Lonsurf

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Tom M.
Tom M. Member Posts: 223 Member
in Colorectal Cancer #1

First day on Lonsurf.  75 mg twice a day. 5 days on, 2 days off and then another 5 days on and then 2 weeks off. I slept all day after the first dose. I can't sleep for 2 weeks out of the month. I hope this gets better.

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  • PamRav
    PamRav Member Posts: 348 Member
    edited August 2021 #2
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    Hoping

    All goes well with you and this new chemo.  Can you take something, anything to help you sleep?   Ativan or, ambien?  
    Eventually I assume this will be my next drug.  
    i hope you will continue to post on your experiences

    prayers for a robust response 

    pam

  • abita
    abita Member Posts: 1,152 Member
    edited August 2021 #3
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    PamRav said:

    Hoping

    All goes well with you and this new chemo.  Can you take something, anything to help you sleep?   Ativan or, ambien?  
    Eventually I assume this will be my next drug.  
    i hope you will continue to post on your experiences

    prayers for a robust response 

    pam

    I think the problem is that

    I think the problem is that all he can do is sleep after taking the pill.

  • Tom M.
    Tom M. Member Posts: 223 Member
    edited August 2021 #4
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    Adjustment

    I see the Onc. tomorrow. Maybe I just need a dosage adjustment. 50 rounds of Folfox with Avastin and no problems at all. This Lonsurf is kinda new, we'll work it out.

  • PamRav
    PamRav Member Posts: 348 Member
    #5
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    Gotta ask

    Tom, you did 50 rounds of FOLFOX?  I did 11 which ended last December and i still have bad neuropathy.  Did you get it also,?  If so or not what did you do or use to avoid or improve it.  
    thanks 

    p

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    #6
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    Tom, I'm on Irinotecan and

    Tom, I'm on Irinotecan and was having some terrible fatigue issues. Like you, I couldn't stay awake. I discovered that it wasn't the chemo as much as it was the meds they were giving me to control the nausea. This past week I asked for them to drop one of the meds. The nausea is not that much more of an issue and I am more ambulatory now. Maybe look at what they are giving you to make the medcine go down.

    I don't know about your situation but it seems like my team is overreacting to me talking side effects. I say I'm nauseous and the NP prescribed 10 more meds for it. To me, I'm just saying this is what is happening, and I guess they hear a plea for help.

  • abita
    abita Member Posts: 1,152 Member
    #7
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    Real Tar Heel said:

    Tom, I'm on Irinotecan and

    Tom, I'm on Irinotecan and was having some terrible fatigue issues. Like you, I couldn't stay awake. I discovered that it wasn't the chemo as much as it was the meds they were giving me to control the nausea. This past week I asked for them to drop one of the meds. The nausea is not that much more of an issue and I am more ambulatory now. Maybe look at what they are giving you to make the medcine go down.

    I don't know about your situation but it seems like my team is overreacting to me talking side effects. I say I'm nauseous and the NP prescribed 10 more meds for it. To me, I'm just saying this is what is happening, and I guess they hear a plea for help.

    I had a NP once give me 2,

    I had a NP once give me 2, one as a backup if the primary didn't work, but 10 meds just for nausea seems excessive 

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    edited September 2021 #8
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    abita said:

    I had a NP once give me 2,

    I had a NP once give me 2, one as a backup if the primary didn't work, but 10 meds just for nausea seems excessive 

    Hahah I exaggerated for

    Hahah I exaggerated for effect, sorry! Two shots, an IV med, one pill before infusion, plus zofran and another I can't even recall for home use. It is really the IV one that did me in. No wonder I felt sleepy.

  • Tom M.
    Tom M. Member Posts: 223 Member
    #9
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    PamRav said:

    Gotta ask

    Tom, you did 50 rounds of FOLFOX?  I did 11 which ended last December and i still have bad neuropathy.  Did you get it also,?  If so or not what did you do or use to avoid or improve it.  
    thanks 

    p

    50 rounds

    Yes Pam 50 rounds with avastin and most likely 3/4 of that with Irintocan (sp?)  Anyway I handeled it all well, but it just stopped working. I think the FU5 stopped. So now I am on Lonsurf and on the 22 Sept I will have Radioembolization on the liver mets. Sounds promising so I am pretty much still in the game. While on infusion I did not have many side effects, as to your neuropathy question I have it on the bottoms of my feet only. Very mild, feels like I'm walking on pillows. It doesn't bother me at all. I've heard those who get it takes 2 years after chemo to go away. I hope your's doesn't bother you too much.

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