New To Site w/Questions about hands, feet, port, eyes, fatigue, and so forth:

Npcoleman4
Npcoleman4 Member Posts: 8
edited March 2014 in Colorectal Cancer #1
Hello. I am new to this site and needed opinions from others taking chemo treaments. I was diagnosed w/stage 3 colon cancer. I get chemo every other Monday and I just had finished my 3rd treatment out of 12. I have been having some strange side effects. My hands have turned black inside; they are swollen; numb; and hurt to touch. My feet are black at the bottom and swollen and hurt to stand on. I can't walk on them for 3 days after chemo treatments. My eyes are dripping with some kind of sticky fluid. The taste and smell of food is gone; my lips are dry; my throat is dry; my nose is dry; my mouth is cracked on both sides. I am fatigued, tired, and am nausiated when trying to eat. Has anyone had these side effects? If so, please, please, please give me some advice! Also, do you feel or see the tube/cath port rise up under your skin when you move or does this mean it came loose or have a leak? Again please respond.

Comments

  • lcarper2
    lcarper2 Member Posts: 635 Member
    #2
    npcoleman4
    you need to call your doctor and tell him of the side effects you are having they can change some things or reduce the dose but they need to know you are having these problems have they seen your hands and feet when you go in for visits ? If not show them the next time you go food will not taste good on chemo yogart is good to eat it will take the metal taste out of your mouth. The port needs to be looked at also I had one but not anymore mine never moved so I can't help you with that.
  • geotina
    geotina Member Posts: 2,111 Member
    #3
    Nicoleman4
    What chemo drugs are you getting?

    My husband is Stage IV and to be honest, did not experience the type of reactions you are getting. He was very fatigued, had a metal taste and cold sensation but did not experience the rest of it.

    Never had the port moving, you can see a bump below his skin where the port is but we don't see the tube.

    Post what drugs you are getting and perhaps someone taking those drugs will join the discussion and be of more assistance.

    Tina
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #4
    Hi
    So sorry you are having so many side effects w/the chemo. I have or have had many of the same effects. I am on FOLFOX and have had 5 treatments.After my 3rd treatment the side effects were real bad and my doctor lowered my dosage. Tell your doctor everything that is going on with you. There are some things that can relieve many of your symptoms.

    Hands/feet...mine are turning red and itching. Doc says it is the 5-FU and to try & keep them dry and use a good cream on them.Says to use the dishwasher or let hubby do dishes:)The numbness is probably from the oxi if you are taking that.I couldn't even feel the floor under my feet because of the neuropathy...thus, lower dosage was needed.

    My eyes drip goo too. I've been using allergy eye drops but someone here might know a better solution? Dry lips, vaseline or barrier ointment helps mine.Dry throat, lots of water helps me.Dry nose, try a little vaseline on a q-tip and saline nasal drops have REALLY helped mine. It might start bleeding, so be gentle with the nose blowing.

    Fatigue/tired I need help w/that myself. It only seems to be real, real bad for about 4-5 days after treatment for me, then I start getting more energy.

    Nausea---has your doctor given you any anti-nausea meds? There are several different kinds in all price ranges. I've only had mild nausea a few times and Phenergan worked fine for me. There are other kinds that are probably better if the nausea is severe.

    Taste/smell...I cannot taste and find myself adding salt to my food. Bad me! Not good.So far I can still smell.

    My port moves too.Not a lot but yes, I can feel the tubing. I figure it is because I am very small chested and there is no fat to sort of cushion it. I'd ask my doctor or nurse though, because we are all different is some aspects. Just to ease your mind, ask questions. I have a running list and take it with me to every appointment and I ask, ask, and ask.Also, the nurses and doctor tell me every visit that if I have ANY questions I can call and ask.

    Hope this helps a little bit. I am new to the site also and fairly new to cancer and chemo.I think some of the other folks on here have a lot of knowledge about all of this and I aim to learn from them.I hope you feel better soon.

    -Pat
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #5
    Nanab.... purple
    Raquel's hands turned dark purple. Are you European or Mexican descent? She told us her onc/ nurses said that those with normally darker skin tended to darken a lot more than those of us who are very light skinned. NanaB (Raquel) actually posted a picture for us to see. One of my chemo buddies (now deceased) had her hands and feet turn a dirty shade of dark brown. She was already a very tanned or dark olive skinned woman.

    My eyes ran. My nose ran. You sound like you'll be getting mouth and throat sores next.

    I'm normal weight and you could see the cath under my skin.

    About your hands swelling, I'd call the onc just to be sure. I know they always checked my ankles before chemo for swelling. Chemo is flushed out through your kidneys and it's very important to drink, drink, drink. Just in case, it wouldn't hurt to call and ask. One of our advanced CC Stage IV's had her ankles / feet swell several times but she is/ was on different meds than you.

    I completed all 12 tx's six months ago next week and my feet still feel like I have wet sand in my socks. My skin on my legs feels odd up to my knees and the tips of my fingers are still pins and needles.

    So life sucks for 6 months while you take FOLFOX. Folfox works so Folfox rocks. Six months long, long life... six months, long, long life. :- )
  • Npcoleman4
    Npcoleman4 Member Posts: 8
    #6
    lcarper2 said:

    npcoleman4
    you need to call your doctor and tell him of the side effects you are having they can change some things or reduce the dose but they need to know you are having these problems have they seen your hands and feet when you go in for visits ? If not show them the next time you go food will not taste good on chemo yogart is good to eat it will take the metal taste out of your mouth. The port needs to be looked at also I had one but not anymore mine never moved so I can't help you with that.

    Thanks for your advice!!!
    I will start eating yogart. I am calling my doctor's office tomorrow morning.
  • Npcoleman4
    Npcoleman4 Member Posts: 8
    #7
    geotina said:

    Nicoleman4
    What chemo drugs are you getting?

    My husband is Stage IV and to be honest, did not experience the type of reactions you are getting. He was very fatigued, had a metal taste and cold sensation but did not experience the rest of it.

    Never had the port moving, you can see a bump below his skin where the port is but we don't see the tube.

    Post what drugs you are getting and perhaps someone taking those drugs will join the discussion and be of more assistance.

    Tina

    Thanks for your advice Geotina
    I am calling my doctor tomorrow about my port and nausea meds. I have Blue Cross Blue Shield and Medicare and for some reason they will not pay for my nausea medication. My nausea medication cost $411.00. My doctor gave me samples of Anzmet to take for nausea.
  • Npcoleman4
    Npcoleman4 Member Posts: 8
    #8
    Jaylo969 said:

    Hi
    So sorry you are having so many side effects w/the chemo. I have or have had many of the same effects. I am on FOLFOX and have had 5 treatments.After my 3rd treatment the side effects were real bad and my doctor lowered my dosage. Tell your doctor everything that is going on with you. There are some things that can relieve many of your symptoms.

    Hands/feet...mine are turning red and itching. Doc says it is the 5-FU and to try & keep them dry and use a good cream on them.Says to use the dishwasher or let hubby do dishes:)The numbness is probably from the oxi if you are taking that.I couldn't even feel the floor under my feet because of the neuropathy...thus, lower dosage was needed.

    My eyes drip goo too. I've been using allergy eye drops but someone here might know a better solution? Dry lips, vaseline or barrier ointment helps mine.Dry throat, lots of water helps me.Dry nose, try a little vaseline on a q-tip and saline nasal drops have REALLY helped mine. It might start bleeding, so be gentle with the nose blowing.

    Fatigue/tired I need help w/that myself. It only seems to be real, real bad for about 4-5 days after treatment for me, then I start getting more energy.

    Nausea---has your doctor given you any anti-nausea meds? There are several different kinds in all price ranges. I've only had mild nausea a few times and Phenergan worked fine for me. There are other kinds that are probably better if the nausea is severe.

    Taste/smell...I cannot taste and find myself adding salt to my food. Bad me! Not good.So far I can still smell.

    My port moves too.Not a lot but yes, I can feel the tubing. I figure it is because I am very small chested and there is no fat to sort of cushion it. I'd ask my doctor or nurse though, because we are all different is some aspects. Just to ease your mind, ask questions. I have a running list and take it with me to every appointment and I ask, ask, and ask.Also, the nurses and doctor tell me every visit that if I have ANY questions I can call and ask.

    Hope this helps a little bit. I am new to the site also and fairly new to cancer and chemo.I think some of the other folks on here have a lot of knowledge about all of this and I aim to learn from them.I hope you feel better soon.

    -Pat

    Thanks Jaylo969 for your advice!!!
    We have alot of the same symptoms. But my port moves and I have fairly large chest. I will take all of your tips to help me through this.
  • Npcoleman4
    Npcoleman4 Member Posts: 8
    #9
    dianetavegia said:

    Nanab.... purple
    Raquel's hands turned dark purple. Are you European or Mexican descent? She told us her onc/ nurses said that those with normally darker skin tended to darken a lot more than those of us who are very light skinned. NanaB (Raquel) actually posted a picture for us to see. One of my chemo buddies (now deceased) had her hands and feet turn a dirty shade of dark brown. She was already a very tanned or dark olive skinned woman.

    My eyes ran. My nose ran. You sound like you'll be getting mouth and throat sores next.

    I'm normal weight and you could see the cath under my skin.

    About your hands swelling, I'd call the onc just to be sure. I know they always checked my ankles before chemo for swelling. Chemo is flushed out through your kidneys and it's very important to drink, drink, drink. Just in case, it wouldn't hurt to call and ask. One of our advanced CC Stage IV's had her ankles / feet swell several times but she is/ was on different meds than you.

    I completed all 12 tx's six months ago next week and my feet still feel like I have wet sand in my socks. My skin on my legs feels odd up to my knees and the tips of my fingers are still pins and needles.

    So life sucks for 6 months while you take FOLFOX. Folfox works so Folfox rocks. Six months long, long life... six months, long, long life. :- )

    Thank you dianetavegia for your advice!!!
    I am a light skinned black woman. I am new to this experience and appreciate all of your advice.
  • Npcoleman4
    Npcoleman4 Member Posts: 8
    #10
    Thanks again everyone who responded
    I am ashamed to say it but prior to being diagnosed I never questioned a doctor or their treatments. At least not to the doctor. So asking questions is new to me and I am learning.
  • geotina
    geotina Member Posts: 2,111 Member
    #11
    Npcoleman4 said:

    Thanks again everyone who responded
    I am ashamed to say it but prior to being diagnosed I never questioned a doctor or their treatments. At least not to the doctor. So asking questions is new to me and I am learning.

    We all did the same thing
    Originally, we were so shocked with the diagnosis, we didn't know what to do or ask but you learn very quickly. Good luck with your treatments. Tina
  • Julie 44
    Julie 44 Member Posts: 476 Member
    #12
    geotina said:

    We all did the same thing
    Originally, we were so shocked with the diagnosis, we didn't know what to do or ask but you learn very quickly. Good luck with your treatments. Tina

    Blue Cross Blue Shield
    I have BCBS too and have no problems getting any meds covered..I am on several different antinausea meds and they are all covered....So I would call them and question that..I have gotten meds to help with the numbness in hands and feet..Plus vitamin B6 it does help some...Try to keep your hands and feet warm that helps alot...Also ask doc for MAGIC MOUTHWASH it helps with the sores alot...Good luck and remember you are not alone in this we are all here for you....JULIE
  • victory10
    victory10 Member Posts: 75
    #13
    dianetavegia said:

    Nanab.... purple
    Raquel's hands turned dark purple. Are you European or Mexican descent? She told us her onc/ nurses said that those with normally darker skin tended to darken a lot more than those of us who are very light skinned. NanaB (Raquel) actually posted a picture for us to see. One of my chemo buddies (now deceased) had her hands and feet turn a dirty shade of dark brown. She was already a very tanned or dark olive skinned woman.

    My eyes ran. My nose ran. You sound like you'll be getting mouth and throat sores next.

    I'm normal weight and you could see the cath under my skin.

    About your hands swelling, I'd call the onc just to be sure. I know they always checked my ankles before chemo for swelling. Chemo is flushed out through your kidneys and it's very important to drink, drink, drink. Just in case, it wouldn't hurt to call and ask. One of our advanced CC Stage IV's had her ankles / feet swell several times but she is/ was on different meds than you.

    I completed all 12 tx's six months ago next week and my feet still feel like I have wet sand in my socks. My skin on my legs feels odd up to my knees and the tips of my fingers are still pins and needles.

    So life sucks for 6 months while you take FOLFOX. Folfox works so Folfox rocks. Six months long, long life... six months, long, long life. :- )

    dianetaviio
    Your posts are so filled with knowledge and helpful tips...Seeing your smile is so encouraging to me :) Just wanted to say Thank you!
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #14
    Hi
    Hi,
    Welcome. People have shared some good advice. We had Blue Cross Blue Shield for 2009. They paid for all meds even Emend. We had to get a note from the doc about the Emend but it went through. Take care.

    Aloha,
    Kathleen

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