I stepped back in time about 5 weeks....

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phrannie51
phrannie51 Member Posts: 4,716
in Head and Neck Cancer #1
I haven't felt this miserable since the 4 or 5th weeks of rads, and I can't put my finger on the reason for it, too many choices.

I had the 5FU pump from Tues to Saturday....my face turned a tiny bit pink on Weds, but by Thrus and Friday, it was hot, red, and puffy. I thought maybe I got a little too much sun on Weds, and that was causing all the face stuff. My lips swelled, and now they are cracked, stinging, and peeling. My throat is sore, and I even had a tiny fever...101.7. The nurse who took my fanny pack didn't think any of this was that big of deal.

I honestly don't know if all this is from 10 minutes of sun on my face on Weds, a reaction to the 4 days of 5FU, maybe I caught a bug somewhere, or maybe my rads reached out nabbed me by the back of the neck....I feel like I took 7 steps ahead, and dropped back 8.

p
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  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    #2
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    Sorry about that phrannie
    Hate to hear of your reactions.....that does seem to be part of all of it. I too am having side effects that don't seem to be getting better, but not as severe as yours. Hoping things get better SOON!!! This ride sure "aint" fun!!!!
  • KTeacher
    KTeacher Member Posts: 1,103
    #3
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    So Sorry to hear
    I never had chemo so of no help there. I know with rads I was very uncomfortable out in the sun, burny feeling right away, hence, wide brimmed hats (skin also hurt in winter in the cold). Sounds like you could be reacting to all that is going on. Have you been able to keep up with water? Get your creams and balms out, not fun for skin and lips to hurt.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
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    Combination..
    It could be a combination of all....

    Sun does have reactions with some of the chemo treatments, so you could be one thata's a bit more senstive.

    Also the 5FU, you could be a little reactive tp that as well.

    I know myself and others had some kind of blood cell boosters that caused reactions. Especially of bone pain and fatigue, not unlike catching the flu.

    Not sure what else that you are having, but a combination of mild reactions might contribute to the overall bad feeling.

    Hope you start feeling better,
    John
  • Ingrid K
    Ingrid K Member Posts: 813
    #5
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    KTeacher said:

    So Sorry to hear
    I never had chemo so of no help there. I know with rads I was very uncomfortable out in the sun, burny feeling right away, hence, wide brimmed hats (skin also hurt in winter in the cold). Sounds like you could be reacting to all that is going on. Have you been able to keep up with water? Get your creams and balms out, not fun for skin and lips to hurt.

    sorry you got hit again
    WOW, it does sound like you got a triple whammy of all of the built-up side effects all at once.....sorry you are feeling so rotten. I think you are correct in thinking it is any one of a number of things all ganging up on you.

    Like KT says above, get out your creams and lip balms and get a big floppy hat, the sun will feel stronger on your face until it can firm up again a bit.

    I hope you can find some relief ASAP....maybe cool/cold washcloths. (I think that I have blocked out some of the really bad days...but I do remember needing the cold washcloths for a few days) maybe they would help you too.
  • Sam999
    Sam999 Member Posts: 319 Member
    #6
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    Skiffin16 said:

    Combination..
    It could be a combination of all....

    Sun does have reactions with some of the chemo treatments, so you could be one thata's a bit more senstive.

    Also the 5FU, you could be a little reactive tp that as well.

    I know myself and others had some kind of blood cell boosters that caused reactions. Especially of bone pain and fatigue, not unlike catching the flu.

    Not sure what else that you are having, but a combination of mild reactions might contribute to the overall bad feeling.

    Hope you start feeling better,
    John

    Hi Phrannie,
    So sorry to
    Hi Phrannie,

    So sorry to hear about this. Hope things will turn around soon for you. I was running fever upto 101.3 every evening. Fever will come and go in an hour or two. They ran cmplete blood work twice but could not find anything. My ear was little red so they can me a dose of antibiotics and that had taken care of fever.

    Sam
  • osmotar
    osmotar Member Posts: 1,006
    #7
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    Dang
    Sorry to hear this ...I hated the 5fu beast, not that I had any reactions from the chemo just in pain of having to wear the pump and worried about sleeping, bathing , etc, I couldn't wait for Friday afternoon to roll around to get it disconnected. Like others have said it could be a combo of everything you listed. Will you also be getting a neulasta injection to help with the white blood cell counts? My routine was pump mon-fri, shot the following monday. After the first injection , by wed my temp had spiked to 101, they say to call when it gets to that point, so I did, by that afternoon i was in the hospital with a very low white cell count, spent 2 days there on antibiotics, then home with oral meds for 2 weeks. If it's not one thing it's another, but I will have to say after that first episode everything was ok and no more problems.
  • osmotar
    osmotar Member Posts: 1,006
    #8
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    Boosters
    After reading Skiffins post, I remembered my onco nurse said to take 1 aleve and 1 claritan the day before and the day of my neulastan injection to ward off any flu like symptoms, it semmed to have worked for me.
  • katenorwood
    katenorwood Member Posts: 1,912
    #9
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    This stinks !
    Phrannie,
    I am so sorry you feel crappy ! I'm hoping this turn around for you asap ! This taking a step forward and getting knocked back 3 is frustrating. You are in my thoughts and prayers girl ! Warmest regards, Katie

    I'm also looking for a floppy hat for some fun in the sun ! Not having much luck though.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #10
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    Thanks everybody for answering....
    I feel a little better just getting the virtual hugs from you. I hadn't left my hat inside since Weds...if it's sun I don't want to up the dose to my face!! Have been slathering Aloe Vera on my face, and even got the Aquafor out for my lips...so did drag out my lotions and potions out.

    I go get a CBC tomorrow, so we'll seee how my bloodwork looks. I usually end up with nupegyn the first week after chemo....I have to have two more Cisplatins, with a follow up 4 days of the 5FU pump...if my cheeks get pink the next time, then I'll know it's a reactions to 5FU.

    Anyway, got my hat, my lotions and potions...MM for the sore throat, and Lorazapam to make time pass.

    p
  • Laralyn
    Laralyn Member Posts: 532
    #11
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    Hope it passes soon!
    I didn't have that type of chemo, but I hope it gets better for you quickly! Can you try calling or emailing your doctor to ask about it? I was told that a fever over 100 should be reported immediately, so I would double-check despite what that nurse said.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
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    phrannie51 said:

    Thanks everybody for answering....
    I feel a little better just getting the virtual hugs from you. I hadn't left my hat inside since Weds...if it's sun I don't want to up the dose to my face!! Have been slathering Aloe Vera on my face, and even got the Aquafor out for my lips...so did drag out my lotions and potions out.

    I go get a CBC tomorrow, so we'll seee how my bloodwork looks. I usually end up with nupegyn the first week after chemo....I have to have two more Cisplatins, with a follow up 4 days of the 5FU pump...if my cheeks get pink the next time, then I'll know it's a reactions to 5FU.

    Anyway, got my hat, my lotions and potions...MM for the sore throat, and Lorazapam to make time pass.

    p

    Flush
    I did forget to mention....

    My face would stay flush and swollen for days while on 5FU and the big chemo doses....

    JG
  • CajunEagle
    CajunEagle Member Posts: 408
    #13
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    osmotar said:

    Boosters
    After reading Skiffins post, I remembered my onco nurse said to take 1 aleve and 1 claritan the day before and the day of my neulastan injection to ward off any flu like symptoms, it semmed to have worked for me.

    Verification....
    Yes maam, I recall taking that Aleve and Claritan (the 24 hour one reditabs), but it did not seem to help with the awful aching symtoms that came with the Neulasta injection. With having 6 Cisplatnin sessions, and 2 5fus and Taxtera, they always gave me the Neulasta shot on a Friday afternoon.....where I'd fell like crap the entire weekend. Just goes to show that we all react differently.

    Larry
  • phrannie51
    phrannie51 Member Posts: 4,716
    #14
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    Skiffin16 said:

    Flush
    I did forget to mention....

    My face would stay flush and swollen for days while on 5FU and the big chemo doses....

    JG

    WOW John....then this whole face thing
    could be from the 5FU! I'm SO glad you told me this. I thought that 10 minutes without my hat in the sun on Weds was really stretching it when I look at my face today, 5 days later....I had 80% Cisplatin last Tues, then ran and picked up the pack...and was on that from Tues afternoon till Sat afternoon.

    Today for the first time since DX, I absolutely HAVE to use my tube to eat, no other choice...my lips are so spit and peeling, even water stings so bad it makes my nose run...the corners of my mouth are growing some kind of crust...and it's ultra painful to open my mouth even a little bit.

    Ya know I've handled everything pretty good so far...but I had a heads up for a lot of what may be coming down the pike. Between you guys, the Drs., and a couple people I know here in Kalispell who have had HNC, I knew what to look for, what to do, what to ask for etc etc. This red swollen face came out of the blue...John I feel so much better knowing it's probably a side effect. Thank you!!

    p
  • Grandmax4
    Grandmax4 Member Posts: 723
    #15
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    Hope you're feeling
    better...I would just take a pain pill and sleep this time away...sounds so painful, some Nurses are not very compassionate, I guess seeing what they see has made them hard
  • NoDuck
    NoDuck Member Posts: 134
    #16
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    Hang In There!
    When the always positive and tough as nails Phrannie says its bad, WOW. I am so sorry you have taken this step back. Prayers for better days ahead on your journey to NED.

    Deb
  • hwt
    hwt Member Posts: 2,328 Member
    #17
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    NoDuck said:

    Hang In There!
    When the always positive and tough as nails Phrannie says its bad, WOW. I am so sorry you have taken this step back. Prayers for better days ahead on your journey to NED.

    Deb

    So sorry to hear
    I was going to mention Aquaphor but you beat me to it. Use frequently and try a straw with the water so you don't have to open too wide. Prayers for a speedy resolution to what's got you down.
  • ditto1
    ditto1 Member Posts: 660
    #18
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    hwt said:

    So sorry to hear
    I was going to mention Aquaphor but you beat me to it. Use frequently and try a straw with the water so you don't have to open too wide. Prayers for a speedy resolution to what's got you down.

    Just sending a we care
    response from D&D, You have done so well so we were sadly surprised to see you leading the What the Heck Just Happened Blog. Seems everyone stumbles into something tommorrow that was a non issue yesterday or since treatment started. I agree with others that I would try to get your Doctors opinion ASAP sounds like a tough side effect with multiple issues and what you described has to be alarming and if the Nurse says no big deal, at the risk of being rude I would bypass her in a heart beat and say all due respect I need some answers if for no other reason than peace of mind. Sorry for pushing the Bullying advice but you deserve some answers. So special prayer going out to you tonight.
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #19
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    feel better
    Hi Phrannie,

    My vote is for the chemo with a touch of sun, but mainly chemo. That is of course if you were not “catching bugs” (as you mentioned). Way up there in Montana I would be more afraid of a deer tick or something. You weren’t wrestling deer were you?

    Now seriously (little bit), I hope you have a handle on the red face, fever, swollen face, etc… Here I held your place in line, so you don’t have to take any steps backward (8 steps, no way, not Phrannie).

    Best wishes,

    Matt
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #20
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    phrannie51 said:

    WOW John....then this whole face thing
    could be from the 5FU! I'm SO glad you told me this. I thought that 10 minutes without my hat in the sun on Weds was really stretching it when I look at my face today, 5 days later....I had 80% Cisplatin last Tues, then ran and picked up the pack...and was on that from Tues afternoon till Sat afternoon.

    Today for the first time since DX, I absolutely HAVE to use my tube to eat, no other choice...my lips are so spit and peeling, even water stings so bad it makes my nose run...the corners of my mouth are growing some kind of crust...and it's ultra painful to open my mouth even a little bit.

    Ya know I've handled everything pretty good so far...but I had a heads up for a lot of what may be coming down the pike. Between you guys, the Drs., and a couple people I know here in Kalispell who have had HNC, I knew what to look for, what to do, what to ask for etc etc. This red swollen face came out of the blue...John I feel so much better knowing it's probably a side effect. Thank you!!

    p

    Chemo Flushing...
    Can't say for ure that is your situation... But if you Google it, chemo induced flushing is not uncommon;

    Flushing Is a temporary redness of the face and neck caused by dilation of the blood capillaries. Flushing is due to a variety of causes such as certain chemotherapy drugs.

    •Several chemotherapy drugs are associated with this flushing such as: asparaginase, bleomycin, carboplatin, carmustine, cisplatin, cyclophosphamide, dacarbazine, diethylstilbestrol, docetaxel, doxorubicin, fluorouracil, lomustine, paclitaxel, plicamycin, procarbazine, and teniposide.



    Flushed Face

    Red Face

    Here you go, LOL....me sporting a fuzzy head buzz cut, and glowing red with chemo flushed red and swollen face;

    Skiffin ~ Fuzzy Buzz Cut & Red Puffy Face

    I look like the guy in The Goonies that was locked in the dungeon....

    John
  • phrannie51
    phrannie51 Member Posts: 4,716
    #21
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    Skiffin16 said:

    Chemo Flushing...
    Can't say for ure that is your situation... But if you Google it, chemo induced flushing is not uncommon;

    Flushing Is a temporary redness of the face and neck caused by dilation of the blood capillaries. Flushing is due to a variety of causes such as certain chemotherapy drugs.

    •Several chemotherapy drugs are associated with this flushing such as: asparaginase, bleomycin, carboplatin, carmustine, cisplatin, cyclophosphamide, dacarbazine, diethylstilbestrol, docetaxel, doxorubicin, fluorouracil, lomustine, paclitaxel, plicamycin, procarbazine, and teniposide.



    Flushed Face

    Red Face

    Here you go, LOL....me sporting a fuzzy head buzz cut, and glowing red with chemo flushed red and swollen face;

    Skiffin ~ Fuzzy Buzz Cut & Red Puffy Face

    I look like the guy in The Goonies that was locked in the dungeon....

    John

    So John....your flushed face has a healthy
    look....like sunkissed. That's how mine looked on Weds...but Thursdat it was bright RED, and so swollen all my wrinkles disappeared, LOL...my lips were the hardest part tho, cuz they were fevered, and now they are too tender to drink water, or drink my food...been slathering them all day with Aquafor, just trying to keep them soft so they won't crack any more.

    The last 5 days have been the most miserable I've been since I started this road trip (I think :) some things I don't remember all that well)...course maybe when my neck was fried took the top honor, but this is running a close second...

    p

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