Side effects of Fluorouracil (5FU) for NPC Nasopharyngeal Cancer
I was diagnosed with Nasopharyngeal Cancer back around the 1st of the year (2019). I have finished my radiation treatment, along with 3 rounds of Cisplatin chemo.
At this point, I am scheduled for 3 more follow up treatments of Chemo - Fluorouracil (5FU) along with Cisplatin. This will be slow released, via a "ball" over a 4-day period - once every 4 weeks.
Has anyone else had this treatment, and if so, would you be willing to help me know what to expect, as far as side effects?
I would very much appreciate it - thanks!
Comments
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I Had it and Have some Leftover Affects
I had throat cancer. I had a large tumor. They were going to give me the standard 35 rads and chemo beginning, middle, and at the end of my radiation treatments. But with the large tumor, the doctors were afraid the radiation would swell the tumor and cut off my breathing before it started shrinking the tumor. They were also reluctant to put in a trach because it was another place/opening I could get an infection So I was put in the hospital for 5 days of 24-hour chemo treatment. Then some time off and when my blood counts were back up I got another 5 day week of chemo. This was to shrink the tumor. I was to get 3 of these so before any of the treatments started I prayed to God that this treatment would shrink the tumor more than possibly expected. After the 2 treatments, my ENT put the scope up my nose and checked my throat and the tumor and he was totally amazed that the tumor had so dramatically shrunk. I praise God for this. So with these results, the 3rd planned 5-day chemo treatment was dropped. Then after my blood count went up I went back to the original plan-35 rad treatments over 7 weeks and chemo beginning, middle, and at the end.
So I say all this to let you know the extent of my chemo treatments. The types of chemo I had were Cisplatin, Taxotere, and 5-fluorouracil or mostly just referred to as 5-FU. I had this starting in Jan. 2013. The effects and leftovers I have are Neuropathy in my hands and feet and I can feel it extending into my calves and forearms a bit. This neuropathy is the worst leftover I have from the treatment and probably second is tinnitus and then dry mouth. I also have ringing in my ears (Tinnitus). I think I also have what they call chemo brain as I am somewhat foggy brain wise at times even maybe slightly light headed but do think clearly. I also have the dry mouth and other issues but some of it is from radiation, not chemo.
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This "chemo brain" that youwbcgaruss said:I Had it and Have some Leftover Affects
I had throat cancer. I had a large tumor. They were going to give me the standard 35 rads and chemo beginning, middle, and at the end of my radiation treatments. But with the large tumor, the doctors were afraid the radiation would swell the tumor and cut off my breathing before it started shrinking the tumor. They were also reluctant to put in a trach because it was another place/opening I could get an infection So I was put in the hospital for 5 days of 24-hour chemo treatment. Then some time off and when my blood counts were back up I got another 5 day week of chemo. This was to shrink the tumor. I was to get 3 of these so before any of the treatments started I prayed to God that this treatment would shrink the tumor more than possibly expected. After the 2 treatments, my ENT put the scope up my nose and checked my throat and the tumor and he was totally amazed that the tumor had so dramatically shrunk. I praise God for this. So with these results, the 3rd planned 5-day chemo treatment was dropped. Then after my blood count went up I went back to the original plan-35 rad treatments over 7 weeks and chemo beginning, middle, and at the end.
So I say all this to let you know the extent of my chemo treatments. The types of chemo I had were Cisplatin, Taxotere, and 5-fluorouracil or mostly just referred to as 5-FU. I had this starting in Jan. 2013. The effects and leftovers I have are Neuropathy in my hands and feet and I can feel it extending into my calves and forearms a bit. This neuropathy is the worst leftover I have from the treatment and probably second is tinnitus and then dry mouth. I also have ringing in my ears (Tinnitus). I think I also have what they call chemo brain as I am somewhat foggy brain wise at times even maybe slightly light headed but do think clearly. I also have the dry mouth and other issues but some of it is from radiation, not chemo.
This "chemo brain" that you mention, Russ, may be from thr Gabapentin that I believe you are taking. I know it makes me a little loopy, but not enough to not function. My nephew, who is a pharmacist, said that Gabapentin has been used to treat alcoholism since it has a similar effect.
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OK ERomanO ThanksERomanO said:This "chemo brain" that you
This "chemo brain" that you mention, Russ, may be from thr Gabapentin that I believe you are taking. I know it makes me a little loopy, but not enough to not function. My nephew, who is a pharmacist, said that Gabapentin has been used to treat alcoholism since it has a similar effect.
for the insight. That could be what is going on. Certainly worth considering. I will have to read up on Gabapentin more as I really have not done that. I did have supposed chemo brain and it seemed stronger after my treatment and it seemed to wane over a couple of years and almost go away but then seemed to come back and is just there in a mild state nothing I can't live with but you know something's going on just not quite right.
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5fuDarcyS said:5fu
My husband had 5fu during his radiation treatment along with pataxol and hydrea. It was given by infusion 24/7. He didn't have any noticeable side effects. Hopefully, soomeone else will post who is having or had 5fu given the same as yours.
I appreciate that Darcy, thank you!
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Leftover effectswbcgaruss said:I Had it and Have some Leftover Affects
I had throat cancer. I had a large tumor. They were going to give me the standard 35 rads and chemo beginning, middle, and at the end of my radiation treatments. But with the large tumor, the doctors were afraid the radiation would swell the tumor and cut off my breathing before it started shrinking the tumor. They were also reluctant to put in a trach because it was another place/opening I could get an infection So I was put in the hospital for 5 days of 24-hour chemo treatment. Then some time off and when my blood counts were back up I got another 5 day week of chemo. This was to shrink the tumor. I was to get 3 of these so before any of the treatments started I prayed to God that this treatment would shrink the tumor more than possibly expected. After the 2 treatments, my ENT put the scope up my nose and checked my throat and the tumor and he was totally amazed that the tumor had so dramatically shrunk. I praise God for this. So with these results, the 3rd planned 5-day chemo treatment was dropped. Then after my blood count went up I went back to the original plan-35 rad treatments over 7 weeks and chemo beginning, middle, and at the end.
So I say all this to let you know the extent of my chemo treatments. The types of chemo I had were Cisplatin, Taxotere, and 5-fluorouracil or mostly just referred to as 5-FU. I had this starting in Jan. 2013. The effects and leftovers I have are Neuropathy in my hands and feet and I can feel it extending into my calves and forearms a bit. This neuropathy is the worst leftover I have from the treatment and probably second is tinnitus and then dry mouth. I also have ringing in my ears (Tinnitus). I think I also have what they call chemo brain as I am somewhat foggy brain wise at times even maybe slightly light headed but do think clearly. I also have the dry mouth and other issues but some of it is from radiation, not chemo.
I appreciate you taking the time to describe this. Is neuropathy a tingly feeling in your extremities?
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Yes, but for me it can bemotorcycleguy said:Leftover effects
I appreciate you taking the time to describe this. Is neuropathy a tingly feeling in your extremities?
Yes, but for me it can be much more than tingly. It can feel like I've got limestone grit in my shoes, course steel wool in my shirt, sharp needle jabs or electronic shocks. It's mostly in my hands and feet but can appear almost anywhere. As I type this at 11:00 am I only feel like my my big toes are numb and my hands are cold. That's about it. I took a Gabapentin tablet at 10:30 because I just felt a shock or two and wanted to head it off before I go work out. I'm sure that I don't notice it as much now as I did when I got my first shocks, but that may be just a matter of getting used to it and my mind filters it out.
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Tingly feelingsERomanO said:Yes, but for me it can be
Yes, but for me it can be much more than tingly. It can feel like I've got limestone grit in my shoes, course steel wool in my shirt, sharp needle jabs or electronic shocks. It's mostly in my hands and feet but can appear almost anywhere. As I type this at 11:00 am I only feel like my my big toes are numb and my hands are cold. That's about it. I took a Gabapentin tablet at 10:30 because I just felt a shock or two and wanted to head it off before I go work out. I'm sure that I don't notice it as much now as I did when I got my first shocks, but that may be just a matter of getting used to it and my mind filters it out.
OK, thanks. So far, I've had (3) chemo sessions associated with my radiology (which is over). I haven't noticed anything, yet. But, I'll watch for the symptoms you describe.
I appreciate you taking the time to let me know. Thank you!
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You May Not Notice It Right Awaymotorcycleguy said:Tingly feelings
OK, thanks. So far, I've had (3) chemo sessions associated with my radiology (which is over). I haven't noticed anything, yet. But, I'll watch for the symptoms you describe.
I appreciate you taking the time to let me know. Thank you!
It may be later on and I think everyone is different some don't experience it at all or very little. If you start noticing it say something to your cancer team it has been known that they can sometimes give you different chemo. No one else Our local support group at the campus for H & N has neuropathy as bad as I do and most of them none at all out of about 15-20 people. For me, it is numbness, tingling, and sometimes it gets to the point of painful. The worst it bothers me is with shoes and socks on and it is just a huge relief to get them off.
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My symptoms started 3 monthsmotorcycleguy said:Tingly feelings
OK, thanks. So far, I've had (3) chemo sessions associated with my radiology (which is over). I haven't noticed anything, yet. But, I'll watch for the symptoms you describe.
I appreciate you taking the time to let me know. Thank you!
My symptoms started 3 months after finishing treatments (about 13 weeks post last chemo). I wasn't expeting it so it caught me off guard and freaked me out a little. But now I know that I'm not being tased or had dried blue spruce needles stuffed in shirt, so I just take it in stride, take my meds when needed and just keep doing what I'm doing.
Hopefully you won't get it at all. But if you do just know it's not the end of the world.
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Also With Neuropathy
Since it affects the nerves in your feet it can make you walk a bit unsteady or dopplick as the PA Dutch term goes on uneven ground. And as far as your hands you don't have the feeling you used to so you tend to drop things occasionally and have trouble doing fine or small precise work.
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Started Flourouracil, yesterday
Update: I went in for chemo, yesterday. I got the normal regimen, including Cisplatin, then the time-release unit, that delivers Flourouracil, over the next 4 days. (I get that back off on Friday). I'm a little tired, at work today - and I don't have much of an appetite. Other than that, I feel pretty good! I do have mild tingling in my finger tips, but no pain, and feeling is still O.K.
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Stay hydrated!motorcycleguy said:Started Flourouracil, yesterday
Update: I went in for chemo, yesterday. I got the normal regimen, including Cisplatin, then the time-release unit, that delivers Flourouracil, over the next 4 days. (I get that back off on Friday). I'm a little tired, at work today - and I don't have much of an appetite. Other than that, I feel pretty good! I do have mild tingling in my finger tips, but no pain, and feeling is still O.K.
After my 2nd chemo I couldn't even stand to drink water and consequently suffered dehydration on Fri that week. They took me up to the chemo lounge and hooked up a 2 liter bag of fluids to get me back to normal.
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Feedback from my first does of Flourouracil (5FU)
So - having the "ball" attached to me for a week was a pretty mild challenge, for my first "time-delay" session. I got it on, on a Monday - and off on Friday.
As far as side effects, this affected my mouth, tongue, lips, and throat more than Radiation ever did. It was challenging to eat and drink for about 10 days, after getting the ball removed. It was challenging to swallow, from tightness and pain - and I seemed to lose all appetite. After maintaining weight pretty well during Radiation, I bet I lost 8 pounds in a two-week period.
However, going on 3 weeks after 5FU "time release ball" removal, I'm starting to get appetite back strong and food is starting to taste good again.
I am scheduled for 1 or 2 more sessions of 5 FU (they've offered me a potential option to finish with just one more). I admit, I am NOT looking forward to going through the mouth pain, and associated challenges again!
But - as I will always remind people on here. Most of the side effects are temporary - but another 2-3 decades of life is another 2-3 decades of life.
Tell the people you love, that you love them. Hug those family members (parents, spouses, kids and grandkids etc). Find something to be happy about!!
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5FU cocktail
After completing 40 rounds of radiation treatment (once a day five days a week) in conjunction with once a week Erbitux treatments during the radiation therapy, I had a false negative PET scan post treatment nine weeks after my last treatment. Positive biopsies proved the cancer had not been completely killed, therefore, my medical oncologist ordered three rounds of chemotherapy which started in September 2017. I will never forget the nurses words as she hung the bags of Erbituxand Cisplatin on the IV pole and started the portable pump with the dose of 5FU in it. She said under her breath to me, "My God this is a huge dose of chemo you are about to get!" I finished the Erbitux and Cisplatin in clinic, and then was sent home with the pump and the remainder of the 46-hour dose of 5FU I was receiving.
In the beginning I felt pretty good, but by evening, after dinner, I began throwing up and ended up in bed. My wife did her best to keep me hydrated, by bolusing water into my feeding tube regularly, omly to have me throw it up immediately. Well 43-hours into my treatment of 5FU an ambulance had to be called to our home and me rushed to the hospital because I was dying. The 5FU treatment was stopped immediately at the ER and I was admitted into the hospital by the doctors. For the next four days I was comotose and the doctors were telling my wife that she may as well be getting my business in order, as they did not beleive that I was going to live. But miracuously, I woke up on the end of the forth day and began responding with some coherentcy. I spent a total of 17-days in the hospital before being released to go home, but only with in home nursing care for the next three weeks. In the end, the reaction I had to the chemo cocktail which included the real nasty stuff, 5FU, caused minor brain damage and damaged my kidneys to the level of being one step away from having to do kidney dialysis for the rest of my life. I can never be given regular chemotherapy (which is the frontline in killing many types of cancers at this time) for the rest of my life, thanks to the 5FU.
In hindsight, as has been said by other oncologist who have reveiwed my medical records and examined me, if only I had been placed in a hospital and given this dose in a medically controlled environment, this situation most likely would have never happened to me, and the 5FU should have been given to me in a much slower dose spread out over several days rather than giving me a blast loading of this cocktail in less than a 48-hour period like was done. Not trying to scare you, rather just show you the reality of what can happen when receiving 5FU as part of the arsenal against your cancer. I just don't want to see what happened to me, happen to someone else. It doesn't have to be that way, unless you end up with an aggressive oncologist like I did, and one who has the reputation of being so amongst the local medical community. Ny daughter in law is a part of that community, being a local surgical nurse working on her Masters Degree in nursing administration.
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58,
I'm very sorry to hear about your terrible experience with the 5FU! I'm certainly not an expert, but my dose goes in over 96 hours, and 48 hours sounds pretty aggressive to me. I certainly hope you're doing a little better, today - and that you're back on your bike (or bikes) sooner than you expect to be.
Now, the most important thing. Do you really have a '58 Sporty (Ironhead?)? I have an '06 Roadster (Sporty), an 01 Screamin' Eagle Road Glide, and I just picked up a '15 Fat Bob (Dyna ... not one of the new "Softails"! LOL). In fact, one of the first times I rode it, I had my first time-release Flourouracil pouch attached.
My reactions had more to do with mouth pain, and trouble with appetite. But, I wasn't expecting the side effects, and this time I will - and I think it will be easier the second time around. After this, I just have one more sesssion at the end of June.
Again - I wish you all the best, and I'm sending a prayer that you get a NED (No Evidence of Disease) - and never have to worry about chemo again, in your lifetime!!
Motorcycleguy
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Update on 2nd dose of Flourouracil (5 FU)
I finished up the 2nd dose of 5 FU - got the "ball" taken off on Saturday.
The week following this, during my first dose, was challenging, but this time I knew what to expect, and its not so bad.
The main solutions seem to be to stay on the smoothies, my GF was making - and to make sure I stay well hydrated. My mouth is still a little painful and numb, and the appetite is lower than usual, but this time it feels manageable.
My Oncologist recommends a third 5 FU session at the end of June. Somewhere around July 4th, I should be DONE with treatments and side effects, and well on my way to "normal" life.
I wish all Cancer patients the best of luck with treatment and recovery!
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Advice on Flourouracil (5FU)
So, if you have to get 5FU - I recommend the following:
1. Get the "magic mouthwash" (mouth numbing prescription).
2. Drink as much water as you can.
3. If you're offered a saline drip, when you get the "ball" off - get it.
4. Keep up with the nutrition, whether by feeding tube, smoothie or whatever works.
5. Try to take a couple days off, after getting the "ball" off, and REST!
6. Know that it takes about a week, after getting the "ball" off, to feel better.
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"Last(?)" Flourouracil Session Notes:
I am on my 3rd, and hopefully LAST Flourouracil treatment, this week. I had the Cisplatin infusion, and got the Flourouracil "ball" put on Monday - and will get it taken off on Friday. Then I will ring the bell, and look forward to seeing a NED, on follow up checkups .... in the near future.
Anyway, these sessions seem to get easier, as the first one was really tough, the second, not so bad, and so far this one is feeling easier still (so far). I find a lot of the "bad" effects (mouth, tongue and throat pain) are actually worse the week AFTER the ball comes off.
This time, I tried something different. I ate 6 eggs, a bowl of oatmeal and a peanut butter sandwich for breakfast, and drank about 2 gallons of water, the day I got the ball put on. As soon as I got home, I drank Boost, and ate a very large bowl of chicken soup.
I have found a few things seem to help with side effects: LOTS of hydration, as much good nutrition as you can take in, and extra rest (naps).
Side effects have been fairly minimal. When I have the ball on, and after the Cisplatin, I find myself a little light headed (like I'm slowly sipping wine). It's actually kind of pleasant, although I'm at work, and don't seem to be able to get as "serious" about it as I normally do. In a couple days, I will be exhausted, and fall asleep at my desk. Last session, the second week, I actually took a couple days off, (and went home and napped and took it easy).
My hair is getting thinner on my head, but they tell me that is temporary. My girlfriend has me taking Biotin, to pre-start the regrowth process. Other than that I notice just a bit of neuropathy (finger tips feel a bit numb, and occasionally I walk like I'm on a ship, in the middle of the night, when I get up to pee.)
I hope this helps anyone who is going through Flourouracil, or other follow up chemo treatments.
My big take-away with the Cancer experience, is that it allowed me to "read ahead" on my book of life, to the last chapter. It is certainly an eye-opener, and a huge reminder that life is precious, and one should remember to tell the people he/she loves - that you love them .... often!!
Have a great day!
motorcycleguy
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