Adjuvant Chemo Therapy

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  • darcher
    darcher Member Posts: 304 Member
    #22
      Seems most everyone is

      Seems most everyone is getting or had an intravenous version of mop up chemo.  For what ever reason they're having me on xeloda pills again in a few weeks.  I guess it's more convenient but I still remember the side affects from before and that was for a much shorter time period. This could be for up to 6 months and at higher doses versus the month and half I had it before. I'm a little worried because I know how I got before and this is going to be longer and stronger.   

      I do think outside stresses are a major negative contributor to our condition while on it.  Even now, 2 months after the initial treatment it still impacts me to some degree although the manifestation isn't as bad as it was before.  Perhaps a lot of it is the sudden abrupt changes to our lives. I ended up with radiation burns. I hope it will fade over time. Too many bathroom trips still plague me.  There are others as well and this either caused them or puts a damper on being able to do anything about it. Ultimately, even if survived cancer takes a heavy toll. 

  • Mikenh
    Mikenh Member Posts: 777 Member
    #23
    Thanks for the information on

    Thanks for the information on the upcoming treatments. I find out my mop up this Thursday when I meet with the Dana Farber Oncologist and the type of treatment will determine where and how I have it done. The mop up Xeloda is higher dosage but do you get weeks on and off? Would that compensate for the higher dosage?

    I'm resigned to going to the bathroom every three hours or so in the middle of the night. Yesterday I ate more than normal though less than usual for Thanksgiving (I didn't eat any turkey as basically anything other than ground or minced meat passes through). I slept quite soundly as well as I was tired but I have my watch alarm set for 4:30 AM so I woke up, found the bag about 40% full and emptied it out. I'm considering setting an additional alarm at 1:00 AM. I normally just wake up at those times without the alarm - the problem is if I'm really tired and sleeping soundly and don't get up. So it's just something that I've learned to live with. I think that this bugs Jim too but what do you do outside of getting a huge and sturdy bag (do they make those)?

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #24
    Mikenh said:

    Thanks for the information on

    Thanks for the information on the upcoming treatments. I find out my mop up this Thursday when I meet with the Dana Farber Oncologist and the type of treatment will determine where and how I have it done. The mop up Xeloda is higher dosage but do you get weeks on and off? Would that compensate for the higher dosage?

    I'm resigned to going to the bathroom every three hours or so in the middle of the night. Yesterday I ate more than normal though less than usual for Thanksgiving (I didn't eat any turkey as basically anything other than ground or minced meat passes through). I slept quite soundly as well as I was tired but I have my watch alarm set for 4:30 AM so I woke up, found the bag about 40% full and emptied it out. I'm considering setting an additional alarm at 1:00 AM. I normally just wake up at those times without the alarm - the problem is if I'm really tired and sleeping soundly and don't get up. So it's just something that I've learned to live with. I think that this bugs Jim too but what do you do outside of getting a huge and sturdy bag (do they make those)?

    Maybe they make....

    night time bags just like they make night time diapers. 

    That would makes sense, don't you think? 

    All of your information is extremely helpful to those who are set to get a colostomy or iliostomy. And the info makes those of us who skipped that bullet, very grateful. 

    Tru

  • lizard44
    lizard44 Member Posts: 409 Member
    #25
    Night time usostomy pouches

    That's not a problem for me, since I have a colostomy, but I can see  where having to empty several times a night would be a real aggravation.They do make night time pouching systems, though! I remembered seeing some when I was going through my ostomy supply catalog.  Here's a link to one- with a  2 litre capacity.  https://www.coloplast.us/coloplast-urostomy-night-bag-en-us.aspx

    Grace/lizard44

  • Tunadog
    Tunadog Member Posts: 235 Member
    #26
    lizard44 said:

    Night time usostomy pouches

    That's not a problem for me, since I have a colostomy, but I can see  where having to empty several times a night would be a real aggravation.They do make night time pouching systems, though! I remembered seeing some when I was going through my ostomy supply catalog.  Here's a link to one- with a  2 litre capacity.  https://www.coloplast.us/coloplast-urostomy-night-bag-en-us.aspx

    Grace/lizard44

    Yikes!

    Two liters...

  • Mikenh
    Mikenh Member Posts: 777 Member
    #27
    Tunadog said:

    Yikes!

    Two liters...

    Yeah, kind of like a catheter

    Yeah, kind of like a catheter system. The thing is that the tubing implies that your output is fairly liquidy.

  • darcher
    darcher Member Posts: 304 Member
    #28
    Scam Alert

    Oh brother.  Someone else trying to take advantage of people in a desperate spot.   It's dried and grinded up deer placenta he's pitching.   https://www.sgstemcell.com/blog/purtier-placenta-is-another-scam/    It's being pitched as something like stem cells which, without saying so, is meant to imply it will create new growth healthy tissue.  This won't.  It's nothing more than dried and pulvervised deer meat. Stem cells have to be LIVE and human (as far as I know) and be injected into the right spot to have any affect at all.  This is crap.      

  • Nazareth
    Nazareth Member Posts: 88 Member
    #29
    airborne72 said:

    Mike - and everyone else:

    My mobility is good.  I have been driving since four days after discharge.  Not long or fast - just in town stuff.  The greater challenge is getting in and out of the vehicle.

    I have cautioned myself about gut exertions, as you described with the fire doors.  It is so easy to forget and then do somthing risky.  I may be somewhat protected from a hernia because I already have been repaired for a bilateral inguinal hernia.  They inserted a sheet of plastic mesh inside my gut to fortify my body cavity.  That mesh may be providing me some additional, and most welcomed, protection.

    My out-and-about has been drastically curtailed by this chemo.  I am housebound until I regain some strength.  Plus, I do not want to catch any viruses.

    Input vs. output.  I experienced my first bag failure last night.  I awoke to a weird sensation and immediately knew what it was.  I looked under the wet spot on my t shirt and I had a pile of effluent puddled in my navel.  What a mess!!  Cleaning up and applying a new wafer was not easy since my stoma was super active at 4 a.m.  Go figure.  Last night I ate supper earlier than ever (6:30) and I ate less.  It's just karma.  The most important thing I learned from the experience is to ALWAYS have a wafer precut and ready to go.  That menial and tactile challenging task of cutting that hole is doubly frustrating at 4 a.m. when you are by yourself and your stoma is on high output.  I wanted to scream.  Instead, I focused on damage control by minimizing the spread of the effluent. This is so humbling, and irritating.  I am all thumbs when it comes to changing the wafer.

    One additional comment.  I remembered this from one of your earlier posts regarding the stoma paste and how sticky it is and how difficult it is to get off your fingers.  Use a cotton swab (the ones on cardboard sticks used to clean out ears) to spread it.  Works like a charm.

    One additional question/request.  There are hundreds of years of experience on this forum.  If anyone has developed successful techniques for changing ostomy wafers then please share.  For example, is it better to apply the paste to the wafer or to your stomach?  Other than eating mashmellows, is there a proven method of reducing stoma flow to aid in the change of wafers?  What has been the ideal frequency for changing your wafer?  How do you address the issue of skin irritation around your stoma?  And lastly, my stoma has become an introvert (currently flush with the skin at best) and this changes the dynamics of the paste barrier.  Ideas?

    Jim (a frustrated, sleep-deprived ostomate in Tennessee)

    Hey- Try adding fiber to your

    Hey- Try adding fiber to your system- I have an illiostomy, and it owudl seem coutner intuitive to add fiber, metamucil, but it helps to bulk up the watery output for me some (although during chemo and radiation, I got diahrea badly and the fiber could only do just so much- i ended yup dehydrated and in hospital)- I don't use pastes for my pouch- I use hollister medical adhesive, and have pretty good luck with that, but it only lasts about 24 hours when I've got the D- 48 when I don't- but that is pushing it for me- You sould also try loperamide- but I don't have any luck with those- Some folsk do though - there is also perscription lomotil- suppsoed to help bulk up the effluent- but doesn't work for me when taking chemo.

    A Flush stoma is hard to deal with- You could try Ekins seals under your wafer- but I don't have much luck with htose- many folks swear by them htough-  As for your skin irritation- you will have to change a littlem ore frequently for a little while- till the skin heals- some folks have goodl uck with using milk of magnesia on the irritated part- let dry- dab skin dry right before applying pouch- that is very important- The Hollister medical adhesive gives me enough stikiness that the pouch will remain leak free for abotu 1 day- I apply it to skin, let that dry- then apply it to pouch sseal so both contact areas have the adhesive- only takes about 3 small sprays on both, and I spread it aroudn with finger till it gets tacky-

    Good luck- it takes a lot of trial and error to find what works for you- I never had luck with marshmallows- when not on chemo fiber works really well- withotu hte fiber- my output is like water- with it it gets formed almost- and much easier to handle and helps prevent liquid workign it's way under the seal

    Also, another tip- take peptol bismol for odors- it bonds with hte odor molecules for most foods and neutralizes them

  • darcher
    darcher Member Posts: 304 Member
    #30
    Mikenh said:

    Thanks for the information on

    Thanks for the information on the upcoming treatments. I find out my mop up this Thursday when I meet with the Dana Farber Oncologist and the type of treatment will determine where and how I have it done. The mop up Xeloda is higher dosage but do you get weeks on and off? Would that compensate for the higher dosage?

    I'm resigned to going to the bathroom every three hours or so in the middle of the night. Yesterday I ate more than normal though less than usual for Thanksgiving (I didn't eat any turkey as basically anything other than ground or minced meat passes through). I slept quite soundly as well as I was tired but I have my watch alarm set for 4:30 AM so I woke up, found the bag about 40% full and emptied it out. I'm considering setting an additional alarm at 1:00 AM. I normally just wake up at those times without the alarm - the problem is if I'm really tired and sleeping soundly and don't get up. So it's just something that I've learned to live with. I think that this bugs Jim too but what do you do outside of getting a huge and sturdy bag (do they make those)?

    It's three weeks on and one

    It's three weeks on and one full week off.  Before it was monday-friday with the weekend off.  I remember those and how cruddy I felt by the time Saturday rolled around.  It was cumilitive in that each Friday I felt a little more run down than the one before. This will be worse since the vacation doesn't roll around until much later. The dosage is going to be around 4000 mg a day versus the 3000 before.  Like TruBrit I dodged the bag bullet only to step in front of a couple others.  Beyond being baren my gas which is very frequent now is beyond horrible even to me. I can only hope that settles down. I can't go anywhere since it happens on an almost every 30 minute basis. It's almost funny having to worry about things like that which prevent any social interaction.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #31
    darcher said:

    Scam Alert

    Oh brother.  Someone else trying to take advantage of people in a desperate spot.   It's dried and grinded up deer placenta he's pitching.   https://www.sgstemcell.com/blog/purtier-placenta-is-another-scam/    It's being pitched as something like stem cells which, without saying so, is meant to imply it will create new growth healthy tissue.  This won't.  It's nothing more than dried and pulvervised deer meat. Stem cells have to be LIVE and human (as far as I know) and be injected into the right spot to have any affect at all.  This is crap.      

    Ah, the scammers

    They always turn on weekends, when our moderators are enjoying home life.  Someone will pop along at some point and remove the post. 

    Tru

  • Mikenh
    Mikenh Member Posts: 777 Member
    #32
    darcher said:

    Scam Alert

    Oh brother.  Someone else trying to take advantage of people in a desperate spot.   It's dried and grinded up deer placenta he's pitching.   https://www.sgstemcell.com/blog/purtier-placenta-is-another-scam/    It's being pitched as something like stem cells which, without saying so, is meant to imply it will create new growth healthy tissue.  This won't.  It's nothing more than dried and pulvervised deer meat. Stem cells have to be LIVE and human (as far as I know) and be injected into the right spot to have any affect at all.  This is crap.      

    My son has been explaining

    My son has been explaining how various cancers work and many work in different ways. It would be wonderful to have something simple that cures them all but biochemistry is unbelievably complex and this kind of cure is just not possible.

  • darcher
    darcher Member Posts: 304 Member
    edited November 2017 #33
    It makes me angry that

    It makes me angry that individuals like dkkaran even exist trying to take advantage of people who maybe on their last leg.  This deer placentia scam has been around for a lot of years and they even sell this garbage on amazon.  This is right up there with DCA and apricot seeds except a lot more expensive.  BTW, Mikenh I responded to your questions just under your post above.

  • Mikenh
    Mikenh Member Posts: 777 Member
    #34
    darcher said:

    It's three weeks on and one

    It's three weeks on and one full week off.  Before it was monday-friday with the weekend off.  I remember those and how cruddy I felt by the time Saturday rolled around.  It was cumilitive in that each Friday I felt a little more run down than the one before. This will be worse since the vacation doesn't roll around until much later. The dosage is going to be around 4000 mg a day versus the 3000 before.  Like TruBrit I dodged the bag bullet only to step in front of a couple others.  Beyond being baren my gas which is very frequent now is beyond horrible even to me. I can only hope that settles down. I can't go anywhere since it happens on an almost every 30 minute basis. It's almost funny having to worry about things like that which prevent any social interaction.

    Maybe 5FU is a better

    Maybe 5FU is a better solution? It's two days and then off until two weeks are up? The convenience of Xeloda is hard to beat but it does sound more strenuous. For me, the bag limits my activity considerably so I may be okay with Xeloda. Maybe others that went with Xeloda can chime in or we can start a new topic.

    The bag is quite limiting but it may be that the surgery and the bag combined are what makes it tough. I'm putting away a bunch of my summer clothes and I have M and L shorts and am putting away all of the M shorts and keeping the L shorts as I need the extra space to accomadate the bag. The shorts are lined so that they provide support for the bag when I'm walking around. I'm not sure how you lost the ability to have kids (whether surgery, radiation, or muscular) but I couldn't tell you myself whether or not I could have kids as I did have the radiation and my muscles down there aren't in any kind of condition to find out. The surgeon talked about reversal for the end of January and I hope that it doesn't take that long for everything to heal up.

    Perhaps diet could help with the gas issue. It would be good if you could ask others on the forum to see if they had this and found a solution.

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