Moving to Irinotecan (So scared). Please any experiences with Irinotecan?

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MS2014
MS2014 Member Posts: 58
edited June 2016 in Colorectal Cancer #1

Good morning

We had bad news yesterday. It seems there are new met spots in the liver and we are moving fro FOLFOX to FOLFIRI. From Oxaliplatin to Irinotecan.

We were able to cope with Oxaliplatin side effects easyly. No big side effects, but I wonder if it will be the same with Irinotecan. I read teh web and it seems it is harder than Oxaliplatin

When we started with Oxaliplatin we were prevented for big side effects but finally they were not so huge, they were even almost zero

I'm so scared.

Would be great if you couls share your side effects and how it worked for you, and howlong were you able to use irinotecan.

It seems my mum options are running out and I can't do anything to help.

I feel a terrible pain inside for seeing how tests result don't show any improvement

Hope this time chemotherapy works and the rest of our health problems can be solved.

Thanks for your experiences

 

 

Comments

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #2
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    Hi MS

    My brother was on Irinotecan. The biggest issue he had was diarreah. He took Lomotil and watched what he ate, but the drug did work for him and kept his tumors from growing. He had to come off it because all the chemo was weakening his heart. He has to decide now whether to restart Lonsurf which is a fairly new drug, but it caused him to have a GI bleed and lower bp, so it's going to be a tough call because it's probably his last option. I hope it works well for your mum. My brother is still here 5 years since his diagnosis. Best wishes.

    Lin

    BTW Please make sure you take care of yourself. Many of us neglect our own health as caretakers. Your mum needs you to be healthy so make sure you eat right and keep your own doctor appointments. 

  • MS2014
    MS2014 Member Posts: 58
    edited June 2016 #3
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    UncleBuddy said:

    Hi MS

    My brother was on Irinotecan. The biggest issue he had was diarreah. He took Lomotil and watched what he ate, but the drug did work for him and kept his tumors from growing. He had to come off it because all the chemo was weakening his heart. He has to decide now whether to restart Lonsurf which is a fairly new drug, but it caused him to have a GI bleed and lower bp, so it's going to be a tough call because it's probably his last option. I hope it works well for your mum. My brother is still here 5 years since his diagnosis. Best wishes.

    Lin

    BTW Please make sure you take care of yourself. Many of us neglect our own health as caretakers. Your mum needs you to be healthy so make sure you eat right and keep your own doctor appointments. 

    Thanks for the reply Lin

    Thanks for your help. It is a relief in this horrible situation. Now everything is overwhelming

    Your reply is a ray of ligth

    Knownig it worked for your brother it is a double relief. Do you mind if I ask you something more about your experience on Irinotecan?

    Thanks for your kind words. These days I cant stop crying and for the last half a year I didn't take care much of me .I'm the one who his pussing doctors, reading, asking ...Crying is a part of everyone in our family. Now I'm not the important part of this. While I can keep pushing, reading, visting doctors, having conclusions is enough.

    Just as information. I asked about the Metformin option to our Onchologyst. She sais this is an option and we can explore it. I read it here, adn to be honest sounded like "extrange", but if my doctor says it is an option, I thing we are going to use it. Before proposing it to our doctor I read good trials (at least in vitro)

    I'll open a new threard on Metformin

    All the best to your brother Lin and to all who are battling against cancer. Pls keep strong!!

  • lizard44
    lizard44 Member Posts: 409 Member
    #4
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    Irinotecan

    I'm currently receiving infusions of irinotecan and  Erbitux- have had five so far.  The major side effect I've had as a result of the irinotecn is  some hair loss, I'm constanly dropping hair all over the place, but haven't reached the point yet where I need to  get my head shaved or wear a wig, although I have one on stand-by just in case. Diarrhea is supposed to be a major concern and my onc prescribed diphenoxylate-atropine (Lomotil) when I started on the irinotecan, but so far  I haven't  needed it.  The Erbitux causes constipation, so I think they've balanced each other out. I also try to watch what I eat and avoid foods that have caused me problems in the past, like  fried foods, fatty foods, high fiber foods and vegetables like cabbage, brussels sprouts and broccoli and I eat Yogurt and take  pro-biotics, which seems to help. On the odd occasion that  I slip up with my diet and do  get a touch of diarrhea, I take a dose of Imodium right away  and that seems to keep it in check. MY biggest problem has been  skin eruptions, hives, itching, etc, but that is more related to the Erbitux than  the irinotecan,  I think. Of course, everyone reacts differently to medications and drugs so  your mother's experience may be different, but I  hope  she  has minimal side effects, too. Discuss your concerns with the doctor, ask questions about the side effects and what measures can be taken to avoid them or deal with them, and  if your mother does get side effects, be sure and let her onc know as soon as possible. Good luck!

     

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    #5
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    They put my wife on

    They put my wife on Irinotecan, and she didn't seem to suffer any majors effects from it, and she was on it for quite a while. It didn't slow her cancer much, but it wasn't designed to treat brain tumors either.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #6
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    MS2014 said:

    Thanks for the reply Lin

    Thanks for your help. It is a relief in this horrible situation. Now everything is overwhelming

    Your reply is a ray of ligth

    Knownig it worked for your brother it is a double relief. Do you mind if I ask you something more about your experience on Irinotecan?

    Thanks for your kind words. These days I cant stop crying and for the last half a year I didn't take care much of me .I'm the one who his pussing doctors, reading, asking ...Crying is a part of everyone in our family. Now I'm not the important part of this. While I can keep pushing, reading, visting doctors, having conclusions is enough.

    Just as information. I asked about the Metformin option to our Onchologyst. She sais this is an option and we can explore it. I read it here, adn to be honest sounded like "extrange", but if my doctor says it is an option, I thing we are going to use it. Before proposing it to our doctor I read good trials (at least in vitro)

    I'll open a new threard on Metformin

    All the best to your brother Lin and to all who are battling against cancer. Pls keep strong!!

    It's my brother who was on it, I'm his caretaker but know it kept the tumors from growing anymore while he was on it. Different chemos are different for each person. It's unfortunate that he can't be on it anymore because his heart is so weak.

    Any questions, ask away...

  • MS2014
    MS2014 Member Posts: 58
    #7
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    UncleBuddy said:

    It's my brother who was on it, I'm his caretaker but know it kept the tumors from growing anymore while he was on it. Different chemos are different for each person. It's unfortunate that he can't be on it anymore because his heart is so weak.

    Any questions, ask away...

    Some more questions

    Good morning Lin

    I fully understand if you can't (or don't want to reply my questions). It is hard to stand your  situation. Anyhow thanks in advance

    I'm afraid of what is coming for my mom, so now everything is a doubt fro the following days.

    My major doubs are

    -How long has been your brother with irinotecan?

    - Does irinotecan produced weakness?

    - Was nausea a problem with irinotecan?

    - Hair loss was not an issue for him wasn't it?

    -Does irinotecan produce neuropathy? Oxaliplatin does, but it seems that irinotecan doesn't cause it

    I know everyone is different, but knowing others people experience make me less anxoius about the future.

    I keep your brother and you in my thougths

  • MS2014
    MS2014 Member Posts: 58
    #8
    Options
    lizard44 said:

    Irinotecan

    I'm currently receiving infusions of irinotecan and  Erbitux- have had five so far.  The major side effect I've had as a result of the irinotecn is  some hair loss, I'm constanly dropping hair all over the place, but haven't reached the point yet where I need to  get my head shaved or wear a wig, although I have one on stand-by just in case. Diarrhea is supposed to be a major concern and my onc prescribed diphenoxylate-atropine (Lomotil) when I started on the irinotecan, but so far  I haven't  needed it.  The Erbitux causes constipation, so I think they've balanced each other out. I also try to watch what I eat and avoid foods that have caused me problems in the past, like  fried foods, fatty foods, high fiber foods and vegetables like cabbage, brussels sprouts and broccoli and I eat Yogurt and take  pro-biotics, which seems to help. On the odd occasion that  I slip up with my diet and do  get a touch of diarrhea, I take a dose of Imodium right away  and that seems to keep it in check. MY biggest problem has been  skin eruptions, hives, itching, etc, but that is more related to the Erbitux than  the irinotecan,  I think. Of course, everyone reacts differently to medications and drugs so  your mother's experience may be different, but I  hope  she  has minimal side effects, too. Discuss your concerns with the doctor, ask questions about the side effects and what measures can be taken to avoid them or deal with them, and  if your mother does get side effects, be sure and let her onc know as soon as possible. Good luck!

     

    Thanks for your reply Grace

    If you don't mind me asking something more.....

    - Was Iriontecan your first chemotherapy option?

    - You dont mention it so I think weakness or nausea were not a problem

    - In a week we have a new meeting with our doctor were she will point all the issues. As fas as I have read neuropathy is not an issue for irinotecan (as it was for oxaliplatin). Were you told something of irinotecan neuropathy?

    Thanks in advance and keep figthing showing us the way on how cancer can be battled

    Kisses and hugs from Spain

  • MS2014
    MS2014 Member Posts: 58
    #9
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    beaumontdave said:

    They put my wife on

    They put my wife on Irinotecan, and she didn't seem to suffer any majors effects from it, and she was on it for quite a while. It didn't slow her cancer much, but it wasn't designed to treat brain tumors either.

    Thanks for the reply

    Thanks for your reply beaumontdave. As usual you are allways there.

    So good you have passes across all of this with success. Hope everything remains the same for you

    Best whishes

  • lizard44
    lizard44 Member Posts: 409 Member
    #10
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    MS2014 said:

    Thanks for your reply Grace

    If you don't mind me asking something more.....

    - Was Iriontecan your first chemotherapy option?

    - You dont mention it so I think weakness or nausea were not a problem

    - In a week we have a new meeting with our doctor were she will point all the issues. As fas as I have read neuropathy is not an issue for irinotecan (as it was for oxaliplatin). Were you told something of irinotecan neuropathy?

    Thanks in advance and keep figthing showing us the way on how cancer can be battled

    Kisses and hugs from Spain

    Irinotecan

    No, it wasn't my first option.  I had already  recieved  eight Folfox plus Avastin treatments which shrank  my liver tumor and 28 radiation treatments with a  5-FU pump 24/5 that  just about wiped out  the rectal tumor to the point it doesn't show on a CT scan, but allowed the  liver tumor to double in size. I was given three  infusions of Avastin plus levoleucovorin Calcium  plus  a 5-Fu pump, and the liver tumor grew another 18%. The Irinotecan/Erbitux is another attempt to shrink the liver tumor enough so it can be ablated or a resection done. I have one more  Ironotecan/Erbitux treatment before another scan is done to see if and how they are working.

    Weakness hasn't been a problem.  I  get  a little fatigued,  but that could also be  because of my age (71) as much as the chemo.  I've learned to pace myself so the fatigue has been more an annoyance than a major problem.  I'm still able to get things done,  and I  get outside to garden,  shop, attend events, etc.  although I am careful to avoid congested ares and crowds as much as possible.

    Nausea has not been a problem but I  receive  anti-nausea meds, anti- diarrhea meds and a sterioud before my infusions, so that probably helps a lot.

    I haven't  heard of neuropathy being a problem with Irinotecan, and it isn't listed as a side effect on the info sheet I was given. I do have some residual neuropathy  from the  Oxaliplatin; it hasn't gotten any worse on the Irinotecan.

    I hope that info helps alleviate some of your concerns and that your mother does well  with her treatment.  

    Cheers,

    Grace/lizard44

  • MS2014
    MS2014 Member Posts: 58
    #11
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    lizard44 said:

    Irinotecan

    No, it wasn't my first option.  I had already  recieved  eight Folfox plus Avastin treatments which shrank  my liver tumor and 28 radiation treatments with a  5-FU pump 24/5 that  just about wiped out  the rectal tumor to the point it doesn't show on a CT scan, but allowed the  liver tumor to double in size. I was given three  infusions of Avastin plus levoleucovorin Calcium  plus  a 5-Fu pump, and the liver tumor grew another 18%. The Irinotecan/Erbitux is another attempt to shrink the liver tumor enough so it can be ablated or a resection done. I have one more  Ironotecan/Erbitux treatment before another scan is done to see if and how they are working.

    Weakness hasn't been a problem.  I  get  a little fatigued,  but that could also be  because of my age (71) as much as the chemo.  I've learned to pace myself so the fatigue has been more an annoyance than a major problem.  I'm still able to get things done,  and I  get outside to garden,  shop, attend events, etc.  although I am careful to avoid congested ares and crowds as much as possible.

    Nausea has not been a problem but I  receive  anti-nausea meds, anti- diarrhea meds and a sterioud before my infusions, so that probably helps a lot.

    I haven't  heard of neuropathy being a problem with Irinotecan, and it isn't listed as a side effect on the info sheet I was given. I do have some residual neuropathy  from the  Oxaliplatin; it hasn't gotten any worse on the Irinotecan.

    I hope that info helps alleviate some of your concerns and that your mother does well  with her treatment.  

    Cheers,

    Grace/lizard44

    Thanks again

    Now I am overwhelmed by my mother situation. Your words ease a lot my concerns. I will read again with calm your words and reply back. Thanks again for taking your time to give me a ray of ligth

    Best whishes from Spain Grace

  • MS2014
    MS2014 Member Posts: 58
    edited June 2016 #12
    Options
    lizard44 said:

    Irinotecan

    No, it wasn't my first option.  I had already  recieved  eight Folfox plus Avastin treatments which shrank  my liver tumor and 28 radiation treatments with a  5-FU pump 24/5 that  just about wiped out  the rectal tumor to the point it doesn't show on a CT scan, but allowed the  liver tumor to double in size. I was given three  infusions of Avastin plus levoleucovorin Calcium  plus  a 5-Fu pump, and the liver tumor grew another 18%. The Irinotecan/Erbitux is another attempt to shrink the liver tumor enough so it can be ablated or a resection done. I have one more  Ironotecan/Erbitux treatment before another scan is done to see if and how they are working.

    Weakness hasn't been a problem.  I  get  a little fatigued,  but that could also be  because of my age (71) as much as the chemo.  I've learned to pace myself so the fatigue has been more an annoyance than a major problem.  I'm still able to get things done,  and I  get outside to garden,  shop, attend events, etc.  although I am careful to avoid congested ares and crowds as much as possible.

    Nausea has not been a problem but I  receive  anti-nausea meds, anti- diarrhea meds and a sterioud before my infusions, so that probably helps a lot.

    I haven't  heard of neuropathy being a problem with Irinotecan, and it isn't listed as a side effect on the info sheet I was given. I do have some residual neuropathy  from the  Oxaliplatin; it hasn't gotten any worse on the Irinotecan.

    I hope that info helps alleviate some of your concerns and that your mother does well  with her treatment.  

    Cheers,

    Grace/lizard44

    Dear Grace

    I took my time to read your post.

    Ypur comments ease my doubts. I had read terrible thngs for irinotecan tretments and I'm scared of the reaction my mom couls have. My mother started with folfox, had a liver resection and in december new mets appeared in the liver. Started again folfox but it seems it didn't work.

    Knowing you are having irinotecan without big issues is a releif. I had read terrible things on expereineces with irinotecan, but it is normal that we usually  write on the internet when we have a problem with the treatment

    Thanks again for your kind words and for your time

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #13
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    MS2014 said:

    Some more questions

    Good morning Lin

    I fully understand if you can't (or don't want to reply my questions). It is hard to stand your  situation. Anyhow thanks in advance

    I'm afraid of what is coming for my mom, so now everything is a doubt fro the following days.

    My major doubs are

    -How long has been your brother with irinotecan?

    - Does irinotecan produced weakness?

    - Was nausea a problem with irinotecan?

    - Hair loss was not an issue for him wasn't it?

    -Does irinotecan produce neuropathy? Oxaliplatin does, but it seems that irinotecan doesn't cause it

    I know everyone is different, but knowing others people experience make me less anxoius about the future.

    I keep your brother and you in my thougths

    Hi MS

    Sorry, been busy bringing dad and my brother to doctors over the last few days. Everyone wants re-checks on my brother, so I havent had time to be online.

    I can't remember how long he was on irinotecan, but the only side effect he had was diarreah and a little bit of hair loss. He didn't lose it all, just spotty areas. It didn't cause neuropathy or weakness. He did sleep a little more, but otherwise, he handled it fine. He was on several different combinations of chemo before this. He was on Folfiri, erbitux, and a couple of others. The irinotecan I believe was the last one before Lonsurf. The doctor was happy with his results because it stopped the tumors from growing. It didn't really shrink them, but stopped the growth which was a good thing. 

    My brother's weakened heart started 16 years ago when he started chemo for non-hodgkins lymphoma. Then in 2011 he started on all the different chemos for his rectal caancer. The combination of all these chemos made his heart worse. Maybe if he hadn't had NHL in 2000 he could have tolerated these chemos today. 

    Stay postive. Chemos work differently for everyone. The doctor told my brother stage 4 is not always a death sentence. People live with cancer for many years. Chemo is used for maintenance. If his heart were stronger, he'd probably have a much longer life being on the chemo.

    Best wishes.

    Lin

  • MS2014
    MS2014 Member Posts: 58
    #14
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    UncleBuddy said:

    Hi MS

    Sorry, been busy bringing dad and my brother to doctors over the last few days. Everyone wants re-checks on my brother, so I havent had time to be online.

    I can't remember how long he was on irinotecan, but the only side effect he had was diarreah and a little bit of hair loss. He didn't lose it all, just spotty areas. It didn't cause neuropathy or weakness. He did sleep a little more, but otherwise, he handled it fine. He was on several different combinations of chemo before this. He was on Folfiri, erbitux, and a couple of others. The irinotecan I believe was the last one before Lonsurf. The doctor was happy with his results because it stopped the tumors from growing. It didn't really shrink them, but stopped the growth which was a good thing. 

    My brother's weakened heart started 16 years ago when he started chemo for non-hodgkins lymphoma. Then in 2011 he started on all the different chemos for his rectal caancer. The combination of all these chemos made his heart worse. Maybe if he hadn't had NHL in 2000 he could have tolerated these chemos today. 

    Stay postive. Chemos work differently for everyone. The doctor told my brother stage 4 is not always a death sentence. People live with cancer for many years. Chemo is used for maintenance. If his heart were stronger, he'd probably have a much longer life being on the chemo.

    Best wishes.

    Lin

    Hi Lin

    Nothing to be sorry about. First things first. Yoor brother must be your first priority.Nothing else.

    I have suffered this with my mother. When some doctors thnik there is nothing more to do, another see an option or something to try. I don't want to give you false hope, but every recheck could be an option.

    As usual I'll read carefully your lines and as usual I appreciate even more your kind words, now that you and your family are struggling through this awfull situation

    I keep you in my thoughts

    Best of the lucks Lin

     

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    edited June 2016 #15
    Options
    MS2014 said:

    Hi Lin

    Nothing to be sorry about. First things first. Yoor brother must be your first priority.Nothing else.

    I have suffered this with my mother. When some doctors thnik there is nothing more to do, another see an option or something to try. I don't want to give you false hope, but every recheck could be an option.

    As usual I'll read carefully your lines and as usual I appreciate even more your kind words, now that you and your family are struggling through this awfull situation

    I keep you in my thoughts

    Best of the lucks Lin

     

    Thanks MS

    His cardiologist is doing a MUGA scan in 2 weeks to check his heart function again. He said if the oncologist finds something else and his MUGA numbers are over a certain threshhold, he may be able to go back on chemo. So far lonsurf was his only option at this point. His oncologist said he can change his mind if he wants and we can go back on Lonsurf or something else if something new is released. I think she is thinking she can lower the dose and see if that works. My brother is a little afraid at this point. Whatever he decides, I will back his decision. Right now he wants to stop but he could change his mind. I think he needed this break. it's been a long road for him.

    His oncologist is wonderful, always looking for the next best thing. I am sure if she finds something she will let us know. 

    Your mom is very lucky too have you in her corner. It's hard to battle through this alone. I hope chemo works well for her. Good luck.

     

  • MS2014
    MS2014 Member Posts: 58
    edited June 2016 #16
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    UncleBuddy said:

    Thanks MS

    His cardiologist is doing a MUGA scan in 2 weeks to check his heart function again. He said if the oncologist finds something else and his MUGA numbers are over a certain threshhold, he may be able to go back on chemo. So far lonsurf was his only option at this point. His oncologist said he can change his mind if he wants and we can go back on Lonsurf or something else if something new is released. I think she is thinking she can lower the dose and see if that works. My brother is a little afraid at this point. Whatever he decides, I will back his decision. Right now he wants to stop but he could change his mind. I think he needed this break. it's been a long road for him.

    His oncologist is wonderful, always looking for the next best thing. I am sure if she finds something she will let us know. 

    Your mom is very lucky too have you in her corner. It's hard to battle through this alone. I hope chemo works well for her. Good luck.

     

    Come on Lin Push the next treatment

    Come on Lin, Push the next treatment. Unfortunately all who are suffering cancer in one or other way have been pushed to the limit in several ocassions. Sometimes, manytimes, finally there is a way. I have sufferes this with my mom and could find a way. I really whish the whise doctors can have a optimal solution for your brother.

    So please, keep on fighthing!!

    Lots of kisses and hughs and The best of the lucks

  • Faithandstrength
    Faithandstrength Member Posts: 19
    edited June 2016 #17
    Options
    Don't fear

    My mom was given irinotecan and she didn't experience any major side effects. what really knocked her down was oxaliplatin, but no problems with irinotecan. Wish you the best hang in there and if it does bother you or have an effect you'll figure out the next step, we have to see what our bodies take in and what they don't through this process and adjust accordingly. 

  • MS2014
    MS2014 Member Posts: 58
    #18
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    Faithandstrength said:

    Don't fear

    My mom was given irinotecan and she didn't experience any major side effects. what really knocked her down was oxaliplatin, but no problems with irinotecan. Wish you the best hang in there and if it does bother you or have an effect you'll figure out the next step, we have to see what our bodies take in and what they don't through this process and adjust accordingly. 

    Thanks for the reply Faithandstrength

    Sorry for my late reply, but last week has been hell.

    Unfortunately chemo was suspended due an infection, but it is relieveing to know many people undewent FOLFIRI withour many problems

    We hope to start soon our folfiri chemo sesions

    Thanks so much for your time

    All the best for your mom

     

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