Hello - I'm new

daydreamer110761
daydreamer110761 Member Posts: 487 Member
edited March 2014 in Colorectal Cancer #1
I just wanted to introduce myself and say hello. My name is Sherrie, I've been hanging around here since December, reading the boards, searching for info. Sad to hear so many stories out there, glad to hear that all chemo isn't that bad. It's inspiring to hear so many stories of cancer free. I just finished my third round with the FOLFOX. Each gets a little harder, each is different, and I don't like any of them. it's especially hard living here in Minnesota, today is 18 below zero, and it hurts to even let the dog out. I don't have any real friends here that I hang out with, just my fiance, who has been a God-send through all of this.

Unlike most of what I have read here, I woke up very ill on November 5th, and by November 7th was in surgery - so for my birthday I donated 12 inches of my colon to science I guess. So much for the carrot cake I wanted! I guess I am a stage III - something or other. I didn't listen much, couldn't hear much past the "C" word. Still not sure that I want to know. They got it all, and I have 12 rounds of chemo to do. I apparently had been having problems for quite awhile. About a year before I was to go for a colonoscopy (having problems and high risk), but I couldn't keep the gallon jug of soapy dishwater down, so I just didn't go. Dumb. And no one mentioned that you can mix it with something other than water. So, I carried, on, gassy as ever for a year. Kept gaining weight, but only in my belly - I read all sort of things, but everything mentioned weight loss, not gain. I wasn't eating any more, but just kept buying bigger pants and exercising more. then in October I was in pain, hadn't gone to the bathroom in 3-4 days which is odd for me since i was running 3-5 times a day before. Doc said to go try a laxitive, along with a few other things. didn't work. 2 more days, I was in pain, went to the ER it was so bad. They did an xray and came up with nothing. Gave me stuff to drink and sent me home. The next morning I woke up tossing my cookies, although there were non to toss, by this time I couldn't eat either. Fortunately, my boss is also my fiance. When I didn't show for work, he kept calling, I couldn't even pick up the phone. By the time he got to me I was in a cold sweat, curled up on the bathroom floor, and in so much pain I couldn't speak. Once he got me to the hospital, I couldn't talk until the Morphine took over, and most of you know how well that goes....

The rest of the story is the usual - a million uncomfortable tests to figure it out, once they did and pathology came back with the report, well, I haven't been the same since. 10 days in the hospital was the pits, especially since about 6-7 of them I had tubes coming out of every orifice!

The doc asked me after the first round how I felt, at that time I had only experienced the cold hands and feet, and not to a bad degree. He told me that that would be about the extent of it. The second round was about as uneventful. For both of them, I go sit on Tuesday, they do about a 3-4 hour with the Leuk and OX, then hook me up to "my buddy" and send me home until thursday morning. This last time, instead of going to the cancer center, I wanted to try the original hospital I was in since it is closer. They did nothing the same. The pre-meds were a drip instead of a syringe. They originally hooked the first bag, I guess they were doing it one at a time, which would have been longer, until my fiance mentioned the cancer center doing both together - they checked with the pharmacy and found out they could - wouldn' experienced people know this? Then while home, the IV tubing came apart - I freaked, blood coming out of my chest is not what I wanted to see - they didn't tape it, and also had the pump inside the bag all wrong. I won't be going back to that place even if it is more convenient. This time around, I have the sores in my mouth, my eyes started doing wierd things outside. Food is started to taste like cardboard, cold hurts even worse (and I've been off since Thursday). I feel like I have chemo brain - keep forgeting what I was saying in the middle of a sentence - i even forgot my phone number today.

Sorry - just wanted to introduce myself and ended up spouting......
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Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    welcome, brave soul
    Sounds like you have been having a very hard time of it, and I wanted to say how sorry I am for that. This beast just sucks all around! I take it the increasing abdominal size was due to fluid? I had the same when my recurrence involved a very large tumor on my right ovary. I looked 10 months pregnant and didn't realize I was losing so much weight until i got home from the hospital after the surgery; my kids had a hard time looking at me when they helped me bathe. No fear, I have managed to put it all and some back on. In fact, I now have to go on a low fat diet cause my triglycerides and LDL are too high. We are increasing my thyroid replacement hormone as well, so maybe I WILL be able to get some of this extra weight off! :) Anyhow, I am praying for some good days for you. Sounds like that hospital really doesn't have enough experience with the chemo and you are right to go back to where you were going; the tubing disconnected and you were bleeding out?!!!! ACCKCKCKCKKCK! Did you wind up just yanking the needle? Do you have a port? Just as a small note, when i am doing chemo I get the premeds in IV rather than an injection as well. The premeds used to take about 30 minutes. The longest was getting the CPT-11; they put it in slow initially to decrease adverse reactions. Even the Avastin I go in for every 3 weeks now used to take 45 min to 1 hour and now it goes in less than 30 minutes. Anyhow, welcome to the boards and I hope to see you on more often! Keep us posted and may God bless you.
    mary
  • daydreamer110761
    daydreamer110761 Member Posts: 487 Member
    msccolon said:

    welcome, brave soul
    Sounds like you have been having a very hard time of it, and I wanted to say how sorry I am for that. This beast just sucks all around! I take it the increasing abdominal size was due to fluid? I had the same when my recurrence involved a very large tumor on my right ovary. I looked 10 months pregnant and didn't realize I was losing so much weight until i got home from the hospital after the surgery; my kids had a hard time looking at me when they helped me bathe. No fear, I have managed to put it all and some back on. In fact, I now have to go on a low fat diet cause my triglycerides and LDL are too high. We are increasing my thyroid replacement hormone as well, so maybe I WILL be able to get some of this extra weight off! :) Anyhow, I am praying for some good days for you. Sounds like that hospital really doesn't have enough experience with the chemo and you are right to go back to where you were going; the tubing disconnected and you were bleeding out?!!!! ACCKCKCKCKKCK! Did you wind up just yanking the needle? Do you have a port? Just as a small note, when i am doing chemo I get the premeds in IV rather than an injection as well. The premeds used to take about 30 minutes. The longest was getting the CPT-11; they put it in slow initially to decrease adverse reactions. Even the Avastin I go in for every 3 weeks now used to take 45 min to 1 hour and now it goes in less than 30 minutes. Anyhow, welcome to the boards and I hope to see you on more often! Keep us posted and may God bless you.
    mary

    thanx
    And yes - it was the abdomen swelling from fluids, after the surgery i was surprised to find that I had indeed lost 30 lbs! which all in all was a good thing. I also had the nurses saying "so you are diabetic?" and my answer was not that I know of. Needless to say, I have also learned to stick myself everyday, not on meds for that yet, just watching until this chemo is over. Yes, I have the port - I hate it, but i guess its better than the alternative. To me it feels like a giant bruise on my chest, and depending on how I lay it's uncomfortable at night. I am fortunate that my fiance was an EMT in the air force (for the beginning, then he was air traffic control), and has a level head - I scream, he ran, and shut it off, but gosh i can laugh now, but it's sort of scary when you don't expect it. I would make a terrible nurse.

    I guess it helps a little to talk to people who are going through the same thing, but I just don't want to go to a support group and sit around talking, besides, it's too cold to go outside even for a second!
  • JMARIE66
    JMARIE66 Member Posts: 55
    welcome??
    Hard to welcome someone to a site like this. Noone wants to be here. My husband was diagnosed stage 3b 11-30-07. He too had surgery, and endured Chemo~Folfox. Let your doctor know about the mouth sores, they have a mouth wash for that and it helps. Every treatment for my husband seemed to bring on a new side effect, but staying ahead of them, taking the medicine or options to lessen the side effects helped. Yes, it sounds like you should go back to the Cancer center and stay away from the hospital. I cannot even imagine the panic you went through! My husband did work throughout his treatment. I honestly think it helped him pass time and not dwell on what he had to endure. We tried to keep life as "normal" as possible~going to a movie or playing cards with friends. He finished his treatments (12/6 mths) in July 08. His cancer was totally removed like you~that is great!! and Chemo was mopping up anything left behind. He had his CT scan and colonoscopy and is all clean. I hope your next treatment goes better and you can cope with the side effect. I wish you all my best.
    JMarie
  • krystiesq
    krystiesq Member Posts: 240 Member
    welcome
    Another brave soul to add to my prayer list. I know with oxaliplatin, it is hard to eat the cold stuff. However, at my mom's treatment center, to avoid the mouth sores the patients finish thier treatment with a popsicle. She also had mouth sores and got some "magic mouthwash" to use. It helped tremendously.

    Good luck with your treatments.
  • daydreamer110761
    daydreamer110761 Member Posts: 487 Member
    krystiesq said:

    welcome
    Another brave soul to add to my prayer list. I know with oxaliplatin, it is hard to eat the cold stuff. However, at my mom's treatment center, to avoid the mouth sores the patients finish thier treatment with a popsicle. She also had mouth sores and got some "magic mouthwash" to use. It helped tremendously.

    Good luck with your treatments.

    I bought orajel which helped
    I bought orajel which helped for now, but i expect them to get worse. A friend of mine, a pharmacist, suggested mixing parts of maalox and liquid benadryl. Plan to have that on hand next time around. can't imagine a popsickle, was imagining how good sherbet would feel tho.
  • VickiCO
    VickiCO Member Posts: 917

    I bought orajel which helped
    I bought orajel which helped for now, but i expect them to get worse. A friend of mine, a pharmacist, suggested mixing parts of maalox and liquid benadryl. Plan to have that on hand next time around. can't imagine a popsickle, was imagining how good sherbet would feel tho.

    Magic Mouthwash
    Ask for a prescription. This stuff really works. I had terrible mouth sores, and my lips were a mess as well. I used this faithfully, and I rinsed constantly with warm water/salt/baking soda and the sores just went away. As soon as I stopped the mouthwash, they tried to come back. It really is magic....

    Vicki
  • daydreamer110761
    daydreamer110761 Member Posts: 487 Member

    thanx
    And yes - it was the abdomen swelling from fluids, after the surgery i was surprised to find that I had indeed lost 30 lbs! which all in all was a good thing. I also had the nurses saying "so you are diabetic?" and my answer was not that I know of. Needless to say, I have also learned to stick myself everyday, not on meds for that yet, just watching until this chemo is over. Yes, I have the port - I hate it, but i guess its better than the alternative. To me it feels like a giant bruise on my chest, and depending on how I lay it's uncomfortable at night. I am fortunate that my fiance was an EMT in the air force (for the beginning, then he was air traffic control), and has a level head - I scream, he ran, and shut it off, but gosh i can laugh now, but it's sort of scary when you don't expect it. I would make a terrible nurse.

    I guess it helps a little to talk to people who are going through the same thing, but I just don't want to go to a support group and sit around talking, besides, it's too cold to go outside even for a second!

    I have to admit
    that before all of this, I smoked, and drank, and spent many years as a partier. Oh, I eat fairly healthy, and exercise. This should have been a wake up call. however, I spent from November 5th until December agonizing over having to change every single thing about me. My whole personality is going to change. I even talked to the chaplain at the hospital for the first time in years. Once the chemo started I thought even more. Maybe too much. I got to the point where I was eating low carb stuff, mostly tasted like sawdust, can't drink anything cold, already gave up jack and coke and went to wine (doc knows) which i don't really like. I broke down about mid-december and smoked again. I am not going back to my pack a day habit, but I have to admit, that the one or two I have allowed myself feel really good. I wanted to refuse the chemo, I really did. But, when the plug comes out on thursday, I usually crash for the rest of the day, and then on Friday, we head out to the casino, where I drink a few, listen to a good band (usually), gamble a bit and smoke. I know I shouldn't, but it's a really wierd release for me, or at least being partially normal. I am still working, although half days since I find that I can't seem to make it passed 1pm without wanting a nap. I hate feeling like this, I am usually working 8-10 hour days, and normally 6-7 days a week, then i managed to come home, cook, clean, walk, drink a few with Nick, and do it all again the next day. I was definately not ready to give that up. My kids are grown, Nick and I have only been together for 3½ years and the kids finally are all out and life was getting good. So, I am fairly good most of the time, but 1 day each week I let it all go.

    I'm whining again, I know. But just how do you give up everything you were? There are other changes too that I hate, and I'd actually like to talk to someone about, but Nick goes on every doctor appointment with me because I don't seem to hear everything that is said. I just hate this, and what everyone says is true - I'm angry - at myself, I cry when I am alone and try to be strong when I'm not, which is most of the time. I can't imagine having my kids here to watch this, even contemplated not telling them, as the only experience they have had with cancer passed away this past august (he was 12 and had been fighting for most of his short life). I am understanding what the surviving means, not necessarily the cancer, but the treatments! It messes with the head. thanx for letting me whine here.
  • pamness
    pamness Member Posts: 524 Member
    Welcome to this site - where no one wants to be
    Cancer treatment is very hard. I had surgery, folfox and then radiation with 5FU. The folfox was hard for me (and many others), I didn't finish all 8 rounds - I did 5 and then 3 with just the leucovorin and 5FU.

    I understand not wanting your whole life to be about having cancer. There are some things you have to change and some you don't. I think the trick is finding what works for you. Once you get through treatment, you can think about what you want and don't want.

    Chemo brain is an interesting thing. I certainly noticed it.

    Stay away from your local hospital, cancer centers are there for a reason.

    I wish you well.

    Pam
  • daydreamer110761
    daydreamer110761 Member Posts: 487 Member
    pamness said:

    Welcome to this site - where no one wants to be
    Cancer treatment is very hard. I had surgery, folfox and then radiation with 5FU. The folfox was hard for me (and many others), I didn't finish all 8 rounds - I did 5 and then 3 with just the leucovorin and 5FU.

    I understand not wanting your whole life to be about having cancer. There are some things you have to change and some you don't. I think the trick is finding what works for you. Once you get through treatment, you can think about what you want and don't want.

    Chemo brain is an interesting thing. I certainly noticed it.

    Stay away from your local hospital, cancer centers are there for a reason.

    I wish you well.

    Pam

    thank you everyone
    I can't imagine radiation added to this, thank God they got what they got and no radiation needed. I know there are thousands out there worse off and God bless all of you/them. I don't understand what the different things are, but if the doc says 12 treatments, how can they just decide to take a person off? Don't they prescribe a certain amount of treatments for a reason?

    I don't know what the hardest part really is - the miserable hours spent sitting there hooked up, carrying the fanny pack around for 46 hours (it wasn't much of a fashin statement in the 80's, and does nothing for an already big bootie), the side effects, or the cat trying to play with the IV when I am sleeping!

    I'll tell you what really stinks tho - having great seats for a Wild game (although I am a Flyers fan stuck in Minnesota), and not being able to go because you can't stand the cold!

    I wish everyone well, and thanx for reading my rambling.
  • Mike49
    Mike49 Member Posts: 261
    Benedry and Maalox will work until you get the magic wash
    I used the mixture and was amazed at how much it helps, the magic wash has an actual anesthetic in it too. Good luck, I had surgery just a month before you and go in tomorrow for round 4. I am not looking forward to it, but I am looking forward to finishing round 12. I drink wine, until I can tolerate beer. Go ahead and live your life, try to take care of yourself, but keeping things normal will help your mind. I asked my oncologist about alcohol and chemo and he said moderation but go ahead and live your life. We'll kick this thing. Follow me and the rest of this group.

    Mike
  • This comment has been removed by the Moderator
  • MoonDragon
    MoonDragon Member Posts: 183
    Welcome!
    Welcome to our family, Sherrie! I don't have any words of wisdom that are any different from anyone else's but I will say you've come to the right place. I've never found a better place for support and you couldn't ask for a better group of survivors!
    Cancer did change my life dramatically as I lost everything, my home, my kids, my vehicles, my pets and all my belongings due to the financial hardship from being unable to work. I"m just now forging ahead and getting on my feet. My biggest piece of advice is to be patient with yourself. None of these changes are comfortable but we come out on the otherside having made the adjustments that need to be made. Make your life as comfortable and easy for yourself as possible and when you're feeling down in the dumps, be patient and love yourself.
    I'm sorry you're here for the reasons you are, but it's good to meet you!

    Jorie
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Hello
    Spout away, dear! Let it all out here, and I think you'll be better for it. I'm glad you found our group, and you'll be added to the prayer list of all the praying ones here.

    *hugs*
    Gail
  • trainer
    trainer Member Posts: 241
    Welcome to the Semicolon Club!
    You are very gifted in telling your story. Thanks for sharing it. And I'm sorry you had to go through all that. I hate it that you are now a member of the Semicolon Club, as it's the club no one wants to be a member of!

    BTW, you weren't spouting, you were sharing your story with a whole lot of new friends.
    Mike
  • trainer
    trainer Member Posts: 241
    Welcome to the Semicolon Club!
    You are very gifted in telling your story. Thanks for sharing it. And I'm sorry you had to go through all that. I hate it that you are now a member of the Semicolon Club, as it's the club no one wants to be a member of!

    BTW, you weren't spouting, you were sharing your story with a whole lot of new friends.
    Mike
  • daydreamer110761
    daydreamer110761 Member Posts: 487 Member
    trainer said:

    Welcome to the Semicolon Club!
    You are very gifted in telling your story. Thanks for sharing it. And I'm sorry you had to go through all that. I hate it that you are now a member of the Semicolon Club, as it's the club no one wants to be a member of!

    BTW, you weren't spouting, you were sharing your story with a whole lot of new friends.
    Mike

    Has anyone had it effect their eyes?
    That's a question I have. i went outside this time around and it seemed like my eyes froze up, I couldn't see for a few seconds, which was bad since I was at work, and helping a tow truck driver.

    I asked the doctor about drinking and chemo also, since although I am not a "heavy drinker" I did like to have my evening cocktails, which I said consisted of Jack and coke (which I am sure contributed to the diabetes part). He said that as long as I didn't do it while on chemo, that wine in moderation was ok, which lead me to searching for a wine I like - I like white, he says red. I had actually quit smoking having been in the hospital 10 days, and when I got out noticed how bad it smelled. That didn't stop me from wanting one tho and I picked one back up around Christmas time. Not smoking like I used to since I won't go outside.

    I've also read alot of the hints on here about food, and found that I suddenly love salsa, and pepper on everything. I hate coffee now, it just tastes funky, but I miss my morning cup, have switched to tea and hot chocolate.

    Yes I am spouting. This isn't fair to anyone, not me, you guys, and especially not to the people who have to put up with us! Nick is only trying to help, and I yell at him all the time - I believe it is a mixture of chemo and hormones! He's been a life saver on more than one occasion. I'll tell you - the ones that put up with us are God sends to not just walk out, and he puts up with me both at work and at home, lucky him. Have a good day guys - off to brave the cold and go to work.
  • claud1951
    claud1951 Member Posts: 424 Member

    Has anyone had it effect their eyes?
    That's a question I have. i went outside this time around and it seemed like my eyes froze up, I couldn't see for a few seconds, which was bad since I was at work, and helping a tow truck driver.

    I asked the doctor about drinking and chemo also, since although I am not a "heavy drinker" I did like to have my evening cocktails, which I said consisted of Jack and coke (which I am sure contributed to the diabetes part). He said that as long as I didn't do it while on chemo, that wine in moderation was ok, which lead me to searching for a wine I like - I like white, he says red. I had actually quit smoking having been in the hospital 10 days, and when I got out noticed how bad it smelled. That didn't stop me from wanting one tho and I picked one back up around Christmas time. Not smoking like I used to since I won't go outside.

    I've also read alot of the hints on here about food, and found that I suddenly love salsa, and pepper on everything. I hate coffee now, it just tastes funky, but I miss my morning cup, have switched to tea and hot chocolate.

    Yes I am spouting. This isn't fair to anyone, not me, you guys, and especially not to the people who have to put up with us! Nick is only trying to help, and I yell at him all the time - I believe it is a mixture of chemo and hormones! He's been a life saver on more than one occasion. I'll tell you - the ones that put up with us are God sends to not just walk out, and he puts up with me both at work and at home, lucky him. Have a good day guys - off to brave the cold and go to work.

    Side Effects
    Yes...I had some effects with my eyes. Actually, it hurt to cry. For that second that the tear came out, it stung. I also had what I called "flavor bursts" with food. The second I put food in my mouth, it was like the back part of my taste buds just bursted with saliva and that hurt for a second or two.

    I was one that had all kinds of side effects from the Oxal. Muscle spasms in my legs, hands and even mouth. My mouth would stay in the "smile" postition when I brushed my teeth. My hand would stay in that cupped postion when I used the mouse with the computer. Wierd feeling.

    You will be going through all kinds of wierd things for a while. When something new came up I just said "it's the chemo" and went on. Do tell your Onc nurses and Doctors about your side effects.

    I too, was Stage 3 with 12 inches removed from my ascending colon. 4 rounds of Oxal & Xeloda then I had to stop taking that and go with Camptasar and 5 FU pump. (6 months all together) BUT guess what? I am now 2 years out and still NED (nO evidence of disease).

    Just keep a good attitude. Try to have someone go with you when you go to the Doctor. 4 ears are better than 2! Write all your question down. That helps so much. And...drink water, water, water! Even though it might not taste good, you need to get that stuff out.

    Keep your energy for moving forward and to fight that beast!

    Welcome to CSN. Keep writing.

    Claudia
  • msccolon
    msccolon Member Posts: 1,917 Member

    I have to admit
    that before all of this, I smoked, and drank, and spent many years as a partier. Oh, I eat fairly healthy, and exercise. This should have been a wake up call. however, I spent from November 5th until December agonizing over having to change every single thing about me. My whole personality is going to change. I even talked to the chaplain at the hospital for the first time in years. Once the chemo started I thought even more. Maybe too much. I got to the point where I was eating low carb stuff, mostly tasted like sawdust, can't drink anything cold, already gave up jack and coke and went to wine (doc knows) which i don't really like. I broke down about mid-december and smoked again. I am not going back to my pack a day habit, but I have to admit, that the one or two I have allowed myself feel really good. I wanted to refuse the chemo, I really did. But, when the plug comes out on thursday, I usually crash for the rest of the day, and then on Friday, we head out to the casino, where I drink a few, listen to a good band (usually), gamble a bit and smoke. I know I shouldn't, but it's a really wierd release for me, or at least being partially normal. I am still working, although half days since I find that I can't seem to make it passed 1pm without wanting a nap. I hate feeling like this, I am usually working 8-10 hour days, and normally 6-7 days a week, then i managed to come home, cook, clean, walk, drink a few with Nick, and do it all again the next day. I was definately not ready to give that up. My kids are grown, Nick and I have only been together for 3½ years and the kids finally are all out and life was getting good. So, I am fairly good most of the time, but 1 day each week I let it all go.

    I'm whining again, I know. But just how do you give up everything you were? There are other changes too that I hate, and I'd actually like to talk to someone about, but Nick goes on every doctor appointment with me because I don't seem to hear everything that is said. I just hate this, and what everyone says is true - I'm angry - at myself, I cry when I am alone and try to be strong when I'm not, which is most of the time. I can't imagine having my kids here to watch this, even contemplated not telling them, as the only experience they have had with cancer passed away this past august (he was 12 and had been fighting for most of his short life). I am understanding what the surviving means, not necessarily the cancer, but the treatments! It messes with the head. thanx for letting me whine here.

    Need someone to talk to about some things
    Make an appointment and go yourself if it's things you can't talk about around Nick. If it's side effects or other things you need to discuss with the onc, just tell Nick you have to do this one on your own (I would even tell my family that it was just going to be a quick appt and I had some other errands to do as well, so they wouldn't try to come with). If it's other emotional issues, ask your onc for a referral to a good counselor with experience with cancer survivors and make the appointment soon! You as the survivor have issues that need to be addressed and the sooner the better! Stop trying to be so tough and reach out for the help you need. There are things you will learn and things you will experience that we ALL wish we had never had to be confronted with. After a while, it does get easier, although you will still find yourself looking back and shaking your head. It really is true what they say (and who is they anyhow? :) ) that which doesn't kill you makes you stronger. Don't try to hide everything; it tends to contribute to the whole illness and makes it harder to heal. Be kind to yourself; let yourself take time for YOU! Nap when your body tells you it needs a rest.
    mary
  • lisa42
    lisa42 Member Posts: 3,625 Member
    HI Sherrie,
    I'm sorry you've

    HI Sherrie,
    I'm sorry you've had such a hard time! I live in California and had a hard time going outside w/ my dogs on winter mornings (I live in a valley where we do actually have low 30's and upper 20's some winter mornings, but I know that's nothing compared to your MN temps!)- I can't imagine the pain of being in Minnesota cold while on oxaliplatin. I definitely feel for you.
    Well, I guess the only way to look at all this in a positive light is to look at all you've already been through and think, hope, and pray that it's going to get better from here. Yes, you've still got to endure several more chemo treatments and deal with the lousy cold oversensitivity from the oxaliplatin, BUT remember WHY you're taking it. Hard to do sometimes, trust me I know- I'm taking chemo for the second time after a recurrence this past August. Actually, what I'm on now is MUCH easier for me to tolerate than the Folfox regime that you're on now. Chemo brain is, unfortunately, part of it for many of us- I guess not everyone gets it, but I sure did. I'm a teacher and it was awful to not even be able to help my young kids with their homework because I couldn't think enough to do simple math and I kept forgetting words and just felt generally stupid! It did get better, which is the good news- you'll come out of your brain fog! I'm a little foggy on the stuff I'm on now, but not nearly as bad as before. By the way, I was diagnosed a year and a half ago as a stage IV (in liver and lungs), but I'm actually doing really, really well compared to where I was then. After this long, it does still seem lousy, but I feel more "normal" now and just want to try to feel like a normal person "who just happens to have cancer". I pray and talk to God a lot- I couldn't get through it without that.
    I'll be thinking of you and saying a prayer for you-
    take care & God bless,
    Lisa
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Another thing
    Hi again,
    I forgot to comment on eyes. I also experienced some changes in my vision while on Folfox chemo. The main problem with my eyes, though, was they were very dry all the time. I'd wake up in the middle of the night and they were so dry that they really hurt. I even developed a red lesion on the white of both eyes. I went to the opthamologist about it and they said it's a normal condition in "older" people (thanks, I'm only 42) & that I probably developed this at a younger age because of the effects of the chemotherapy. Also, having my eyes be so dry made it worse. So, I keep "natural tears" eyedrops with me at all times now. I often have to put drops in my eyes right away after waking up- sometimes before even using the bathroom! Keep the eyes moist to protect them from any possible more ill effects.
    For the mouth sores, I found that there's a certain mouthwash that works really well (darn it- my chemo brain just forgot what it's called!) I think it starts with a B. Get one that gives moisture to the mouth- nothing too strong. There's a gel of the same brand that works well to put on any mouth ulcers also. You may find that your hands and soles of your feet start peeling and your skin gets really dry. Try Aveeno lotion- it worked well for me. The peeling will stop after you're all done w/ the 5-FU. I got soreness and blisters for a few days each time. I don't know what to recommend for that- just take it easy and it went away each time after a few days (but I always knew to expect it again about 3-4 days after a treatment).
    Best wishes to you,
    Lisa