 2 days then chili or spicy foods were palatible, cottage cheese and peaches at room temp was good. Country style ribs with spicy rib rub were good. I think the spicy stuff overwhelmed the nausea enough to allow me to eat. It wasn't a lot but enough .
I do have a job that allowed me to work the second week when I didn't feel as bad so that was a plus...
As far as how do you get through this...Here is my answer......
You puke when you have to puke, you cry when you have to cry, you rest or lay around when you need to rest and lay around. You go to the chemo clinic everytime your suppose to knowing that this is another trip you won't have to do again. It doesn't matter for 6 months how sick you get or how sick you are. You are fighting a monster and you will win the battle, but its not easy at all...the main thing is...at the end of the battle you can look back and say to yourself," I have taken a path that I would have never thought I could have ever completed, I have conquered the journey and all of its obstacles along the way, I am now a victor in the fight I have fought, I have scars and have suffered numerous setbacks , but I have kicked its tail".....and then sit back and relish the strength that you never knew you had but summoned up for this fight that has rendered you cancer free........and that my Lady, is how we do it.....we love ya and we'll be right here beside ya the whole trip......{{{{{{{{{hugs}}}}}}}} your new tourguide, Clift0 -
Hi!
Welcome to our family! I just started treatment with oxy avastin and xeloda, so far, so good, I do have sensitivity to cold in the hands and some nausea, best word of advise with the nausea is to stay on top of the pills. For the 1st few days take them even if you don't think you need them. And as always listen to your body. I'm not to good at this one! I want to keep going, but it will only make it worse, if you are tired, REST! As, far as mouth sores, I don't have them yes, but my last treatments, a year ago, I did have them and the Magic Mouthwash does work, as for your feet, definately get the Bag Balm, (drug stores) put it on faithfully, it will help with the skin cracking! ANY, questions, we are all here for eachother! Don't hesitate. You are in my prayers!
Karyn0 -
Thank you Kim. What aAnnabelle41415 said:Welcome
I would like to also welcome you to our message boards. You now have become a member of the family. We are here to help you, educate (as much as we can), support you and lift you (and much more). There is probably not a subject that we haven't covered on these message boards.
I was on the same "cocktail" as you and my second treatment it starting hitting me. The cold sensitivity in throat and hands were bad, especially when you forgot about it. I would end up dropping things back onto the racks at the grocery store when I was in the vegetable isle. I also was always cold even though I had this during the summer. The neuropathy can be bad and the more it accumulates in your body the more the hands and feet begin to tingle. I was told by my oncologist to take vitamin B6 and it did help a good bit. I agree with the magic mouth wash. I only had to use it once, but it made a big difference. I actually never got sick but I did take the compazine but it never worked for me because I have an ileostomy and it is coated and it would pass right through. There are many other prescriptions out there to help with that. Also try ginger tea or just eating a little slice of ginger.
Eat whatever you can tolerate as you will probably lose weight because you don't feel like eating, or nothing sounds good, or you just can't get it down, but like suggested, the Ensure (or something) similar helps keep some nutrients in you.
Once again welcome to the board. And come here anytime you want or need an answer. There is usually someone on at all hours. Oh and one more thing, if you are getting steroids before infusion, this will keep you up for two to three days - hence that was why I was answering posts at 3:30 in the morning
Keep us posted as to how you are doing.
Kim
Thank you Kim. What a blessing finding this site has been. Everyone is wonderful. I have been trying to learn more about each of you when you respond to my post. I had to go to work today so I am late getting on. I work 12 hour shifts and my day starts at 5:30 am and finishes hopefully at 6:30 pm. Tonight after work I had a meeting so it put me home at 8:30. I was surprised I was able to do this today considering yesterday I was worn out and having nausea. But I am trying to take the good days and focus on them. Knowing that my next treatment is a week away and I feel pretty good means I am going to get to do some stuff the rest of the week. I remember reading something on one of the post about you Kim, can't remember what it was but I do remember I wanted to get to know you better so thank you for responding to my post.0 -
Thank you so much Ann.earied said:New
Hi Sharon, You can get the Emend from the drug company for free if you meet the criteria. If your clinic or the hospital has a social worker they can help you fill out and send in the paper work or the nurse at the doctor's office. I did receive it for free. I took it for a couple of treatments then I could tolerate it fine. I was on the same chemo you were after I did radiation/chemo. Try oatmeal or bagels, ate a lot of that. The neuropaty/cold with drinking usually stops after 5 days. Then a month after I finished treatment is hit hard in my hands and feet and dealing with that now. For diarrhea take 2 immodium AD when it hits and 1 ever time or every hour after that. Increase your fiber if you can.
Hang in there.
Ann
Thank you so much Ann. Everyone is so kind and helpful.0 -
Margaret thank you for yourabmb said:Welcome to this wonderful support group
My husband was diagnosed in April with Stage 3C colon cancer and is receiving the same treatment you are, cold sensitivity, nausea, & fatigue are probably the worse he experiences. His onc did have him on Emend and it is great, but the 2 pills you have to take the 2 following days are pretty expensive so he has opt not to use that med and now he takes Prochlorper 10 mg and piggy backs it with Zofran 8 mg. That helps him, my biggest problem is he tries to hold back on taking the pills sometimes until it is too late! I hound him too much. We do tell his onc everything, he is there to help you, you pay them, which means they work for you. Do wear the gloves, less painful. I just want you to know that I don't know what everyone feels like, but this is a great board to come too. They help, even if you don't like to post, just reading their posts help. God Bless and take care. Margaret
Margaret thank you for your post. Your husband is so very lucky to have you.0 -
Thanks Patti, I loveittapp said:Hello, I am stage IV and on
Hello, I am stage IV and on Folfox with Avastan, it is the same as you without the avastan. Avastan is for stage IV patients. I did have the Oxy for 6 treatments and will be doing my 9th treatment tomorrow. Anyway it was a little rough doing oxi but it is something you can do. They did cut mine because the neuropothy was lingering into the next treatment.As far as the other is concerned I am doing fine, i am a little fatigued but I am still doing most of what I did before. I only have had two mouth sores and the magic mouthwash cleared it right up quickly. I do have a hard time sleeping so I take ambien everynight. When I did have the oxi I ate things like chicken noodle soup, cottage cheese,yogurt and could not get enough watermelon at room temp. God Bless you, Patti
Thanks Patti, I love watermelon but I reacted violently with it (massive diarrhea) the immodium didn't touch it. Nice meeting you and thank you for your post.0 -
Kathryn, thanks for yourKathryn_in_MN said:ALA and other options
Hi,
You may want to look into taking ALA supplements. (alpha lipoic acid)
I see a dietician with a certification in oncology. (She is one of only about 200 in the US.) I'll be on FOLFOX also as soon as they get things straightened out for me - I had a little set-back with my port and had to have it removed right after insertion. ALA has been found to help a lot with neuropathy for diebetics. There have been limited studies done on chemo patients, and so far it looks promising for chemo patients too.
I will be getting magnesium and calcium via IV before I get the Leucovorin and Oxaliplatin.
Also on the dietician's advice I am doing the following:
►calcium supplements - 1200-1500mg (I'm taking 600 twice per day)
►vitamin D3 - 1000-2000IU/day (right now I'm taking 1000, but will bump to 2000 as the days get shorter and I get less sun)
►ALA - I've been taking 600mg per day right now and will bump up to 1200 the week I start chemo. The suggested amount is 1000-1800mg/day for neuropathy or chemo patients. (This is much higher than recommended for most people, but there are no known adverse affects for taking this much.)
►NO folic acid supplements - I stopped my multi-vitamin because of high folic acid in them. Not recommended for COLON cancer patients. (OK for some other types of cancer.)
Calcium, magnesium, D3 and ALA could help your chemo go easier. Worth trying. Glutamine has also been mentioned as a possible help for nueropathy (and mucositis - which causes the sore mouth).
As for nausea, I will get dexamethasone (a steroid) and Aloxi by IV before chemo also. I have already filled 3 prescriptions for Ativan, Zofran and Kytril. Because I had severe hyperemesis during my pregnancies (especially the last one which required IV outpatient and eventually a hospital stay), we want to be ahead of the game if I have trouble with chemo. We're saving Emend in case the others don't work, due to the cost.
If what you are trying for nausea right now doesn't work, speak up! There are so many different things to try these days that it is worth switching it up.
Other things to try for nausea:
ginger (or combination of protein and ginger)
peppermint
acupuncture
Good luck to you. I hope you find a little relief for a few of the most bothersome side effects.
Kathryn, thanks for your post. I will be traveling to Amarillo in the morning and I plan to go to the health food store to purchase some of these vitamins I am reading about. Nice to meet you.0 -
Hi Gail, thank you for yourtootsie1 said:Hi
Welcome to the Board. It's full of great people who will help you through this experience.
I was diagnosed Stage 1, so I don't have answers for you, but I do want to welcome you and say I look forward to hearing more about you.
*hugs*
Gail
Hi Gail, thank you for your response. Nice to meet you.0 -
What do I call you? Velo?velo8162 said:Mouth Sores
Go for the lidicane GI cocktail, it does help!
What do I call you? Velo? Thanks I will get some my next treatment.0 -
Clift, you really broke itBuzzard said:Hi newby...Im gonna call ya Lady
Lady, To the point with answers as it pertained to me, I did the same cocktail as you are doing now, oxal/leuc/5fu then after I get done with that I will then get to know ya better "Hows That" ? OK hang on here we go.....
Jaw lock....it seemed to start right off the bat, everytime I took a "first bite" of anything it happened, it hurts but I lived through it, kinda like biting a lemon.....ok next...
throat constriction....doesn't take ya long to find out that cold and Oxi doesn't mix, at all, breathing cold air will do the same thing to you. I found that Sunkist Orange, Crangrape, and coffee was the ticket for me. Sunkist just after chemo and my coffee was tolerable after a week of being off chemo, couldn't stand the smell of it for a week though.
Intolerable cold....Doesn't take ya long to check out a piece of ice either, no need to touch it anyway, you can't use it so there ya have it. I never wore gloves except when I first got in my truck in wintertime until the steering wheel warmed up.
Nausea...Dang, that was the worse thing for me. Sick, puked , but I knew that it was working and the body can go through amazing things when the survival instinct kicks in. I tried compazine,Zofran, Ansemet, and Emend, The emend did the best but still wasn't enough to keep me from being very nauseated. I normally didn't eat for the first 2 days then chili or spicy foods were palatible, cottage cheese and peaches at room temp was good. Country style ribs with spicy rib rub were good. I think the spicy stuff overwhelmed the nausea enough to allow me to eat. It wasn't a lot but enough .
I do have a job that allowed me to work the second week when I didn't feel as bad so that was a plus...
As far as how do you get through this...Here is my answer......
You puke when you have to puke, you cry when you have to cry, you rest or lay around when you need to rest and lay around. You go to the chemo clinic everytime your suppose to knowing that this is another trip you won't have to do again. It doesn't matter for 6 months how sick you get or how sick you are. You are fighting a monster and you will win the battle, but its not easy at all...the main thing is...at the end of the battle you can look back and say to yourself," I have taken a path that I would have never thought I could have ever completed, I have conquered the journey and all of its obstacles along the way, I am now a victor in the fight I have fought, I have scars and have suffered numerous setbacks , but I have kicked its tail".....and then sit back and relish the strength that you never knew you had but summoned up for this fight that has rendered you cancer free........and that my Lady, is how we do it.....we love ya and we'll be right here beside ya the whole trip......{{{{{{{{{hugs}}}}}}}} your new tourguide, Clift
Clift, you really broke it down. Your post was very inspirational, to the point, cut and dried and very informative thank you so much. Thank you for the hugs. This is awesome to have so many people out there who care about someone elses dis-ease and is willing to take the time to share. How blessed we are. Nice meeting you.0 -
Hi Karyn, plan to get thebutterfly23 said:Hi!
Welcome to our family! I just started treatment with oxy avastin and xeloda, so far, so good, I do have sensitivity to cold in the hands and some nausea, best word of advise with the nausea is to stay on top of the pills. For the 1st few days take them even if you don't think you need them. And as always listen to your body. I'm not to good at this one! I want to keep going, but it will only make it worse, if you are tired, REST! As, far as mouth sores, I don't have them yes, but my last treatments, a year ago, I did have them and the Magic Mouthwash does work, as for your feet, definately get the Bag Balm, (drug stores) put it on faithfully, it will help with the skin cracking! ANY, questions, we are all here for eachother! Don't hesitate. You are in my prayers!
Karyn
Hi Karyn, plan to get the bag balm tomorrow. Thanks for your post and it is great to meet you.0 -
Sharon,nmlandlady said:Hi Karyn, plan to get the
Hi Karyn, plan to get the bag balm tomorrow. Thanks for your post and it is great to meet you.
I am also on FOLFOX.
Sharon,
I am also on FOLFOX. You have been given good advice. The nausea is what kicks my butt. So far the meds haven't worked, but I am able to go to work most days. I will be doing Decadron and Ativan the day before Chemo and then for 3 days. Hopefully it will help. As others have said, tell your Onc & chemo nurses everything. That way you stand the best chances of minimal side effects. So far the neuropthy is tolerable for me, but I'm always cold now, so I just put on an extra layer. Also if the chemo gets to be to much, apply for disability and use the family medical leave act. Your employer has to hold your job for you under it. I to want to work as much as possible, but when the time comes, I will do it if needed. Just rest as much as possible and learn to slow down and let others help you with the day to day stuff at home.
Don0 -
Thanks Don. Nice to meetcoolvdub said:Sharon,
I am also on FOLFOX.
Sharon,
I am also on FOLFOX. You have been given good advice. The nausea is what kicks my butt. So far the meds haven't worked, but I am able to go to work most days. I will be doing Decadron and Ativan the day before Chemo and then for 3 days. Hopefully it will help. As others have said, tell your Onc & chemo nurses everything. That way you stand the best chances of minimal side effects. So far the neuropthy is tolerable for me, but I'm always cold now, so I just put on an extra layer. Also if the chemo gets to be to much, apply for disability and use the family medical leave act. Your employer has to hold your job for you under it. I to want to work as much as possible, but when the time comes, I will do it if needed. Just rest as much as possible and learn to slow down and let others help you with the day to day stuff at home.
Don
Thanks Don. Nice to meet you. FMLA/LTD is not an option for me right now. 2009 has not been good to me. It started out with a broken leg snow skiing. I had had surgery the summer before so with that and my time off with my leg I depleted my 12 months. Since it is a rolling calendar I recently acquired 4 wks which I will use intermittent so the absence won't count as an occurrence. LTD would not kick in until I used all the STD then I have to wait 12 wks. By that time I will be on the oral 5FU and off the oxi-so why bother. I just need to hang in there so I don't loose my job. I couldn't afford the cobra insurance if I don't. Thanks again.
Sharon0 -
Vitamins and Supplementsnmlandlady said:Thanks Don. Nice to meet
Thanks Don. Nice to meet you. FMLA/LTD is not an option for me right now. 2009 has not been good to me. It started out with a broken leg snow skiing. I had had surgery the summer before so with that and my time off with my leg I depleted my 12 months. Since it is a rolling calendar I recently acquired 4 wks which I will use intermittent so the absence won't count as an occurrence. LTD would not kick in until I used all the STD then I have to wait 12 wks. By that time I will be on the oral 5FU and off the oxi-so why bother. I just need to hang in there so I don't loose my job. I couldn't afford the cobra insurance if I don't. Thanks again.
Sharon
Not sure if this was mentioned, but do not take anything without clearing it with your oncologist first. Some doctors don't want you to even take an aspirin or some types of vitamins as they can interfere with the absorption or have a counter reaction with over the counter products. Better to ask before hand instead of wasting that yucky stuff going in your vein
And I went my whole cycle without diminishing my chemo at all - I wanted to, but doctor wouldn't so mine was doable. Others tolerate drugs at different levels, but the anti nausea pills really do work and will keep you feeling better.
Kim0
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