Back in the thick of things - cancer in spine and lungs

abrub
abrub Member Posts: 2,174 Member
in Colorectal Cancer #1

And so I'm back in full treatment, but need some reminders.  It's been a while.

I just (as in Friday) started back in chemo - this time just the Irinetocan and Avastin (no 5FU).  I am still extremely weak 3 days later.  Is this normal?  I keep just dozing off, and anything I do is too much.  I'd love to get on my bike, but am afraid to do so.

Also, I'm taking Tincture of Opium for diarrhea, but even that isn't enough.  Any non-medicinal tricks that might help?  I do have a call into my drs.

My CEA just went screaming high after a few weeks - my guess it could be from inflammation from the massive radiation treatment I had 10 days ago?  (Basically 24 fractions in a single dose.)

I know the tricks of the trade are all hidden in these questions, but I'm too drained to start searching, and would appreciate any hellp.

Other note:  while I know about oral care to avoid mouth sores from chemo, could the chemo also have caused the nasal sore/polyp that I just developed?  (Also a mucosal membrane.)

Yes, I know to call drs with any questions, but I also know what I can learn from my fellow travellers whose info exceeds the drs in many cases.

And so I grumble on.

With thanks,

Alice

Comments

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    edited July 2021 #2
    So sorry to hear all of this.

    Oh Alice so sorry that you are having to endure the full effects of intense Chemo.  I believe that the tincture of Opium causes sedation effects and it may be one of the reasons for your extreme fatigue? I think chemo affects all of the faster growing cells, and I beleve the mucous membrane cells are fast growing --so the chemo could be a part of the issue with your nose and mouth. Praying that you are feeling better soon!

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited July 2021 #3
    We know, you know, you know.

    You have been travelling this road for too long, even if you did get a blessed break for a while. 

    I am sorry to hear about the chemo woes, they all sound so familiar. 

    As AZ said, the polyp is no doubt caused by the chemo.  I had chronic nose bleeds while I was doing the FOLFOX. It dried everything up, and who knows what might grow.  I hope it doesn't inhibit your breathing. 

    Maybe it is time for a stationary bike. Being out and about, when you have chronic diarrhea, is not fun. That was one of the worst things for me, during and after radiation. Being stuck near a toilet for fear of......

    Thinking of you. 

    Tru

  • abrub
    abrub Member Posts: 2,174 Member
    edited July 2021 #4
    myAZmountain said:

    So sorry to hear all of this.

    Oh Alice so sorry that you are having to endure the full effects of intense Chemo.  I believe that the tincture of Opium causes sedation effects and it may be one of the reasons for your extreme fatigue? I think chemo affects all of the faster growing cells, and I beleve the mucous membrane cells are fast growing --so the chemo could be a part of the issue with your nose and mouth. Praying that you are feeling better soon!

    not the tincture of opium

    Thanks for your comments. I've been on the tincture of opium for a year now, and I've bcen fortunate to have no sedation or other issues with it.

    Fatigue is definitely the chemo.

  • abrub
    abrub Member Posts: 2,174 Member
    edited July 2021 #5
    Trubrit said:

    We know, you know, you know.

    You have been travelling this road for too long, even if you did get a blessed break for a while. 

    I am sorry to hear about the chemo woes, they all sound so familiar. 

    As AZ said, the polyp is no doubt caused by the chemo.  I had chronic nose bleeds while I was doing the FOLFOX. It dried everything up, and who knows what might grow.  I hope it doesn't inhibit your breathing. 

    Maybe it is time for a stationary bike. Being out and about, when you have chronic diarrhea, is not fun. That was one of the worst things for me, during and after radiation. Being stuck near a toilet for fear of......

    Thinking of you. 

    Tru

    i just did 5 miles on my bike

    Out on our local bike path.  Struggled with severe pain, but at least I got out.

    Loving my new ebike, it's saving my life.

    Alice

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited July 2021 #6
    abrub said:

    i just did 5 miles on my bike

    Out on our local bike path.  Struggled with severe pain, but at least I got out.

    Loving my new ebike, it's saving my life.

    Alice

    Good to hear

    Getting out in nature, is always a healer.  

    I had to look up what an ebike was.  Gosh, I am really behind the times. It looks fantastic, and I am glad that it gets you out and about. 

    Tru

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    edited July 2021 #7
    Third treatment (I'm also

    Third treatment (I'm also skipping 5FU) I had a a really bad week, those three days after I couldn't stay awake. I hadn't that symptom before. The week after infusion I usually feel I have recovered enough to get some serious exercise in but not after the third one, I couldn't. I could do some easy chores, but nothing else.

  • abrub
    abrub Member Posts: 2,174 Member
    #8
    Real Tar Heel said:

    Third treatment (I'm also

    Third treatment (I'm also skipping 5FU) I had a a really bad week, those three days after I couldn't stay awake. I hadn't that symptom before. The week after infusion I usually feel I have recovered enough to get some serious exercise in but not after the third one, I couldn't. I could do some easy chores, but nothing else.

    thanks

    It means I'm not going crazy.

    Alice

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    edited July 2021 #9
    I am sorry Alice

    I hope in the coming days your energy and pain gets better. My husband had Lomotil for the diarrhea from his chemo it was a prescription. Also when he did his SBRT radiation he was exhausted so that's probably it, and Avastin also gave him horrible nose bleeds so it's probably the culprit for your nose. 

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited July 2021 #10
    Sorry to hear this. I to had

    Sorry to hear this. I to had lomotil for the diarrhea as nothing else would help. Prayers coming your way Alice.

  • DanNH
    DanNH Member Posts: 186 Member
    #11
    My wife gets her infusion

    My wife gets her infusion with a liter bag of fluids which jump starts hydration. It's hard to get enough liquids to counteract the losses at the other end. It's Imodium to slow things down but it never really stops it. Don't forget that there is often a second wave around day 11.

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #12
    I am so sorry to read this. 

    I am so sorry to read this.  You actively stay on top of it and that is a good good thing!

    I am a firm believer in pre/pro/post biotics for a strong gut.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #13
    Awww

    I'm so sorry to hear that you are back on it again.  My nose bleed terrible and would just start dripping blood while being in a conversation with someone.  There were sores all inside my nasal passages, even spitting up blood because of it draining.  Wishing the doctors would explain more of the symptoms that you get from the treatment instead of letting someone find out for themselves.  Fatigue was a big problem for me too, just not having the energy to do anything. Hoping that it gets better for you.

    Hugs, Kim

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