Carboplatin and 5-fu

Jeff2159
Jeff2159 Member Posts: 108
in Head and Neck Cancer #1

Has anyone had the bad luck of having a second go round of carbo and 5-fu? Had rads and chemo Dec 2012-Jan 2013. Since then I was on avastin for mets to lungs for kidney cancer but this was changed to erbitux this past February when a biopsy showed it was squamous cell. Last Pet scan showed it had spread to left 6th rib and right lower interior ramos (pelvis).Bone biopsy confirmed it was squamous cell too so I just finished my third round of carbo and 5-fu (I now know what the fu stands for--lol). During and after each round I'm nauseous and have no appetite. After this third round though, My throat feels like it is constricted and I have a gag reflex when I try to eat or drink water. My swallowing is compromised and all my food has to be pureed but unless i use the radiomix to numb my mouth and throat, I cannot even swallow water. Finally today I have had a pureed meal  for the first time in 6 days. It has gotten better, but only if I numb my mouth and I can only do that so many times. Next PET scan is on the 28th to see if this poison can work again.

Jeff

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Only one go-around with 5FU....

    and like you said, we know what the FU stands for.  Mine was in conjuction with Cisplatin, not Carbo.  5FU really rips up our mouths and throats.....so I'm wondering if that's why you're having so much trouble swallowing.....Have they given you anything to help heal your mouth and throat?  Something other than MM?

    p

  • Jeff2159
    Jeff2159 Member Posts: 108
    #3
    phrannie51 said:

    Only one go-around with 5FU....

    and like you said, we know what the FU stands for.  Mine was in conjuction with Cisplatin, not Carbo.  5FU really rips up our mouths and throats.....so I'm wondering if that's why you're having so much trouble swallowing.....Have they given you anything to help heal your mouth and throat?  Something other than MM?

    p

    5-FU is the culprit

    Saw Dr. today and he said he will lower the dosage next time. Going to give myself a little time off also as I plan to hit the round ball in Scotland mid Sept and want to be full strength and not have my immune system be down. Swallowing is much better today and did not need the radio mix to eat oatmeal tonight or swallow water. Gained 6 pounds from tuesday so all will be good now.

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    jeff, i'm praying for you to

    jeff, i'm praying for you to feel better and for your immune system to heal some so you can enjoy Scottland.

    God bless you,

    dj

  • Jeff2159
    Jeff2159 Member Posts: 108
    #5
    debbiejeanne said:

    jeff, i'm praying for you to

    jeff, i'm praying for you to feel better and for your immune system to heal some so you can enjoy Scottland.

    God bless you,

    dj

    Finally

    I have gotten good news. Pet scan was yesterday and got a phone call this morning from my Drs. assistant. Since then I had the report emailed to me and basically everything has shrunk. A pleural based nodule adjacent to the medial left upper mediastinum went from 29 x 16 mm to 25 x 11 and suv of 6.1 to 4.4. At left hilum decrease in FDG avidity suv 4.1 to 3.2. Also decrease in uptake in the posterior medial left lower lobe and decrease in the nodular mass/consolidation in the same region. Decrease in the FDG uptake in the left lateral sixth rib but a persistent lytic lesion in this location and suv going from 5.4 to 2.6. No new bone lesions or nodules or enlarged lymphnodes.

    I know I'm not out of the woods and this cancer will not ever go away but I have bought myself alot more time and its nice to have a positive report for a change

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    Jeff2159 said:

    Finally

    I have gotten good news. Pet scan was yesterday and got a phone call this morning from my Drs. assistant. Since then I had the report emailed to me and basically everything has shrunk. A pleural based nodule adjacent to the medial left upper mediastinum went from 29 x 16 mm to 25 x 11 and suv of 6.1 to 4.4. At left hilum decrease in FDG avidity suv 4.1 to 3.2. Also decrease in uptake in the posterior medial left lower lobe and decrease in the nodular mass/consolidation in the same region. Decrease in the FDG uptake in the left lateral sixth rib but a persistent lytic lesion in this location and suv going from 5.4 to 2.6. No new bone lesions or nodules or enlarged lymphnodes.

    I know I'm not out of the woods and this cancer will not ever go away but I have bought myself alot more time and its nice to have a positive report for a change

    Good for you Jeff

    You just have to take this kind of stuff one step at a time.  The trade-offs are, as you've indicated, quality of life vs length of life.  I had trouble with carboplatin, lasting six courses before my tumors escaped and began to grow again.  So my recent switch was to cisplatin and 5FU, as I am allergic to erbitux unfortunately.  The cisplatin put me in the hospital for 8 days with nausea vomiting and dehydration, so that's not optima.  OTOH, I can tell from my symptoms that I've had a positive tumor response (less pain, less odor, etc), so I'm willing to try it again, with a doseage adjustment to the cisplatin.  5FU has given me some pretty good mouth sores on round one, but not too bad on the GI symptoms, so that hasn't been my current problem, at least.

    We all carry on the best we can.  Quality and quantity are sometimes not synonymous terms, as you've said.   Best to you.

     

     

    Pat

  • lornal
    lornal Member Posts: 428
    #7
    longtermsurvivor said:

    Good for you Jeff

    You just have to take this kind of stuff one step at a time.  The trade-offs are, as you've indicated, quality of life vs length of life.  I had trouble with carboplatin, lasting six courses before my tumors escaped and began to grow again.  So my recent switch was to cisplatin and 5FU, as I am allergic to erbitux unfortunately.  The cisplatin put me in the hospital for 8 days with nausea vomiting and dehydration, so that's not optima.  OTOH, I can tell from my symptoms that I've had a positive tumor response (less pain, less odor, etc), so I'm willing to try it again, with a doseage adjustment to the cisplatin.  5FU has given me some pretty good mouth sores on round one, but not too bad on the GI symptoms, so that hasn't been my current problem, at least.

    We all carry on the best we can.  Quality and quantity are sometimes not synonymous terms, as you've said.   Best to you.

     

     

    Pat

    Odor (LOL)

    Funny you should mention order.  I have never heard about cancer "smelling".  Never seen it written anywhere before, or had it mentioned to me - until...  (mind you - not something i researched before).

    I had that trache on January 6.  Went into the hospital on Jan 2 with breathing difficulties - knew I should have taken a shower that morning....  I got out of the hospital on Jan 10, but went back in on Jan 12 - couldn't handle the trache on my own - until my laryngectomy on Jan 16.  Anyway - they eventually put me in a room by myself (not even another bed) and TWO hepa filters.  I didn't find out until later why they did that (I thought maybe my BO - but I did wash during that time).  Someone finally said that cancer stinks - literally.  LOL

    Lorna

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    Jeff2159 said:

    Finally

    I have gotten good news. Pet scan was yesterday and got a phone call this morning from my Drs. assistant. Since then I had the report emailed to me and basically everything has shrunk. A pleural based nodule adjacent to the medial left upper mediastinum went from 29 x 16 mm to 25 x 11 and suv of 6.1 to 4.4. At left hilum decrease in FDG avidity suv 4.1 to 3.2. Also decrease in uptake in the posterior medial left lower lobe and decrease in the nodular mass/consolidation in the same region. Decrease in the FDG uptake in the left lateral sixth rib but a persistent lytic lesion in this location and suv going from 5.4 to 2.6. No new bone lesions or nodules or enlarged lymphnodes.

    I know I'm not out of the woods and this cancer will not ever go away but I have bought myself alot more time and its nice to have a positive report for a change

    Jeff, glad you got some good

    Jeff, glad you got some good news.  I pray this continues.

    God bless you,

    dj

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