started round 2 chemo yesterday

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bigCrandy
bigCrandy Member Posts: 75
edited March 2014 in Colorectal Cancer #1
hello to all my fellow cancer troopers. I'm new, just registered today. Not new to cancer though. I had a colon resection back in April 07, had to take my spleen out too. Incision got infected in ICU. Tumor was 4.5cm by 4.0cm at descending/sigmoid area. They took out 14 inches and 20 out of 22 lymph nodes tested positive, stage 3c. Took 6 months of FolFox-5fu,leucovorin,oxiliplatin, every other week-12 treatments, on the pump for 46 hours. Got neuropathy bad in figers and bottoms of feet, still have it. Finished last chemo in Nov. 07, took CT-PET scans in Dec.07. Both came back negative for cancer.(WOW) Continued CT scans every three months, even had mediport removed in July because it was completely plugged, that was a nice milestone. Anyway, my Sept. CT didn't come back very good, lymph nodes around abdominal aorta very suspicious. I had PET scan following week which confirmed lymph node cancer in that area and one at the base of neck. I was officially NED for 9 months. Just had a new Smart Port implanted yesterday morning and went straight to oncology for the second 6 month round of chemo. This time they are using FolFiri-5fu,leucovorin,irinotecan plus Avastin. Also once again on the pump. The irinotecan caused bad cramping and diarrhea while it was being given but they gave me a shot of something and it rapidly went away. At least I don't have all ther horrible side effects of oxiliplatin, thank God. Everybody called me a walking miracle because of how I fought back and regained my strength and weight back. I felt great and right now I still do. My hair didn't completely fall out, only thinned badly and turned really gray, course I'm 52 so that's no surprise. I missed 6 months of work the last time but I'm gonna try my best to work through this. I'm a landscaper and lawn maintenance person and love working outside. I pray for all of you and ask God to bless each of us. Have a positive attitude and a strong FAITH and never give up. Stay together, love Randy

Comments

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Go, Randy!
    Randy, I'm sorry you have to go through chemo again, but it sounds like you have the most fabulous attitude. I think you'll beat this thing! Keep us posted on your progress!

    Love,
    Gail (I like that you're a person who signs "love,too."
  • kimby
    kimby Member Posts: 797
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    Hi Randy
    We have similar stories and I start round 2 chemo today (just got hooked up with pre-meds) Diagnosed IIIc 8/07, surgery,6 months FOLFOX, reversal surgery, port out in May/08 due to complications, ned 2 months. Now, mets to liver/lung and starting FOLFIRI w/Erbitux to hopefully become resectable.

    Best wishes and enjoy the ride, cuz you gotta have fun along the way!

    Kimby
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    Hang in there!
    Hey Randy... as much as I wish I didn't have to say it, "Welcome to the Club"! It would be much better if we didn't need to have a club but hey, we are all in this together, so what the heck, we may as well make the best of it and look at the positives. We get to make new friends from all over the place... friends who all know exactly what we are going through and not just giving lip service.

    Wow... your story is almost exactly the same as mine. Diagnosed in Dec 2006, surgery, 8 months of chemo, and 6 weeks of radiation. The chemo ended in Oct 2007, but in Dec 2007 my CEA was slightly elevated. I took off for Hawaii, came back at the end of January, CEA was elevated a bit more. Went for a PET scan and voila... they found my right adrenal gland and a nodule in my lung both lit up the scan. More tests and biopsies, etc. and it was decided that we surgically remove the adrenal gland which we did in June/08. Now we are working on the lung... but there are a few more suspicious small spots, so are working out what the best treatment would be... looks like 6 more rounds of chemo and then surgery.

    So, the battle isn't quite over yet, but darn it all anyways... we shall be the winner! I'm very competitive and darned if I'm going to let these nasty little critters beat me! The critters must die!! :D

    I haven't gone back to work, myself, but that's not to say I'm not busy. OMG... I have no idea how I managed to hold down a full time job AND do all the things I love doing (I'm very involved in the theatre community in my city). So, I get to pick and choose doing the things I love and enjoy... and work (ok, volunteer) my hours. Talk about taking the stress away!! That was one of the things I insisted on as part of my battle strategy... to get rid of any kind of stress that may get in the way of healing. So, rather than work to live, I am now living to work and that work now becomes everything I love doing. Of course, to put that strategy into play, I happen to be extremely lucky in that the company I have worked for for the past 35 years, has a good Long Term Disability Insurance benefit plan. So, as long as I need to, I can take my time and just work on what is right for my healing.

    But in your case, it sounds like you love your outdoor job... so that's like me loving my theatre involvement. Doing what you love to do is what life is all about, so go for it!! At the same time, if you find it too much and you are just too tired, accept that and don't punish yourself. It's not that your body is at fault, it's all the darn pharmaceuticals and poisons we have to put into our bodies to make them well again!

    I look forward to seeing more posts of yours!
  • msccolon
    msccolon Member Posts: 1,917 Member
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    FOLFIRI
    Randy, sorry to see you are back on the ride. I did the same as you, and the atropine they give you for the cramps does the job. I also had them add Sandostatin after having a very bad episode with diarrhea. I did lose most of my hair due to adding Emend and Decadron to control nausea, but it was well worth it! Most of the hair that grew back is white, but it dyes just fine! I have been able to work through treatments (off and on and the boss is very understanding about my schedule). I work out of my home, software development, so i can pretty much work whenever I want which helped a great deal. Some weeks I was lucky to get in 23 hours, but that was ok too. I learned to sleep when my body needed it and it made the treatments go so much better. The cycle of side effects were fairly predictable and for the most part manageable and I don't have any lingering affects. It did take a while for my intestines to tolerate "normal" foods after completing treatment, but I can pretty much eat what I want now without having to know where the closest toilet is. God be with you as you march on.
    Mary
  • bigCrandy
    bigCrandy Member Posts: 75
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    Hang in there!
    Hey Randy... as much as I wish I didn't have to say it, "Welcome to the Club"! It would be much better if we didn't need to have a club but hey, we are all in this together, so what the heck, we may as well make the best of it and look at the positives. We get to make new friends from all over the place... friends who all know exactly what we are going through and not just giving lip service.

    Wow... your story is almost exactly the same as mine. Diagnosed in Dec 2006, surgery, 8 months of chemo, and 6 weeks of radiation. The chemo ended in Oct 2007, but in Dec 2007 my CEA was slightly elevated. I took off for Hawaii, came back at the end of January, CEA was elevated a bit more. Went for a PET scan and voila... they found my right adrenal gland and a nodule in my lung both lit up the scan. More tests and biopsies, etc. and it was decided that we surgically remove the adrenal gland which we did in June/08. Now we are working on the lung... but there are a few more suspicious small spots, so are working out what the best treatment would be... looks like 6 more rounds of chemo and then surgery.

    So, the battle isn't quite over yet, but darn it all anyways... we shall be the winner! I'm very competitive and darned if I'm going to let these nasty little critters beat me! The critters must die!! :D

    I haven't gone back to work, myself, but that's not to say I'm not busy. OMG... I have no idea how I managed to hold down a full time job AND do all the things I love doing (I'm very involved in the theatre community in my city). So, I get to pick and choose doing the things I love and enjoy... and work (ok, volunteer) my hours. Talk about taking the stress away!! That was one of the things I insisted on as part of my battle strategy... to get rid of any kind of stress that may get in the way of healing. So, rather than work to live, I am now living to work and that work now becomes everything I love doing. Of course, to put that strategy into play, I happen to be extremely lucky in that the company I have worked for for the past 35 years, has a good Long Term Disability Insurance benefit plan. So, as long as I need to, I can take my time and just work on what is right for my healing.

    But in your case, it sounds like you love your outdoor job... so that's like me loving my theatre involvement. Doing what you love to do is what life is all about, so go for it!! At the same time, if you find it too much and you are just too tired, accept that and don't punish yourself. It's not that your body is at fault, it's all the darn pharmaceuticals and poisons we have to put into our bodies to make them well again!

    I look forward to seeing more posts of yours!

    You Got the Right Attitude
    I really like you attitude and believe me that's what keeps me going. Cancer is a tough, sly, determined nasty son of gun but humans can match their toughness, determination, and slyness. They want a long term battle and we will give them our best. Live Strong and Fear Nothing! It's a challenge and a journey and in today's world we can win and we must. Keep it up! and Never give up! love, Randy
  • bigCrandy
    bigCrandy Member Posts: 75
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    msccolon said:

    FOLFIRI
    Randy, sorry to see you are back on the ride. I did the same as you, and the atropine they give you for the cramps does the job. I also had them add Sandostatin after having a very bad episode with diarrhea. I did lose most of my hair due to adding Emend and Decadron to control nausea, but it was well worth it! Most of the hair that grew back is white, but it dyes just fine! I have been able to work through treatments (off and on and the boss is very understanding about my schedule). I work out of my home, software development, so i can pretty much work whenever I want which helped a great deal. Some weeks I was lucky to get in 23 hours, but that was ok too. I learned to sleep when my body needed it and it made the treatments go so much better. The cycle of side effects were fairly predictable and for the most part manageable and I don't have any lingering affects. It did take a while for my intestines to tolerate "normal" foods after completing treatment, but I can pretty much eat what I want now without having to know where the closest toilet is. God be with you as you march on.
    Mary

    Thank you for your ecouraging words
    I will continue to march on and God will be with me throughout the journey. My health now is better than before I got sick one and half years ago. My digestive system is better now than it was 30 years ago. I'm 52 but I can still do my job better than ever, I just have these pesty recurring lymph nodes that like to cause trouble, we will see about that(Grrrrr). They ain't seen nothing yet, it's just another minor setback and with God's help I'll be back in 6 months. Thanks for being such a positive fighter. We know Attitude is everything in life. Thanks, love Randy
  • pamness
    pamness Member Posts: 524 Member
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    msccolon said:

    FOLFIRI
    Randy, sorry to see you are back on the ride. I did the same as you, and the atropine they give you for the cramps does the job. I also had them add Sandostatin after having a very bad episode with diarrhea. I did lose most of my hair due to adding Emend and Decadron to control nausea, but it was well worth it! Most of the hair that grew back is white, but it dyes just fine! I have been able to work through treatments (off and on and the boss is very understanding about my schedule). I work out of my home, software development, so i can pretty much work whenever I want which helped a great deal. Some weeks I was lucky to get in 23 hours, but that was ok too. I learned to sleep when my body needed it and it made the treatments go so much better. The cycle of side effects were fairly predictable and for the most part manageable and I don't have any lingering affects. It did take a while for my intestines to tolerate "normal" foods after completing treatment, but I can pretty much eat what I want now without having to know where the closest toilet is. God be with you as you march on.
    Mary

    Hair loss ???
    I used Emend and decadron to control nause during chemo - folfox - I wasn't aware or even told that hair was an issue with nausea control meds. Goodness knows, I had all that are available. I am currently 15 mos ned - no hair loss (not a big priority) but I am curious to know about Emend and decadron - as they pertain to hair loss. I actually experienced a growth spurt in my fingernails and hair - I figured it was due to the leucovorin.

    Am I just wierd?

    Pam
  • msccolon
    msccolon Member Posts: 1,917 Member
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    pamness said:

    Hair loss ???
    I used Emend and decadron to control nause during chemo - folfox - I wasn't aware or even told that hair was an issue with nausea control meds. Goodness knows, I had all that are available. I am currently 15 mos ned - no hair loss (not a big priority) but I am curious to know about Emend and decadron - as they pertain to hair loss. I actually experienced a growth spurt in my fingernails and hair - I figured it was due to the leucovorin.

    Am I just wierd?

    Pam

    hair loss
    Pam, just goes to show you that we are all different and that we don't all experience the same side effects (thank God we don't experience all the side effects they list on those sheets!). I actually didn't realize that Emend and Decadron might speed up the hair loss until it began and I decided to check on it. And as far as nails, I usually have very strong, hard nails, but chemo has managed to damage them. I got the dark streaking and brittleness that is just now finally growing out. Another month and all of my nails should be chemo-free! Really, only my thumbs are left with the residual at their tips.
    Mary
  • jenhopesprays
    jenhopesprays Member Posts: 128 Member
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    Hey Randy,
    I'm sorry your

    Hey Randy,

    I'm sorry your back in the saddle again but I'm sure glad you are sharing it with us.

    I have a PET/CT on Monday and am working up a healthy dose of scanxiety.

    I love your attitude and know it will serve you and your recovery well.


    Prayers are coming your way chemosabe,

    Jennifer
  • bigCrandy
    bigCrandy Member Posts: 75
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    Hey Randy,
    I'm sorry your

    Hey Randy,

    I'm sorry your back in the saddle again but I'm sure glad you are sharing it with us.

    I have a PET/CT on Monday and am working up a healthy dose of scanxiety.

    I love your attitude and know it will serve you and your recovery well.


    Prayers are coming your way chemosabe,

    Jennifer

    Hey Thanks for the prayers
    The power of prayer! it really does work. I get my pump taken off this afternoon which is always nice.(freedom) I call it my little buddy cause it's with me for 2 days and keeps me up at night. So for, this session is going real well. I have a good appetite and have been eating normally. I certainly do not miss the oxilipatin from the last chemo. It caused me a lot of problems with eating and neuropathy(which I still have and probably always will have) At least I can eat and drink cold things OK and my taste buds are normal, that's a big improvement over the previous chemo treatment. Thanks to you and everyone else out there this journey will be much more tolerable and enjoyable. God Bless each of you! thanks, love, Randy
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    bigCrandy said:

    Hey Thanks for the prayers
    The power of prayer! it really does work. I get my pump taken off this afternoon which is always nice.(freedom) I call it my little buddy cause it's with me for 2 days and keeps me up at night. So for, this session is going real well. I have a good appetite and have been eating normally. I certainly do not miss the oxilipatin from the last chemo. It caused me a lot of problems with eating and neuropathy(which I still have and probably always will have) At least I can eat and drink cold things OK and my taste buds are normal, that's a big improvement over the previous chemo treatment. Thanks to you and everyone else out there this journey will be much more tolerable and enjoyable. God Bless each of you! thanks, love, Randy

    Good going!
    Hey Randy, that's great to know this cycle went well for you! I know when I was on the pump, I gave it a name... Myrtle. Myrtle was with me for 36 hours every two weeks and sometimes I told her that it was a real pain having her follow me around, EVERYWHERE! The worst of it all is I don't have a collection of belts... I only have one belt and it is multi-coloured stripes in burgandy, pink and white. In other words, a belt that doesn't go with ANY outfit I currently have!! Arrrrrrgh!! In the next few days, I'm going belt shopping so that when I start up the chemo again, I'll have a selection of belts. And I'll give the pump a new name because I really don't want Myrtle to reappear

    Speaking of pumps... how do you wear yours (and anyone else)? I put mine in a water bottle pouch/carrier and then that pouch gets put on a belt. The inconvenience of course is when one is changing clothes... but I bet that is a problem no matter how one carries it around. Has anyone got any other ideas how to carry the pump around?

    Anywho... I'm hoping I'm not going to have to go on the oxilipatin because you are so right... the side affects are not fun in the least! But if that is what is going to work, then yes, I'll grin and bare it and go for whatever is going to do the trick!

    Keep us posted on how your journey goes, Randy!!

    Hugggggs,

    Cheryl
  • kimby
    kimby Member Posts: 797
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    Good going!
    Hey Randy, that's great to know this cycle went well for you! I know when I was on the pump, I gave it a name... Myrtle. Myrtle was with me for 36 hours every two weeks and sometimes I told her that it was a real pain having her follow me around, EVERYWHERE! The worst of it all is I don't have a collection of belts... I only have one belt and it is multi-coloured stripes in burgandy, pink and white. In other words, a belt that doesn't go with ANY outfit I currently have!! Arrrrrrgh!! In the next few days, I'm going belt shopping so that when I start up the chemo again, I'll have a selection of belts. And I'll give the pump a new name because I really don't want Myrtle to reappear

    Speaking of pumps... how do you wear yours (and anyone else)? I put mine in a water bottle pouch/carrier and then that pouch gets put on a belt. The inconvenience of course is when one is changing clothes... but I bet that is a problem no matter how one carries it around. Has anyone got any other ideas how to carry the pump around?

    Anywho... I'm hoping I'm not going to have to go on the oxilipatin because you are so right... the side affects are not fun in the least! But if that is what is going to work, then yes, I'll grin and bare it and go for whatever is going to do the trick!

    Keep us posted on how your journey goes, Randy!!

    Hugggggs,

    Cheryl

    Fred
    My pump this time around is Fred. I know he's a man (sorry guys) because he wants to shower with me, sleep with me and is a PITA! I carry him in a fanny pack supplied by the pump company - quite the fashion statment right there. I just keep the strap short and throw it over my shoulder. The belt thing just doesn't cut it for me!

    Kimby
  • msccolon
    msccolon Member Posts: 1,917 Member
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    Good going!
    Hey Randy, that's great to know this cycle went well for you! I know when I was on the pump, I gave it a name... Myrtle. Myrtle was with me for 36 hours every two weeks and sometimes I told her that it was a real pain having her follow me around, EVERYWHERE! The worst of it all is I don't have a collection of belts... I only have one belt and it is multi-coloured stripes in burgandy, pink and white. In other words, a belt that doesn't go with ANY outfit I currently have!! Arrrrrrgh!! In the next few days, I'm going belt shopping so that when I start up the chemo again, I'll have a selection of belts. And I'll give the pump a new name because I really don't want Myrtle to reappear

    Speaking of pumps... how do you wear yours (and anyone else)? I put mine in a water bottle pouch/carrier and then that pouch gets put on a belt. The inconvenience of course is when one is changing clothes... but I bet that is a problem no matter how one carries it around. Has anyone got any other ideas how to carry the pump around?

    Anywho... I'm hoping I'm not going to have to go on the oxilipatin because you are so right... the side affects are not fun in the least! But if that is what is going to work, then yes, I'll grin and bare it and go for whatever is going to do the trick!

    Keep us posted on how your journey goes, Randy!!

    Hugggggs,

    Cheryl

    wearing that pump
    Cheryl, when I had the one that didn't actually make any noise, just a plastic bottle with a balloon inside, i made a pouch for it, with an attached strap that i could either wear around my waist or around my neck. When it was the pump that looked like a large calculator, it came with it's own cover and nylon belt that i wore around my waist. I didn't bother making anything myself for it, figured black went with everything!
    Mary
  • bigCrandy
    bigCrandy Member Posts: 75
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    Good going!
    Hey Randy, that's great to know this cycle went well for you! I know when I was on the pump, I gave it a name... Myrtle. Myrtle was with me for 36 hours every two weeks and sometimes I told her that it was a real pain having her follow me around, EVERYWHERE! The worst of it all is I don't have a collection of belts... I only have one belt and it is multi-coloured stripes in burgandy, pink and white. In other words, a belt that doesn't go with ANY outfit I currently have!! Arrrrrrgh!! In the next few days, I'm going belt shopping so that when I start up the chemo again, I'll have a selection of belts. And I'll give the pump a new name because I really don't want Myrtle to reappear

    Speaking of pumps... how do you wear yours (and anyone else)? I put mine in a water bottle pouch/carrier and then that pouch gets put on a belt. The inconvenience of course is when one is changing clothes... but I bet that is a problem no matter how one carries it around. Has anyone got any other ideas how to carry the pump around?

    Anywho... I'm hoping I'm not going to have to go on the oxilipatin because you are so right... the side affects are not fun in the least! But if that is what is going to work, then yes, I'll grin and bare it and go for whatever is going to do the trick!

    Keep us posted on how your journey goes, Randy!!

    Hugggggs,

    Cheryl

    Over the shoulder pump
    Hi, Cheryl, the pump I get is the same as last chemo, the big, black one that looks like an old cassette player with a shoulder harness or strap. Makes a pumping noise every 60 seconds with a flashing green light, it lasts about 46 hours, filled with 5-fu. You're right about he oxiliplatin, it must really work because the side effects are the worst. My Onc didn't want to damage my neuropathy any more so he replaced it with irinotecan and avastin. I definitely like this mixture better, at least so far. I'm ready for the challenge and no matter what happens, I know God is in control. My prayers go out to you and everyone else that share this nasty disease. Stay strong, love, Randy
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    bigCrandy said:

    Over the shoulder pump
    Hi, Cheryl, the pump I get is the same as last chemo, the big, black one that looks like an old cassette player with a shoulder harness or strap. Makes a pumping noise every 60 seconds with a flashing green light, it lasts about 46 hours, filled with 5-fu. You're right about he oxiliplatin, it must really work because the side effects are the worst. My Onc didn't want to damage my neuropathy any more so he replaced it with irinotecan and avastin. I definitely like this mixture better, at least so far. I'm ready for the challenge and no matter what happens, I know God is in control. My prayers go out to you and everyone else that share this nasty disease. Stay strong, love, Randy

    Over the Shoulder Pump
    Ahhhh.... ok, I don't think I've seen one of those over the shoulder pumps. At least, I haven't had one myself. The only one I have had is the one that looks like the little baby bottle with the balloon of chemo inside and I wore it for 36 hours. Of course, I'm not sure which one I'll get next... that appt. to discuss this is not until Oct 10th.

    I'm assuming that the shoulder pump is more inconvenient and cumbersome?
  • polarprincess
    polarprincess Member Posts: 202 Member
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    pump
    Glad to hear your second chemo is going better. I think I would do so much better without the OXY as well. It is a nasty nasty drug.
    As far as the discussion about the pump.. i went to walmart and bought a cute hip length small purse with long shoulder straps that just fits the pump inside. it is really nice for when i go in public because i just string the tubing under my shirt, and adjust the purse so it fits right where my shirt ends. No one has any clue that I am on chemo which was important to me. At home, i just wear the pump like a fanny pack.
  • msccolon
    msccolon Member Posts: 1,917 Member
    Options

    Over the Shoulder Pump
    Ahhhh.... ok, I don't think I've seen one of those over the shoulder pumps. At least, I haven't had one myself. The only one I have had is the one that looks like the little baby bottle with the balloon of chemo inside and I wore it for 36 hours. Of course, I'm not sure which one I'll get next... that appt. to discuss this is not until Oct 10th.

    I'm assuming that the shoulder pump is more inconvenient and cumbersome?

    pump comparison
    Cheryl, not that either one was exactly ENJOYABLE, but I preferred the one you have as well. It wasn't as noisy, lighter, and generally less troublesome! I asked my onc nurse why they switched back to the black one and she said something about it being easier for dosing, etc. I had the black pump first time around, the balloon thing the 2nd and back to the black one the third time around. Fun!
    Mary