Mom most likely to be diagnosed with Stage IV Colon Cancer

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  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Cammie88 said:

    Dan,
     
    I don't know if you

    Dan,

     

    I don't know if you have seen some of my other comments, but mom is most worried about the Chemo.  moreso than the diagnosis itself.  She is exhausted today (2nd day post-op) so when she is ready I will read her exactly what you wrote.  And once home I plan on getting her on here so she can ask questions from her side of things.  I will tell her of all of the wonderful people I have already met and  the incredible love & support I have experienced in just 3 days.  I don't know really how I found this site because I wasn't looking for a support group.  And to be honest, I never would have thought of myself as needing one.  But I do and it was God's work!

     

    You all will be the ones who beat it, mom included!!!

     

    Christie

    It sounds like they got it

    It sounds like they got it all. That is a good sign. Hopefully it will never return or at least give her several years NED (No Evidence of Disease).

    BTW, I am an 8 year stage IV survivor who is currently NED. Hope that helps.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Cammie88 said:

    Hello again friends,
    I wanted

    Hello again friends,

    I wanted to update you on mom and get more feedback.  One of her surgeons was in today and said she came thru surgery with flying colors and they are confident they got all of the cancer (2 colon tumors and mets to right ovary).  She was started back on a liquid diet today which she is extremely happy about!!!!  She also met her oncologist, who she seems to like (I was not here) and he told her Chemo once every 2 weeks for about 6 months.  I guess that works out to about 12 treatments.  Has anyone else had it in this manner?   Also, for when we go for the office visit in about 3 weeks, could you all throw out some names of Chemo drugs that you have had, side effects etc?  Mom seems more concerned about the Chemo than the diagnosis itself.  

    Thank you to all of my new friends & those to come,

    Christie

    PS:  just realized I never told you mom's name is Julie.

    Chemo is by no means fun,

    but it is doable.  I've known a number of people who worked while doing it.  Full disclosure...I personally got hit hard by side effects, but many people have a much more manageable experience.  And even with my "outlier" case, I did have at least a week or so out of every cycle (mine was chemo every three weeks) when I felt decent and was able to live quite normally.  We took a lot of weekend trips when I did chemo, despite feeling crappy at other times.

    And the typical first chemo for colon cancer would be FOLFOX (two drugs, 5-fu and oxylaplatin); if your mom is on something different, side effects may vary.  But typically you would experience nausea and diarrhea, fatigue, and neuropathy (numbness and tingling in the hands and legs).  You can also get this weird cold sensitivity in your mouth and hands that makes it pretty much impossible to consume cold drinks or get stuff out of the fridge with bare hands (I wore thin gloves a lot).

    But they will give your mom a lot of drugs to help with these side effects, and she should take them religiously.  The key to avoiding a complete wipe-out is staying on top of the symptoms before they get too bad.  And it's also important to stay in communication with her doctor.  Dehydration is a common problem, and she will be able to get IV fluids at her clinic, so long as she lets her team know what is going on.   I could have avoided a couple of trips to the ER if I had known in advance to call my doctor if I started to feel dehydrated.

    Once she gets started on treatment, you will no doubt have more questions...and we will have more advice!  We've all been through this, and your mom can get through too.

    Hugs to you both~Ann Alexandria

  • Cammie88
    Cammie88 Member Posts: 19

    Chemo is by no means fun,

    but it is doable.  I've known a number of people who worked while doing it.  Full disclosure...I personally got hit hard by side effects, but many people have a much more manageable experience.  And even with my "outlier" case, I did have at least a week or so out of every cycle (mine was chemo every three weeks) when I felt decent and was able to live quite normally.  We took a lot of weekend trips when I did chemo, despite feeling crappy at other times.

    And the typical first chemo for colon cancer would be FOLFOX (two drugs, 5-fu and oxylaplatin); if your mom is on something different, side effects may vary.  But typically you would experience nausea and diarrhea, fatigue, and neuropathy (numbness and tingling in the hands and legs).  You can also get this weird cold sensitivity in your mouth and hands that makes it pretty much impossible to consume cold drinks or get stuff out of the fridge with bare hands (I wore thin gloves a lot).

    But they will give your mom a lot of drugs to help with these side effects, and she should take them religiously.  The key to avoiding a complete wipe-out is staying on top of the symptoms before they get too bad.  And it's also important to stay in communication with her doctor.  Dehydration is a common problem, and she will be able to get IV fluids at her clinic, so long as she lets her team know what is going on.   I could have avoided a couple of trips to the ER if I had known in advance to call my doctor if I started to feel dehydrated.

    Once she gets started on treatment, you will no doubt have more questions...and we will have more advice!  We've all been through this, and your mom can get through too.

    Hugs to you both~Ann Alexandria

    hi Ann Alexandria,
     
    Those or

    hi Ann Alexandria,

     

    Those or the two Chemo drugs her onc. talked about today.  He told her she will wear a pump for 2 days out of every 2 weeks.  He told her she could take it in pill form but she is not good at talking large pills.  How did you take it if I may ask.  I will make sure she takes the meds to combat the side effects.  She hasn't said in so many words, but I think that is her biggest worry!  thanks so muchtoo about the info of possible cold side effects and dehydration.  Knowledge is huge and I can't thank everyone enough.  I know everyone is different, but the more we know before and what might happen will certainly ease some of the anxiety!

     

    Christie

  • Cammie88
    Cammie88 Member Posts: 19

    Chemo is by no means fun,

    but it is doable.  I've known a number of people who worked while doing it.  Full disclosure...I personally got hit hard by side effects, but many people have a much more manageable experience.  And even with my "outlier" case, I did have at least a week or so out of every cycle (mine was chemo every three weeks) when I felt decent and was able to live quite normally.  We took a lot of weekend trips when I did chemo, despite feeling crappy at other times.

    And the typical first chemo for colon cancer would be FOLFOX (two drugs, 5-fu and oxylaplatin); if your mom is on something different, side effects may vary.  But typically you would experience nausea and diarrhea, fatigue, and neuropathy (numbness and tingling in the hands and legs).  You can also get this weird cold sensitivity in your mouth and hands that makes it pretty much impossible to consume cold drinks or get stuff out of the fridge with bare hands (I wore thin gloves a lot).

    But they will give your mom a lot of drugs to help with these side effects, and she should take them religiously.  The key to avoiding a complete wipe-out is staying on top of the symptoms before they get too bad.  And it's also important to stay in communication with her doctor.  Dehydration is a common problem, and she will be able to get IV fluids at her clinic, so long as she lets her team know what is going on.   I could have avoided a couple of trips to the ER if I had known in advance to call my doctor if I started to feel dehydrated.

    Once she gets started on treatment, you will no doubt have more questions...and we will have more advice!  We've all been through this, and your mom can get through too.

    Hugs to you both~Ann Alexandria

    hi Ann Alexandria,
     
    Those or

    hi Ann Alexandria,

     

    Those or the two Chemo drugs her onc. talked about today.  He told her she will wear a pump for 2 days out of every 2 weeks.  He told her she could take it in pill form but she is not good at talking large pills.  How did you take it if I may ask.  I will make sure she takes the meds to combat the side effects.  She hasn't said in so many words, but I think that is her biggest worry!  thanks so muchtoo about the info of possible cold side effects and dehydration.  Knowledge is huge and I can't thank everyone enough.  I know everyone is different, but the more we know before and what might happen will certainly ease some of the anxiety!

     

    Christie

  • Cammie88
    Cammie88 Member Posts: 19

    Chemo is by no means fun,

    but it is doable.  I've known a number of people who worked while doing it.  Full disclosure...I personally got hit hard by side effects, but many people have a much more manageable experience.  And even with my "outlier" case, I did have at least a week or so out of every cycle (mine was chemo every three weeks) when I felt decent and was able to live quite normally.  We took a lot of weekend trips when I did chemo, despite feeling crappy at other times.

    And the typical first chemo for colon cancer would be FOLFOX (two drugs, 5-fu and oxylaplatin); if your mom is on something different, side effects may vary.  But typically you would experience nausea and diarrhea, fatigue, and neuropathy (numbness and tingling in the hands and legs).  You can also get this weird cold sensitivity in your mouth and hands that makes it pretty much impossible to consume cold drinks or get stuff out of the fridge with bare hands (I wore thin gloves a lot).

    But they will give your mom a lot of drugs to help with these side effects, and she should take them religiously.  The key to avoiding a complete wipe-out is staying on top of the symptoms before they get too bad.  And it's also important to stay in communication with her doctor.  Dehydration is a common problem, and she will be able to get IV fluids at her clinic, so long as she lets her team know what is going on.   I could have avoided a couple of trips to the ER if I had known in advance to call my doctor if I started to feel dehydrated.

    Once she gets started on treatment, you will no doubt have more questions...and we will have more advice!  We've all been through this, and your mom can get through too.

    Hugs to you both~Ann Alexandria

    hi Ann Alexandria,
     
    Those or

    hi Ann Alexandria,

     

    Those or the two Chemo drugs her onc. talked about today.  He told her she will wear a pump for 2 days out of every 2 weeks.  He told her she could take it in pill form but she is not good at talking large pills.  How did you take it if I may ask.  I will make sure she takes the meds to combat the side effects.  She hasn't said in so many words, but I think that is her biggest worry!  thanks so muchtoo about the info of possible cold side effects and dehydration.  Knowledge is huge and I can't thank everyone enough.  I know everyone is different, but the more we know before and what might happen will certainly ease some of the anxiety!

     

    Christie

  • Cammie88
    Cammie88 Member Posts: 19

    Chemo is by no means fun,

    but it is doable.  I've known a number of people who worked while doing it.  Full disclosure...I personally got hit hard by side effects, but many people have a much more manageable experience.  And even with my "outlier" case, I did have at least a week or so out of every cycle (mine was chemo every three weeks) when I felt decent and was able to live quite normally.  We took a lot of weekend trips when I did chemo, despite feeling crappy at other times.

    And the typical first chemo for colon cancer would be FOLFOX (two drugs, 5-fu and oxylaplatin); if your mom is on something different, side effects may vary.  But typically you would experience nausea and diarrhea, fatigue, and neuropathy (numbness and tingling in the hands and legs).  You can also get this weird cold sensitivity in your mouth and hands that makes it pretty much impossible to consume cold drinks or get stuff out of the fridge with bare hands (I wore thin gloves a lot).

    But they will give your mom a lot of drugs to help with these side effects, and she should take them religiously.  The key to avoiding a complete wipe-out is staying on top of the symptoms before they get too bad.  And it's also important to stay in communication with her doctor.  Dehydration is a common problem, and she will be able to get IV fluids at her clinic, so long as she lets her team know what is going on.   I could have avoided a couple of trips to the ER if I had known in advance to call my doctor if I started to feel dehydrated.

    Once she gets started on treatment, you will no doubt have more questions...and we will have more advice!  We've all been through this, and your mom can get through too.

    Hugs to you both~Ann Alexandria

    hi Ann Alexandria,
     
    Those or

    hi Ann Alexandria,

     

    Those or the two Chemo drugs her onc. talked about today.  He told her she will wear a pump for 2 days out of every 2 weeks.  He told her she could take it in pill form but she is not good at talking large pills.  How did you take it if I may ask.  I will make sure she takes the meds to combat the side effects.  She hasn't said in so many words, but I think that is her biggest worry!  thanks so muchtoo about the info of possible cold side effects and dehydration.  Knowledge is huge and I can't thank everyone enough.  I know everyone is different, but the more we know before and what might happen will certainly ease some of the anxiety!

     

    Christie

  • Cammie88
    Cammie88 Member Posts: 19

    It sounds like they got it

    It sounds like they got it all. That is a good sign. Hopefully it will never return or at least give her several years NED (No Evidence of Disease).

    BTW, I am an 8 year stage IV survivor who is currently NED. Hope that helps.

    hey Janderson!!
    the more I

    hey Janderson!!

    the more I read, the more I am encouraged.  so happy for you and all who are survivors.  And yes, IT HELPS!!!  :)

    Christie

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    I had the pump,

    connected and infused on Tuesdays, removed on Thursdays.  Your mom will need to be there for several hours the first day, only a quick visit on disconnect day.  I found that I didn't feel too sick those three days, it was on the weekend that I got really sick.  By the following weekend I would be feeling better, and have a pretty good week after that.  But that was on a 3 week cycle.  I wonder why they want to do it in 2 weeks?  If it's the same dosage of chemo that I got, it seems like it won't leave much time for recovery.  Might be worth asking about, as everyone at  my clinic was on the same cycle that I was with this particular treatment.

    One other thing to keep an eye on...the neuropathy caused by the oxylaplatin can be bad, and long-lasting even after tx ends.  My doc said to tell him if it got to the point where it wasn't going away toward the end of the cycle, and he would reduce the dosage, or even remove it all together for the last few cycles.  It apparently only accounts for about a 5% difference in outcomes, and the long-term neuropathy can be really bad.  I think it's one of the symptoms I hear mentioned most often on these forums...it really bothers people when it hangs on for months or even years.

    Will she have someone to drive her to and from chemo?  That's really helpful if available.

    And I was also wondeirng if they had confirmed that the "soccer ball" sized tumor was actually a met.  Those giant ovarian tumors are often benign, in my experience, so I was just wondering if they had done the testing on it to confirm things.

    ETA that I'm also stage 4, NED for 21 months (knock on wood).  It can happen, so stay as hopeful as you can.

  • Cammie88
    Cammie88 Member Posts: 19

    I had the pump,

    connected and infused on Tuesdays, removed on Thursdays.  Your mom will need to be there for several hours the first day, only a quick visit on disconnect day.  I found that I didn't feel too sick those three days, it was on the weekend that I got really sick.  By the following weekend I would be feeling better, and have a pretty good week after that.  But that was on a 3 week cycle.  I wonder why they want to do it in 2 weeks?  If it's the same dosage of chemo that I got, it seems like it won't leave much time for recovery.  Might be worth asking about, as everyone at  my clinic was on the same cycle that I was with this particular treatment.

    One other thing to keep an eye on...the neuropathy caused by the oxylaplatin can be bad, and long-lasting even after tx ends.  My doc said to tell him if it got to the point where it wasn't going away toward the end of the cycle, and he would reduce the dosage, or even remove it all together for the last few cycles.  It apparently only accounts for about a 5% difference in outcomes, and the long-term neuropathy can be really bad.  I think it's one of the symptoms I hear mentioned most often on these forums...it really bothers people when it hangs on for months or even years.

    Will she have someone to drive her to and from chemo?  That's really helpful if available.

    And I was also wondeirng if they had confirmed that the "soccer ball" sized tumor was actually a met.  Those giant ovarian tumors are often benign, in my experience, so I was just wondering if they had done the testing on it to confirm things.

    ETA that I'm also stage 4, NED for 21 months (knock on wood).  It can happen, so stay as hopeful as you can.

    So I haven't been on the site

    So I haven't been on the site at all because mom came home from the hospital on September 7th & had her stapples removed yesterday, the 16th.  Mom is doing very well and I want to thank everyone who has posted back to me and supported my mom and me to this point!  Anyway, mom and I were a little shocked when at the surgeons office yesterday, we were told that 5 of 15 lymph nodes removed were cancerous.  Right after the surgery, I was told they were positive for "indicators", not positive for cancer.  Anyway, I guess we were shocked when he said that meant that there is a 40-60% chance that the cancer will spread.  Mom & I still have an extremely positive attitude, but I have to admit, now having numbers makes it harder and my extended family, to put it bluntly, is freaking out. 

    Has anyone been in this situation?  I know that once diagnosed with cancer, you have it and it is never gone, and you look for NED on tests.  I guess I don't exactly know what I am asking...maybe, I am asking, does that percentage make a difference?  Would she still be treated with Chemo if there was no cancer in the lymph nodes???

     

    Thanks & blessings to all<

    Christie

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Cammie88 said:

    So I haven't been on the site

    So I haven't been on the site at all because mom came home from the hospital on September 7th & had her stapples removed yesterday, the 16th.  Mom is doing very well and I want to thank everyone who has posted back to me and supported my mom and me to this point!  Anyway, mom and I were a little shocked when at the surgeons office yesterday, we were told that 5 of 15 lymph nodes removed were cancerous.  Right after the surgery, I was told they were positive for "indicators", not positive for cancer.  Anyway, I guess we were shocked when he said that meant that there is a 40-60% chance that the cancer will spread.  Mom & I still have an extremely positive attitude, but I have to admit, now having numbers makes it harder and my extended family, to put it bluntly, is freaking out. 

    Has anyone been in this situation?  I know that once diagnosed with cancer, you have it and it is never gone, and you look for NED on tests.  I guess I don't exactly know what I am asking...maybe, I am asking, does that percentage make a difference?  Would she still be treated with Chemo if there was no cancer in the lymph nodes???

     

    Thanks & blessings to all<

    Christie

    The number of nodes involved

    does change your mom's staging, and therefore the recommended treatment.  You should ask your mom's doc (or have her ask) about this.  They will be able to tell you more exactly.  But if the tumor that you mentioned that was so large is in fact made up of colon cancer cells, then she's automatically stage 4.  Did you ever find out about this?  It makes a big difference in terms of treatment and prognosis.  And as far as I know, chemo is pretty standard when lymph nodes are involved, but again your mom's doc should be able to tell you and your mom what to expect.

    Keep us posted!  AA

    PS I had 5 of 38 nodes involved, so NED can certainly be achieved, even when the lymph system is involved.

  • daisey1
    daisey1 Member Posts: 1
    Cammie88 said:

    Hello again friends,
    I wanted

    Hello again friends,

    I wanted to update you on mom and get more feedback.  One of her surgeons was in today and said she came thru surgery with flying colors and they are confident they got all of the cancer (2 colon tumors and mets to right ovary).  She was started back on a liquid diet today which she is extremely happy about!!!!  She also met her oncologist, who she seems to like (I was not here) and he told her Chemo once every 2 weeks for about 6 months.  I guess that works out to about 12 treatments.  Has anyone else had it in this manner?   Also, for when we go for the office visit in about 3 weeks, could you all throw out some names of Chemo drugs that you have had, side effects etc?  Mom seems more concerned about the Chemo than the diagnosis itself.  

    Thank you to all of my new friends & those to come,

    Christie

    PS:  just realized I never told you mom's name is Julie.

    Chemo for Colon Cancer

    I was diagnosed with stage 4 colon cancer in June 2013. It has spread to abdominal cavity, and have a very large mass which is not removable.  I too had a colectomy,

    removed right side of colon, cecum, appendix etc. and was reconnected.  I had surgery on July 1, started chemo on August 8.

     

    I am taking Irinotecan, 5FU and lucovoran.  The irinotecan, lucovoran are done through picc line in arm every two weeks in chemo clinic, then I come home with a tube of 5Fu for 2 days. This treatment is for 6 months every 2 weeks. The chemo drugs make me nauseated for about 5 days, very weak and tired. I was on oxaliplatin which had horrible side effects, they had to change it to Irinotean.  I have had 3 treatments and am going in for 4th treatment next week.  Starting to lose some hair at this point.  I have a very possitive attitude and  very supportive family and friends that help me get through this.

    I went in to chemo thinking the side effect would be worse than they are, so tell you mom to hang in there.


    Darlene

  • Cammie88
    Cammie88 Member Posts: 19

    The number of nodes involved

    does change your mom's staging, and therefore the recommended treatment.  You should ask your mom's doc (or have her ask) about this.  They will be able to tell you more exactly.  But if the tumor that you mentioned that was so large is in fact made up of colon cancer cells, then she's automatically stage 4.  Did you ever find out about this?  It makes a big difference in terms of treatment and prognosis.  And as far as I know, chemo is pretty standard when lymph nodes are involved, but again your mom's doc should be able to tell you and your mom what to expect.

    Keep us posted!  AA

    PS I had 5 of 38 nodes involved, so NED can certainly be achieved, even when the lymph system is involved.

    Thanks AA....We are going to

    Thanks AA....We are going to the oncologist for the first time tomorrow to set up a plan.  I have my questions all written down and will notleave without answers.

  • Cammie88
    Cammie88 Member Posts: 19
    daisey1 said:

    Chemo for Colon Cancer

    I was diagnosed with stage 4 colon cancer in June 2013. It has spread to abdominal cavity, and have a very large mass which is not removable.  I too had a colectomy,

    removed right side of colon, cecum, appendix etc. and was reconnected.  I had surgery on July 1, started chemo on August 8.

     

    I am taking Irinotecan, 5FU and lucovoran.  The irinotecan, lucovoran are done through picc line in arm every two weeks in chemo clinic, then I come home with a tube of 5Fu for 2 days. This treatment is for 6 months every 2 weeks. The chemo drugs make me nauseated for about 5 days, very weak and tired. I was on oxaliplatin which had horrible side effects, they had to change it to Irinotean.  I have had 3 treatments and am going in for 4th treatment next week.  Starting to lose some hair at this point.  I have a very possitive attitude and  very supportive family and friends that help me get through this.

    I went in to chemo thinking the side effect would be worse than they are, so tell you mom to hang in there.


    Darlene

    Thank you Darlene,  all of

    Thank you Darlene,  all of the information you are all provding me with is helping with all of the building anxiety. 

  • PatchAdams
    PatchAdams Member Posts: 271
    Cammie88 said:

    So I haven't been on the site

    So I haven't been on the site at all because mom came home from the hospital on September 7th & had her stapples removed yesterday, the 16th.  Mom is doing very well and I want to thank everyone who has posted back to me and supported my mom and me to this point!  Anyway, mom and I were a little shocked when at the surgeons office yesterday, we were told that 5 of 15 lymph nodes removed were cancerous.  Right after the surgery, I was told they were positive for "indicators", not positive for cancer.  Anyway, I guess we were shocked when he said that meant that there is a 40-60% chance that the cancer will spread.  Mom & I still have an extremely positive attitude, but I have to admit, now having numbers makes it harder and my extended family, to put it bluntly, is freaking out. 

    Has anyone been in this situation?  I know that once diagnosed with cancer, you have it and it is never gone, and you look for NED on tests.  I guess I don't exactly know what I am asking...maybe, I am asking, does that percentage make a difference?  Would she still be treated with Chemo if there was no cancer in the lymph nodes???

     

    Thanks & blessings to all<

    Christie

    Cammie

    I had 5 out of 17 nodes positive for cancer back in Jan. 2009.  I have had a recurrence but it was found early and surgically removed.

    Your mom is 70. With surgery and chemo, she might easily beat this and die of old age.  Don't give up hope!  

  • danker
    danker Member Posts: 1,276 Member
    Cammie88 said:

    hi Ann Alexandria,
     
    Those or

    hi Ann Alexandria,

     

    Those or the two Chemo drugs her onc. talked about today.  He told her she will wear a pump for 2 days out of every 2 weeks.  He told her she could take it in pill form but she is not good at talking large pills.  How did you take it if I may ask.  I will make sure she takes the meds to combat the side effects.  She hasn't said in so many words, but I think that is her biggest worry!  thanks so muchtoo about the info of possible cold side effects and dehydration.  Knowledge is huge and I can't thank everyone enough.  I know everyone is different, but the more we know before and what might happen will certainly ease some of the anxiety!

     

    Christie

    chemo pump

     I had a chemo pump for 5 weeks giving me fu5 24/7.  I was also getting radiation M-F .  Only side effect was diarrhea which was controlled with LOMOTIL.  Good luck to her & you!!!