Side effects of Fluorouracil (5FU) for NPC Nasopharyngeal Cancer

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  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited June 2019 #22
    Glad to Hear

    You are almost through with treatment. A rough road but you have come up with a plan and ways to manage it better. Looking forward to NED for you-God Bless

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #23
    wbcgaruss said:

    Glad to Hear

    You are almost through with treatment. A rough road but you have come up with a plan and ways to manage it better. Looking forward to NED for you-God Bless

    Glad to Hear reply

    I appreciate the positive thoughts - and I hope you are doing well also - thanks!

    Yes, I am looking forward to (and currently expecting) a NED in my future...

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited July 2019 #24
    TREATMENT IS DONE!!

    I was diagnosed with Nasopharyngeal Cancer, back at the end of last year. I had 35 sessions of radiation, with concurrent Cisplatin chemo. I then had 3 follow-up "seek and destroy" sessions with Cisplatin, then time-release Flourouracil (5FU). I got the LAST time release "ball" removed on Friday - and rang the bell!!

    I'm still dealing with a little of the side effects of 5FU - mouth pain (less than usual), tiredness ... trying to rest, and a bit of neuropathy in my fingers and occasionally my lower legs. My hair has also thinned a bit - but is expected to grow back.

    Funny note: my moustache completely "disappeared" for about 3 months, where I didn't even have to shave it. But now, I notice is has come "back in  black", and it seems it shows up easily - even right after shaving! (Before, it was blonde/brown and grey - and didn't really show up much, until I had let it grow a couple days...)

    I feel for anyone who is getting ready to, or going through treatment - but I'm here to tell you that it ENDS at some point, and you WILL move on to a more normal life again. I pray that everyone hangs in there, and gets the help they need - and that they have family, a lover and friends who help them, as much as mine did. Don't forget to tell them "thank you" - if you were indeed as lucky as I was!!

  • ERomanO
    ERomanO Member Posts: 323 Member
    #25
    motorcycleguy said:

    TREATMENT IS DONE!!

    I was diagnosed with Nasopharyngeal Cancer, back at the end of last year. I had 35 sessions of radiation, with concurrent Cisplatin chemo. I then had 3 follow-up "seek and destroy" sessions with Cisplatin, then time-release Flourouracil (5FU). I got the LAST time release "ball" removed on Friday - and rang the bell!!

    I'm still dealing with a little of the side effects of 5FU - mouth pain (less than usual), tiredness ... trying to rest, and a bit of neuropathy in my fingers and occasionally my lower legs. My hair has also thinned a bit - but is expected to grow back.

    Funny note: my moustache completely "disappeared" for about 3 months, where I didn't even have to shave it. But now, I notice is has come "back in  black", and it seems it shows up easily - even right after shaving! (Before, it was blonde/brown and grey - and didn't really show up much, until I had let it grow a couple days...)

    I feel for anyone who is getting ready to, or going through treatment - but I'm here to tell you that it ENDS at some point, and you WILL move on to a more normal life again. I pray that everyone hangs in there, and gets the help they need - and that they have family, a lover and friends who help them, as much as mine did. Don't forget to tell them "thank you" - if you were indeed as lucky as I was!!

    Ring that bell, brother!

    Congrats on getting through the treatments, and may you experience nothing but improvement from here on out!  

    I had a neighbor that went through some sort of chemo treatments a number of years ago.  He had a thick head of white hair prior to his cancer treatmwnts, then a thick head of black hair months later.  That's crazy!

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #26
    Over 3 weeks after last 5 FU treatment

    Well, 3 weeks+, since last treatment. Eating continues to get easier (although I do eat eggs a lot). Things like hamburgers and pizza are still too "heavy" to even consider. After a couple bites, my weary taste buds give out, and say "NO MORE"!

    But eggs, oatmeal and my girlfriend's smoothies will carry me through. I went to the Oncologist to talk follow up activity. I will get a PET Scan in a month. I didn't realize it, but I've lost 40+ pounds, since starting treatment. I am now down to 154 pounds, which I haven't been since about 1983 - LOL!

    I continue to lose hair slowly, from my head, but the Oncologist tells me that that usually "turns around" at about Month 3, after treatment. She says the neuropathy usually clears up (in most patients), in 6 months.

    I was able to, and still continue to be able to work through - although I will admit I got tired sometimes (fell asleep at my desk, more than once). I'm an electrical engineer - and I've gotten back into field work, and doing 11 hour days - and it's been OK (although after 11 hours, I just want to eat, and rest until bedtime...)

    Again, the treatment is not easy, and I feel for anyone doing Radiation, Cisplatin and 5FU. But, there is a point when you'll ring the bell and start moving on in life. I spent last Saturday morning with my grandson's (2 and 5) at the park - and had a GREAT time!!

    Hang in there!!

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
    #27
    motorcycleguy said:

    Over 3 weeks after last 5 FU treatment

    Well, 3 weeks+, since last treatment. Eating continues to get easier (although I do eat eggs a lot). Things like hamburgers and pizza are still too "heavy" to even consider. After a couple bites, my weary taste buds give out, and say "NO MORE"!

    But eggs, oatmeal and my girlfriend's smoothies will carry me through. I went to the Oncologist to talk follow up activity. I will get a PET Scan in a month. I didn't realize it, but I've lost 40+ pounds, since starting treatment. I am now down to 154 pounds, which I haven't been since about 1983 - LOL!

    I continue to lose hair slowly, from my head, but the Oncologist tells me that that usually "turns around" at about Month 3, after treatment. She says the neuropathy usually clears up (in most patients), in 6 months.

    I was able to, and still continue to be able to work through - although I will admit I got tired sometimes (fell asleep at my desk, more than once). I'm an electrical engineer - and I've gotten back into field work, and doing 11 hour days - and it's been OK (although after 11 hours, I just want to eat, and rest until bedtime...)

    Again, the treatment is not easy, and I feel for anyone doing Radiation, Cisplatin and 5FU. But, there is a point when you'll ring the bell and start moving on in life. I spent last Saturday morning with my grandson's (2 and 5) at the park - and had a GREAT time!!

    Hang in there!!

    Glad to Hear the News

    Glad to Heaar the News! You will always be in our thoughts and prayers.  Continue to stay in good health.

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #28
    Sabrina23 said:

    Glad to Hear the News

    Glad to Heaar the News! You will always be in our thoughts and prayers.  Continue to stay in good health.

    4 weeks after final Flourouracil treatment, update

    Sabrina,

     

    I very much appreciate all thoughts and prayers - thank you!

     

    I continue to feel better, and stronger day by day. My taste buds and appetite are slowly coming back, now  that I'm 4 weeks from treatment. Certain foods still don't work well (some meats are just too "heavy" - as they seem to "wear out" my struggling taste buds too fast.) However, I've found that eggs consistently taste good - and a few other foods are starting to join them on my list!

     

    My hair is still falling out, but my Oncologist tells me that turns around about 3 months after final treatment. I just wear a hat. I also have a bit of Neuropathy (numbness in fingers and toes), which she tells me will probably fade in 6 months.

     

    I had an MRI - as I told my Oncologist that I get what feels like a mild electrical "jolt" when I put my head down (towards my chest). It isn't painful, but I thought it was something I should get checked out.

     

    Anyway, she wants me to talk to a Neuor-surgeon. I'm not real sure if I'm so concerned about it, that I want to consider surgery, at this point.

     

    But - the good news, is that they tell me that the MRI indicates NO SIGN OF ANY CANCER in my head or neck!!!

     

    I hope all of you Cancer Survivors remain hopeful, and keep your sense of humor - it's VITAL for recovery!!!

     

    Motorcycleguy...

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #29
    Update to last message...

    The mild electrical "jolt" I feel when I put my head down, occurs in my feet, ankles or lower legs. It is not painful .. just a quick minor "jolt" sensation...

     

    If I stretch my neck a bit, it goes away. But it will surprise me, occcasionally, when I look down suddenly.

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #30
    Update on Nasopharyngeal Cancer Treatment Recovery

    I'm 5 months out of radiation and 2-1/2 months out of chemo.

    I still feel neuropathy in my hands, forearms and feet. It doesn't slow me down, much - except fine hand skills are a little more challenging. My Oncologist tells me this fades in most people, about 6 months after treatment.

    I started losing hair, about a month after my chemo treatment was all over. It isn't falling out as fast, now - and I have new, (thick) hair coming in. So - I will never be bald. I just wear a hat to cover it, while it's thin. My gf got me on hair vitamins, which seemed to put me ahead of the 3 month "regrowth" prediction from my Oncologist.

    The really good news, is that I'm finally able to eat pretty much anything, again. I can't eat as much as I did, but I can eat foods, and it's slowly starting to taste good again!! I lost 45 pounds during my treatment, and just in the last 3 weeks, have started to slowly put a little bit back on!!

    I'm feeling more energy every day - and am working 12 hour days on a construction site, as a project engineer!

    I get my PET Scan in 2 weeks - and I'm looking for my NED!!

    I wish you all the best of luck, in your treatment.

    Motorcycleguy (aka Curt)

  • big G
    big G Member Posts: 177 Member
    #31
    motorcycleguy said:

    Update on Nasopharyngeal Cancer Treatment Recovery

    I'm 5 months out of radiation and 2-1/2 months out of chemo.

    I still feel neuropathy in my hands, forearms and feet. It doesn't slow me down, much - except fine hand skills are a little more challenging. My Oncologist tells me this fades in most people, about 6 months after treatment.

    I started losing hair, about a month after my chemo treatment was all over. It isn't falling out as fast, now - and I have new, (thick) hair coming in. So - I will never be bald. I just wear a hat to cover it, while it's thin. My gf got me on hair vitamins, which seemed to put me ahead of the 3 month "regrowth" prediction from my Oncologist.

    The really good news, is that I'm finally able to eat pretty much anything, again. I can't eat as much as I did, but I can eat foods, and it's slowly starting to taste good again!! I lost 45 pounds during my treatment, and just in the last 3 weeks, have started to slowly put a little bit back on!!

    I'm feeling more energy every day - and am working 12 hour days on a construction site, as a project engineer!

    I get my PET Scan in 2 weeks - and I'm looking for my NED!!

    I wish you all the best of luck, in your treatment.

    Motorcycleguy (aka Curt)

    update

    Hey glad your energy level is up and you are doing well. Wishing you NED on the pet in 2 weeks. Take care

  • Logan51
    Logan51 Member Posts: 468 Member
    #32
    Curt

    I'm a 10 year & 5 month NPC Survivor. The "ball" of FU-5 is a new one to me. Most common FU-5 is w/pump over 96-hours. Concurrent Chemo and Rads are the given way to deal with NPC- saw a 5-segment seminar with leading C people from all over the world, and one of the few definites was that. I had no Chemo after the concurrent tx. Was wondering:

    Did you have a known Primary?

    How many places did they zap with the Rads? And do you know the "gy" amount?

    How was the "ball" administered/applied in your body?

     

    Like you, I returned to work a month after my last Rad session. Was a Shop Inspector at a very progressive metalworking factory, so a lot of walking and having to be mentally sharp, but with very little lifting. First couple weeks were slow, still using the Feeding Tube at work. Gradually experienced energy return when actual food could be tolerated- loved that Roadhouse Chili soup. Asking about the Rads because of long term side-effects. First negatives of note for me were in my mouth. The Tinnitus took around 6 years to start, so I was lucky w/that. Unlucky on some other things, though- BUT still alive, driving and taking care of myself.

    Congratulations, Curt, for making it thru the C tx experience w/extra FU-5.

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
    #33
    Glad to hear the news prayers are with you for NED always

    Glad to hear the news you are gaining appetite back and energy is coming back as well.  Saying prayers always for NED for the upcoming scans adn always for everyone NED blessings be upon us.

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #34
    I appreciate all the good thoughts!

    I started a new thread, so I haven't look at this one in a bit. Thanks for all the positive thoughts and sentiments!

    As far as 5 FU side effects, about half of my "brown" hair is gone, but it looks like black (and some strange silverish coloration ... LOL) is replacing it!

    I still have neuropathy, but my Oncologist tells me it should fade in a couple more months. My hands and forearms feel numb, and my feet feel like I'm walking on sand!

    My hearing isn't quite as good as it was, but I'm still generally able to follow a conversation.

    Overall, I feel very lucky - and again - thanks for all the well wishes and prayers!!

  • Dolphinswae
    Dolphinswae Member Posts: 6 Member
    #35
    Now I'm Worried

    In Aug-Sep of 2017, I went through 36 radiation treatments, but only two cisplatin and two carboplatin treatments and needed to stop due to side effects of both chemos. My doctor did not recommend 5FU because I have allergies to many medications and I agreed as well. The first PET scan in January of 2018 showed no sign of cancer. The latest PET in September 2019 still shows no cancer. I see that many others have had much more chemo than I did. It scares me that I could finish chemo. 

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #36
    Dolphinswae said:

    Now I'm Worried

    In Aug-Sep of 2017, I went through 36 radiation treatments, but only two cisplatin and two carboplatin treatments and needed to stop due to side effects of both chemos. My doctor did not recommend 5FU because I have allergies to many medications and I agreed as well. The first PET scan in January of 2018 showed no sign of cancer. The latest PET in September 2019 still shows no cancer. I see that many others have had much more chemo than I did. It scares me that I could finish chemo. 

    Hello, Dolphinswae

    I guess we're all worried, and that's why we're here to begin with. But, you're alive, and have received two positive PET Scans!

    At this point, I would recommend living life to the fullest, and if/when you have more challenges ... worry about them at that time!...

    All the best to you,

    Motorcycle guy

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #37
    4 months after finishing 5 FU - update

    It's been 4 months, since I finished treatment (the last being 5 FU).

    I have some hearing loss (probably due more to Cisplatin), and I'm told I'm a candidate for a hearing aid now. It seems like I can follow most conversations, but I do have to ask people to repeat themselves at times.

    I still have Neuropathy in my hands and feet. This is just a general "numb" feeling - not painful. I was told it would likely fade in 6 months ... which would make a nice Christmas gift!

    Overall, I'm feeling much better. I can eat just about anything, although since my sense of taste has faded a bit, I don't eat as much. But, I'm maintaining a healthier weight, about 35 pounds lighter than where I started. My energy levels are better overall!

    My prayers and good thoughts go out to anyone going through this - I wish you all the best!

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #38
    4 months after ... update

    I should mention that I had some tinnitus in my ears before I started treatment - so any hearing loss isn't all due to treatment, by any means.

    I also recently got a case of shingles, which may be due to a suppressed immune system. My girlfriend helped diagnose it very quickly, and made sure I got to a Doctor immediately - so I was very lucky! It has faded now - just a few spots on my forehead, and a little pain in eye and forehead.

    I was told there is a shingles vaccine now, which one can get at age 50. I STRONGLY RECOMMEND GETTING A SHINGLES VACCINE FOR EVERYONE - BUT ESPECIALLY FOR SOMEONE WHO IS GETTING READY, OR HAS UNDERGONE CANCER TREATMENT (per your Doctor's recommendation ... of course.)

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