Is the chemopherapy drug 5FU too toxic?

connieprice1
connieprice1 Member Posts: 300 Member
edited March 2014 in Head and Neck Cancer #1
My wife Connie is in a clinical trial. She is doing induction chemtherapy. She has cancer at the base of her tongue that spread to the lymph nodes in her neck. Her chemo regiment is 3 week treatments 3 times. The 1st day she does Cetuximab, Cisplatin and Doxetacel, then she takes home a pump with 5FU which pumps continuous over the next 4 days (96 hrs) The problem is the 5FU drug seems not to well for her. It causes diarrhea continuously and makes her very weak and dehydrated. She also gets very nauseated from it also. Then when I checked it our tonight on the net it was classified as somewhat dangerous. If anyone has taken this chemo drug before I would really appreciate hearing your thoughts. Thanks, Homer

Comments

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #2
    Yes I did
    I took the 5FU back in feb and march of 1996, that was in the hospital 24-7. Nice Connie is able to go home. Worked well for me, I am still here. Problem with all the chemo's is that everyone responds differently to the same drug. Just so you know I had diarrhea. After following many here and locally I do not know anyone who did not get dehydrated. No chemo can be good for you.

    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    5FU
    Hi Homer

    I was on a schedule similar to your wife. I was diagnosed STG III SCC HPV+ Right Tonsil and a lymph node on that same side - January 2009.

    My schedule was the nine weeks (three week cycles) with Cisplatin, Taxotere and then the pump with 5FU. Monday was the initial, then the pump came off Friday mornings.

    Like mentioned everyone is different. The gave me the EMEND for the first three days of each cycle. That helped a lot as for nausea, I never got sick once. I did become slightly de-hydrated the second cycle. That's always a concern and you should stay up on that. My wife found out about tenting. Where you gently pinch and lift the skin on the back of the hands. If it stays up like a tent, you need more fluids. It should be flexible and spring back to its original form when you pinch it.

    After that schedule, I also had seven weeks of concurrent chemo/rads. Carboplatin every Monday, and radiation every day...Amifostine Injections just prior to the radiation.

    For that they just gave me Zofran or something else incase of nausea.

    But, other than the pump being cumbersome it wasn't that bad. I did tend to seem to have this odor about me though...I always seemed to think I smelt like a medicinal tea bag....

    I was always ready for it to come off though. Which they followed with fluids. Then the following Monday they'd give me an injection of Neulasta for bone marrow and blood cell reproduction I believe.

    Best,
    John
  • ljoy
    ljoy Member Posts: 94
    #4
    5FU
    I had 5FU in 2005 for right tonsil cancer with one lymph node. Was scheduled for three rounds but sent to hospital after first four days of first dose. Was told by oncologist that I was one of a small percentage who could not carry off 5FU. Thus it became very toxic to my system. I could not have another dose for it might be fatal. I volunteer at a cancer center and it is used alot. But like we all say everyone is different and for some it is too strong.
  • Landranger25
    Landranger25 Member Posts: 210 Member
    #5
    Skiffin16 said:

    5FU
    Hi Homer

    I was on a schedule similar to your wife. I was diagnosed STG III SCC HPV+ Right Tonsil and a lymph node on that same side - January 2009.

    My schedule was the nine weeks (three week cycles) with Cisplatin, Taxotere and then the pump with 5FU. Monday was the initial, then the pump came off Friday mornings.

    Like mentioned everyone is different. The gave me the EMEND for the first three days of each cycle. That helped a lot as for nausea, I never got sick once. I did become slightly de-hydrated the second cycle. That's always a concern and you should stay up on that. My wife found out about tenting. Where you gently pinch and lift the skin on the back of the hands. If it stays up like a tent, you need more fluids. It should be flexible and spring back to its original form when you pinch it.

    After that schedule, I also had seven weeks of concurrent chemo/rads. Carboplatin every Monday, and radiation every day...Amifostine Injections just prior to the radiation.

    For that they just gave me Zofran or something else incase of nausea.

    But, other than the pump being cumbersome it wasn't that bad. I did tend to seem to have this odor about me though...I always seemed to think I smelt like a medicinal tea bag....

    I was always ready for it to come off though. Which they followed with fluids. Then the following Monday they'd give me an injection of Neulasta for bone marrow and blood cell reproduction I believe.

    Best,
    John

    Me too
    Very similar to John. Treatment back in August, September and October 2009. 3 chemo cycles over 9 weeks. Cisplatin all day Monday at the chemo center, 5FU next 96 hours by pump. Pump off on Friday. First week wasn't bad but then I was healthy and strong. 2 weeks off before round 2. Worst of all for me. Got dehydrated and had to have hydration IV 3 days in a row. Felt just awful by weeks end. 2 weeks later braced for round 3 and finished up. All while getting 33 rad treatments at the same time. Just got home from ENT visit this morning. Pet scan of November 19th all good. NED, just some scarring at site of old tumor. Feeling as good today as before all this started. I put my fate in the hands of my cancer team and did everything they directed. If you are concerned about the 5FU, speak up. My ENT doesn't sugar coat anything. My wife, an RN, and I like it that way. Good luck.

    Regards, Mike
  • timreichhart
    timreichhart Member Posts: 194
    #6
    ljoy said:

    5FU
    I had 5FU in 2005 for right tonsil cancer with one lymph node. Was scheduled for three rounds but sent to hospital after first four days of first dose. Was told by oncologist that I was one of a small percentage who could not carry off 5FU. Thus it became very toxic to my system. I could not have another dose for it might be fatal. I volunteer at a cancer center and it is used alot. But like we all say everyone is different and for some it is too strong.

    5FU
    like everybody as been saying everyone responds differently to 5FU I had 5FU for my NPC that stuff made me more constipation anything else. I was told that Cisplatin is more toxic then what 5FU was due to Cisplatin that can damage your kidneys and liver. Also any chemo you get is going to be more toxic then other chemo is it just depends how your body responds to it.
  • ratface
    ratface Member Posts: 1,337 Member
    #7
    timreichhart said:

    5FU
    like everybody as been saying everyone responds differently to 5FU I had 5FU for my NPC that stuff made me more constipation anything else. I was told that Cisplatin is more toxic then what 5FU was due to Cisplatin that can damage your kidneys and liver. Also any chemo you get is going to be more toxic then other chemo is it just depends how your body responds to it.

    SPOHNC December issue says "NO"
    Try and bring up VOl.20 No. 4 SPOHNC newsletter lead article, "Clinical Trials" Third paragraph, second from last sentence, December 2010.

    "Preliminary toxicity results presented this year at ASCO showed no unusual toxicity in either arm" That is arm of the clinical trial they refer to. However it obviously is causing your wife problems but I was just trying to answer your initial question. Also if she has to come off it don't fret as in the same article it cites no additional proven benefit although it may bear out that way, results are pending.
  • Pam M
    Pam M Member Posts: 2,196
    #8
    I Had It, Too
    Homer,
    I had induction chemo similar to the regimens John and Mike had, Cisplatin, taxotere and 5FU. Only difference is I had chemo lounge day on Wednesdays, and had the pump on for five days, not four.

    I had diarrhea during quite a bit of the induction period. I had to devote myself to getting in enough fluids and calories - I found that I had to write down what I took in for a while, because I often thought I'd done good, when that wasn't the case, so I'd have to take in a lot of calories and water at night.

    Some days were rough, but I've never regretted "breaking out the big chemo guns" as my doc would say. I, too had Emend for the first three days - it really helped. I also too, my Ondansetron on a schedule, I never waited for nausea to kick in. I did notice a direct correlation between my water and calorie intake, and the way I felt in general.

    For me, the first round of chemo was the hardest on my GI tract.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Hi Homer
    I believe if you read up on most of the chemo that we are giving it says the same thing so don’t let it worry you too much. The one and most important thing is to look out for dehydration, make sure she is drinking as much liquids as possible and do the poor man hydration test of pinching the skin. If in drought don’t be afraid to call the doctor.

    All the best to you both
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #10
    Hondo said:

    Hi Homer
    I believe if you read up on most of the chemo that we are giving it says the same thing so don’t let it worry you too much. The one and most important thing is to look out for dehydration, make sure she is drinking as much liquids as possible and do the poor man hydration test of pinching the skin. If in drought don’t be afraid to call the doctor.

    All the best to you both

    Homer
    Carried the FU5 pump for 96-hours, twice, and think it is a standard of H&N. I also carried a Cisplatin pump for the same durations, so it's hard for me to differentiate between the two drugs- which did this to me, and which did that, etc. This delivery is kinda unique, for better or worse, and rendered me too sick to get the rads in week #5, and I began #6 in the hospital (4-night stay). That was back in early-09, Homer, and I am one without regret for what I experienced in treatment. Things get rough- let the Drs. know, and get their advice.

    And, heed the advice you get here- we've all been down the road you-two are on, now. Hondo mentioning Hydration is an example, along with countless other examples from him, and others. This is a good place to go for help, so don't hesitate to ask for it.

    kcass
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #11
    fisrpotpe said:

    Yes I did
    I took the 5FU back in feb and march of 1996, that was in the hospital 24-7. Nice Connie is able to go home. Worked well for me, I am still here. Problem with all the chemo's is that everyone responds differently to the same drug. Just so you know I had diarrhea. After following many here and locally I do not know anyone who did not get dehydrated. No chemo can be good for you.

    John

    5FU
    Well, I guess everyone set me straight on the issue. I appreciate everyone's honest answers and I will talk to my wife about all this. She had to go to the E.R. yesterday for diarrhea, high blood pressure and dehydration and today they moved her to a private room. She gets the pump off tomorrow at 6pm and I think she will start stablizing after that. I know we will stick with the treatments and I want to thank everyone for your replys. On the bright side she has 1 treatment of Cetuximab next week and then a week off. Then she will be on her 3rd and last induction treatment Jan.4, 2011, then the final 2 weeks should be a breeze. Then she starts 7 weeks of radiation and once a week carboplatin. Hopefully she will survive all this treatment and hopefully it will work. I was going to say then we can go back to our normal lives but after this we will never be able to take life for granted again and we will appreciate our time together on this earth a whole lot more. It's really been rough on Connie, she had a top denture already then the radiation oncologist talked her into having her bottom teeth pulled, add then losing her hair to chemo and she is ready to cry when she looks in the mirror. I tell her she is like the bionic woman, her hair will grow back and the cancer dentist inserted 4 implants for her dentures to be permanent. Someday I hope we can put this behind us but it is overwhelming sometimes. Thanks to all, Homer
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #12
    Skiffin16 said:

    5FU
    Hi Homer

    I was on a schedule similar to your wife. I was diagnosed STG III SCC HPV+ Right Tonsil and a lymph node on that same side - January 2009.

    My schedule was the nine weeks (three week cycles) with Cisplatin, Taxotere and then the pump with 5FU. Monday was the initial, then the pump came off Friday mornings.

    Like mentioned everyone is different. The gave me the EMEND for the first three days of each cycle. That helped a lot as for nausea, I never got sick once. I did become slightly de-hydrated the second cycle. That's always a concern and you should stay up on that. My wife found out about tenting. Where you gently pinch and lift the skin on the back of the hands. If it stays up like a tent, you need more fluids. It should be flexible and spring back to its original form when you pinch it.

    After that schedule, I also had seven weeks of concurrent chemo/rads. Carboplatin every Monday, and radiation every day...Amifostine Injections just prior to the radiation.

    For that they just gave me Zofran or something else incase of nausea.

    But, other than the pump being cumbersome it wasn't that bad. I did tend to seem to have this odor about me though...I always seemed to think I smelt like a medicinal tea bag....

    I was always ready for it to come off though. Which they followed with fluids. Then the following Monday they'd give me an injection of Neulasta for bone marrow and blood cell reproduction I believe.

    Best,
    John

    5FU
    Well, I guess everyone set me straight on the issue. I appreciate everyone's honest answers and I will talk to my wife about all this. She had to go to the E.R. yesterday for diarrhea, high blood pressure and dehydration and today they moved her to a private room. She gets the pump off tomorrow at 6pm and I think she will start stablizing after that. I know we will stick with the treatments and I want to thank everyone for your replys. On the bright side she has 1 treatment of Cetuximab next week and then a week off. Then she will be on her 3rd and last induction treatment Jan.4, 2011, then the final 2 weeks should be a breeze. Then she starts 7 weeks of radiation and once a week carboplatin. Hopefully she will survive all this treatment and hopefully it will work. I was going to say then we can go back to our normal lives but after this we will never be able to take life for granted again and we will appreciate our time together on this earth a whole lot more. It's really been rough on Connie, she had a top denture already then the radiation oncologist talked her into having her bottom teeth pulled, add then losing her hair to chemo and she is ready to cry when she looks in the mirror. I tell her she is like the bionic woman, her hair will grow back and the cancer dentist inserted 4 implants for her dentures to be permanent. Someday I hope we can put this behind us but it is overwhelming sometimes. Thanks to all, Homer
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #13
    ljoy said:

    5FU
    I had 5FU in 2005 for right tonsil cancer with one lymph node. Was scheduled for three rounds but sent to hospital after first four days of first dose. Was told by oncologist that I was one of a small percentage who could not carry off 5FU. Thus it became very toxic to my system. I could not have another dose for it might be fatal. I volunteer at a cancer center and it is used alot. But like we all say everyone is different and for some it is too strong.

    5FU
    Well, I guess everyone set me straight on the issue. I appreciate everyone's honest answers and I will talk to my wife about all this. She had to go to the E.R. yesterday for diarrhea, high blood pressure and dehydration and today they moved her to a private room. She gets the pump off tomorrow at 6pm and I think she will start stablizing after that. I know we will stick with the treatments and I want to thank everyone for your replys. On the bright side she has 1 treatment of Cetuximab next week and then a week off. Then she will be on her 3rd and last induction treatment Jan.4, 2011, then the final 2 weeks should be a breeze. Then she starts 7 weeks of radiation and once a week carboplatin. Hopefully she will survive all this treatment and hopefully it will work. I was going to say then we can go back to our normal lives but after this we will never be able to take life for granted again and we will appreciate our time together on this earth a whole lot more. It's really been rough on Connie, she had a top denture already then the radiation oncologist talked her into having her bottom teeth pulled, add then losing her hair to chemo and she is ready to cry when she looks in the mirror. I tell her she is like the bionic woman, her hair will grow back and the cancer dentist inserted 4 implants for her dentures to be permanent. Someday I hope we can put this behind us but it is overwhelming sometimes. Thanks to all, Homer
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #14
    Pam M said:

    I Had It, Too
    Homer,
    I had induction chemo similar to the regimens John and Mike had, Cisplatin, taxotere and 5FU. Only difference is I had chemo lounge day on Wednesdays, and had the pump on for five days, not four.

    I had diarrhea during quite a bit of the induction period. I had to devote myself to getting in enough fluids and calories - I found that I had to write down what I took in for a while, because I often thought I'd done good, when that wasn't the case, so I'd have to take in a lot of calories and water at night.

    Some days were rough, but I've never regretted "breaking out the big chemo guns" as my doc would say. I, too had Emend for the first three days - it really helped. I also too, my Ondansetron on a schedule, I never waited for nausea to kick in. I did notice a direct correlation between my water and calorie intake, and the way I felt in general.

    For me, the first round of chemo was the hardest on my GI tract.

    5FU
    Well, I guess everyone set me straight on the issue. I appreciate everyone's honest answers and I will talk to my wife about all this. She had to go to the E.R. yesterday for diarrhea, high blood pressure and dehydration and today they moved her to a private room. She gets the pump off tomorrow at 6pm and I think she will start stablizing after that. I know we will stick with the treatments and I want to thank everyone for your replys. On the bright side she has 1 treatment of Cetuximab next week and then a week off. Then she will be on her 3rd and last induction treatment Jan.4, 2011, then the final 2 weeks should be a breeze. Then she starts 7 weeks of radiation and once a week carboplatin. Hopefully she will survive all this treatment and hopefully it will work. I was going to say then we can go back to our normal lives but after this we will never be able to take life for granted again and we will appreciate our time together on this earth a whole lot more. It's really been rough on Connie, she had a top denture already then the radiation oncologist talked her into having her bottom teeth pulled, add then losing her hair to chemo and she is ready to cry when she looks in the mirror. I tell her she is like the bionic woman, her hair will grow back and the cancer dentist inserted 4 implants for her dentures to be permanent. Someday I hope we can put this behind us but it is overwhelming sometimes. Thanks to all, Homer
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #15
    Hondo said:

    Hi Homer
    I believe if you read up on most of the chemo that we are giving it says the same thing so don’t let it worry you too much. The one and most important thing is to look out for dehydration, make sure she is drinking as much liquids as possible and do the poor man hydration test of pinching the skin. If in drought don’t be afraid to call the doctor.

    All the best to you both

    5FU
    Well, I guess everyone set me straight on the issue. I appreciate everyone's honest answers and I will talk to my wife about all this. She had to go to the E.R. yesterday for diarrhea, high blood pressure and dehydration and today they moved her to a private room. She gets the pump off tomorrow at 6pm and I think she will start stablizing after that. I know we will stick with the treatments and I want to thank everyone for your replys. On the bright side she has 1 treatment of Cetuximab next week and then a week off. Then she will be on her 3rd and last induction treatment Jan.4, 2011, then the final 2 weeks should be a breeze. Then she starts 7 weeks of radiation and once a week carboplatin. Hopefully she will survive all this treatment and hopefully it will work. I was going to say then we can go back to our normal lives but after this we will never be able to take life for granted again and we will appreciate our time together on this earth a whole lot more. It's really been rough on Connie, she had a top denture already then the radiation oncologist talked her into having her bottom teeth pulled, add then losing her hair to chemo and she is ready to cry when she looks in the mirror. I tell her she is like the bionic woman, her hair will grow back and the cancer dentist inserted 4 implants for her dentures to be permanent. Someday I hope we can put this behind us but it is overwhelming sometimes. Thanks to all, Homer
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #16
    Skiffin16 said:

    5FU
    Hi Homer

    I was on a schedule similar to your wife. I was diagnosed STG III SCC HPV+ Right Tonsil and a lymph node on that same side - January 2009.

    My schedule was the nine weeks (three week cycles) with Cisplatin, Taxotere and then the pump with 5FU. Monday was the initial, then the pump came off Friday mornings.

    Like mentioned everyone is different. The gave me the EMEND for the first three days of each cycle. That helped a lot as for nausea, I never got sick once. I did become slightly de-hydrated the second cycle. That's always a concern and you should stay up on that. My wife found out about tenting. Where you gently pinch and lift the skin on the back of the hands. If it stays up like a tent, you need more fluids. It should be flexible and spring back to its original form when you pinch it.

    After that schedule, I also had seven weeks of concurrent chemo/rads. Carboplatin every Monday, and radiation every day...Amifostine Injections just prior to the radiation.

    For that they just gave me Zofran or something else incase of nausea.

    But, other than the pump being cumbersome it wasn't that bad. I did tend to seem to have this odor about me though...I always seemed to think I smelt like a medicinal tea bag....

    I was always ready for it to come off though. Which they followed with fluids. Then the following Monday they'd give me an injection of Neulasta for bone marrow and blood cell reproduction I believe.

    Best,
    John

    5FU
    Well, I guess everyone set me straight on the issue. I appreciate everyone's honest answers and I will talk to my wife about all this. She had to go to the E.R. yesterday for diarrhea, high blood pressure and dehydration and today they moved her to a private room. She gets the pump off tomorrow at 6pm and I think she will start stablizing after that. I know we will stick with the treatments and I want to thank everyone for your replys. On the bright side she has 1 treatment of Cetuximab next week and then a week off. Then she will be on her 3rd and last induction treatment Jan.4, 2011, then the final 2 weeks should be a breeze. Then she starts 7 weeks of radiation and once a week carboplatin. Hopefully she will survive all this treatment and hopefully it will work. I was going to say then we can go back to our normal lives but after this we will never be able to take life for granted again and we will appreciate our time together on this earth a whole lot more. It's really been rough on Connie, she had a top denture already then the radiation oncologist talked her into having her bottom teeth pulled, add then losing her hair to chemo and she is ready to cry when she looks in the mirror. I tell her she is like the bionic woman, her hair will grow back and the cancer dentist inserted 4 implants for her dentures to be permanent. Someday I hope we can put this behind us but it is overwhelming sometimes. Thanks to all, Homer
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #17
    Hondo said:

    Hi Homer
    I believe if you read up on most of the chemo that we are giving it says the same thing so don’t let it worry you too much. The one and most important thing is to look out for dehydration, make sure she is drinking as much liquids as possible and do the poor man hydration test of pinching the skin. If in drought don’t be afraid to call the doctor.

    All the best to you both

    5FU
    Well, I guess everyone set me straight on the issue. I appreciate everyone's honest answers and I will talk to my wife about all this. She had to go to the E.R. yesterday for diarrhea, high blood pressure and dehydration and today they moved her to a private room. She gets the pump off tomorrow at 6pm and I think she will start stablizing after that. I know we will stick with the treatments and I want to thank everyone for your replys. On the bright side she has 1 treatment of Cetuximab next week and then a week off. Then she will be on her 3rd and last induction treatment Jan.4, 2011, then the final 2 weeks should be a breeze. Then she starts 7 weeks of radiation and once a week carboplatin. Hopefully she will survive all this treatment and hopefully it will work. I was going to say then we can go back to our normal lives but after this we will never be able to take life for granted again and we will appreciate our time together on this earth a whole lot more. It's really been rough on Connie, she had a top denture already then the radiation oncologist talked her into having her bottom teeth pulled, add then losing her hair to chemo and she is ready to cry when she looks in the mirror. I tell her she is like the bionic woman, her hair will grow back and the cancer dentist inserted 4 implants for her dentures to be permanent. Someday I hope we can put this behind us but it is overwhelming sometimes. Thanks to all, Homer

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