Nasal passages, etc. never the same after 5FU?

PatchAdams

Since I finished chemo over 4 years ago I've had lots of sinus type problems.  I'm blame it on the 5FU in the FOLFOX.  My nose was like raw meat for the 6 months of chemo and for a few months afterwards.  The slightest thing causes swelling and my nose to look red/ raw.  Now I have a swollen nasal turbinate which is a nuisance if it gets too large because it feels like you can't breathe through that side of your nose.  I have a nasal spray (non steroid) and use Ayr. 

Am I the only one with lasting sinus type problems? 

 

Oh...... and I've now lost a total of 3 teeth since chemo ended. Thankfully two are the next to the last molars and one is 3rd from the back so it's hard to chew well but no one can 'see' that I've lost teeth. 

 

Constipation......  I was born constipated and TRY my best to have a daily bowel movement because I don't ever want to have an obstruction but Benefibre, Wheaties, Life, Raisin Brain, Chocolate Covered Raisins, Hot Coffee help but every two weeks or so, I struggle for 3 - 4 days.  

 

Suggestions?  Thoughts?  

marbleotis

Some helpful tips

For the constipation:

 

I use milled flax seed in my gluten free oatmeal.  It really works,  I did not have constipation issues but use it to keep myself very regular.  We all know that's important for us.  I also have a bananna daily, organic diet, I watch out for gluten - be careful of cereals they are very processed.

 

I am on an mediterrain-based, organic diet.  I am very careful what I eat and go to the gym now 3x per week.

 

Hope this helps.

 

devotion10

marbleotis said:

Some helpful tips

For the constipation:

 

I use milled flax seed in my gluten free oatmeal.  It really works,  I did not have constipation issues but use it to keep myself very regular.  We all know that's important for us.  I also have a bananna daily, organic diet, I watch out for gluten - be careful of cereals they are very processed.

 

I am on an mediterrain-based, organic diet.  I am very careful what I eat and go to the gym now 3x per week.

 

Hope this helps.

 

Marbleotis - good job ...

you are taking wonderful care of yourself.  I am inspired to force myself to go get on my treadmill.  It is so cold out that I haven't been walking, not because of the snow, but the return of the polar vortex to my area.

Don't want to get off of Patch's concerns ... but really wanted to compliment you. Peace. ~ Cynthia

devotion10

Some ideas ...

I hope some other folks with personal experience will respond also. 

Nasal problems: It sounds as if you may have experienced mucositis from your 5-FU treatments.  Other chemo agents are also mucotoxic but I don’t know what else you had. Most of the time it seems folks are cautioned about and may experience sensitivity or potential sores in the mouth. But, my research indicates that mucositis is not limited to the mouth but can extend throughout the entire gastrointestinal tract and possibly affects all other mucosal surfaces such as those of the nasal passages, eyes, and genitourinary and respiratory tracts.  As a result of cell death in reaction to chemotherapy or radiotherapy, the mucosal lining becomes thin, may slough off and then become red, inflamed and ulcerated.  When you describe the condition of your nose during six months of treatment and then a few months after … maybe this was your situation?

One thing that helped my husband was nasal irrigation.  He began his treatments with a rather large benign nasal polyp that became very irritated and there was concern for inflammation, infection, and ulceration. He tried various drugstore irrigation products but found he preferred using a ceramic neti pot with a salt water rinse of ½ tsp salt and 8 ounces filtered room temp or lukewarm water.  If you have chronic sinus infections at present I am unclear of the safety of this as it may spread infection.  A humidifier can also help soothe and dampen dry nasal passages or even the grandma method of steaming up a bathroom for temp relief.  Placing a dab of petroleum jelly inside dry sinuses can help; just don’t let it migrate down your throat, as you don’t want it in your lungs. Any chance the nasal spray you are using may contain ingredients that irritate your nasal passages even though it does not contain a steroid? Considered surgery for the nasal turbinate?

Teeth loss: Not knowing your dental condition prior to chemo it is hard to say. Some treatments and medications can lower saliva production and increase the risk of dental caries; my son takes one of these medications and we have to be very diligent with dental care. I have him gargle with a salt and baking soda solution to aid his oral hygiene and mucosal health.  My son’s dentist suggests: not to drink alcohol or use mouthwashes that contain alcohol, chew sugar-free gum because chewing stimulates the salivary glands, keep mouth moist with regular sipping of water during the day, use Biotene mouthwash which is non-alcoholic, and eat crunchy, fibrous foods that help remove bacteria from the teeth like apples, celery, carrots, etc.

Research I did for my husband indicated that bacteria and fungi that live in the mouth may develop into an infection when the immune system is not working well, or when white blood cell counts are low as a result of treatments.  But then since chemotherapy can affect tooth enamel, it can also create the risk of long-term dental problems which may be part of the situation in your case.

Constipation has been covered by others on the site so I won’t go in to that one but a keyword research I bet will bring up some good tips.

Peace. ~ Cynthia

PatchAdams

marbleotis said:

Some helpful tips

For the constipation:

 

I use milled flax seed in my gluten free oatmeal.  It really works,  I did not have constipation issues but use it to keep myself very regular.  We all know that's important for us.  I also have a bananna daily, organic diet, I watch out for gluten - be careful of cereals they are very processed.

 

I am on an mediterrain-based, organic diet.  I am very careful what I eat and go to the gym now 3x per week.

 

Hope this helps.

 

Answers

I've been on the Med. diet for 5 years now. NO red meat and very little processed foods.  I use the cereals when all else fails to produce a normal bowel movement.  I just had a colonoscopy and everything was perfect so not concerned about that BUT I don't ever want to have an obstruction so am trying to stay on top of this.

 

Flax Seed: Since I have diverticula pouches (few), I avoid all small seeds.  I eat Okra, Squash, etc. with no problems but have been careful to not eat anything with poppy seeds, corn, etc.  You said 'milled', so I'm guessing that wouldn't be something that would easily get caught in a pouch and cause a problem??? 

PatchAdams

devotion10 said:

Some ideas ...

I hope some other folks with personal experience will respond also. 

Nasal problems: It sounds as if you may have experienced mucositis from your 5-FU treatments.  Other chemo agents are also mucotoxic but I don’t know what else you had. Most of the time it seems folks are cautioned about and may experience sensitivity or potential sores in the mouth. But, my research indicates that mucositis is not limited to the mouth but can extend throughout the entire gastrointestinal tract and possibly affects all other mucosal surfaces such as those of the nasal passages, eyes, and genitourinary and respiratory tracts.  As a result of cell death in reaction to chemotherapy or radiotherapy, the mucosal lining becomes thin, may slough off and then become red, inflamed and ulcerated.  When you describe the condition of your nose during six months of treatment and then a few months after … maybe this was your situation?

One thing that helped my husband was nasal irrigation.  He began his treatments with a rather large benign nasal polyp that became very irritated and there was concern for inflammation, infection, and ulceration. He tried various drugstore irrigation products but found he preferred using a ceramic neti pot with a salt water rinse of ½ tsp salt and 8 ounces filtered room temp or lukewarm water.  If you have chronic sinus infections at present I am unclear of the safety of this as it may spread infection.  A humidifier can also help soothe and dampen dry nasal passages or even the grandma method of steaming up a bathroom for temp relief.  Placing a dab of petroleum jelly inside dry sinuses can help; just don’t let it migrate down your throat, as you don’t want it in your lungs. Any chance the nasal spray you are using may contain ingredients that irritate your nasal passages even though it does not contain a steroid? Considered surgery for the nasal turbinate?

Teeth loss: Not knowing your dental condition prior to chemo it is hard to say. Some treatments and medications can lower saliva production and increase the risk of dental caries; my son takes one of these medications and we have to be very diligent with dental care. I have him gargle with a salt and baking soda solution to aid his oral hygiene and mucosal health.  My son’s dentist suggests: not to drink alcohol or use mouthwashes that contain alcohol, chew sugar-free gum because chewing stimulates the salivary glands, keep mouth moist with regular sipping of water during the day, use Biotene mouthwash which is non-alcoholic, and eat crunchy, fibrous foods that help remove bacteria from the teeth like apples, celery, carrots, etc.

Research I did for my husband indicated that bacteria and fungi that live in the mouth may develop into an infection when the immune system is not working well, or when white blood cell counts are low as a result of treatments.  But then since chemotherapy can affect tooth enamel, it can also create the risk of long-term dental problems which may be part of the situation in your case.

Constipation has been covered by others on the site so I won’t go in to that one but a keyword research I bet will bring up some good tips.

Peace. ~ Cynthia

Answers

I only had FOLFOX. 

 

 I had a few mouth sores during chemo but my poor nose was painful and raw.  I had one true nosebleed but a bloody nose every day.  I don't think it ever went back to normal.

The nasal spray is something the doctor gave me to prevent irritation from allergins. Doc thinks my problem is that I'm no longer able to deal with the allergens.  Instead of Vaseline, I'm using Ayr.  It isn't as sticky and feels 'cool'.  Again, my breathing isn't closed off on that side so it's not an extreme case. 

Surgery...... NOPE!  Mine is not closed but one side is enlarged. I know new treatments are being done by some doctors, but there have been cases of massive bleeding and side effects can be 'empty nasal syndrome'.  My Daddy had surgery when he was in his 40's on his nose and sometimes he has to tie a handkercheif around his face just so he can use his hands. His drainage can be constant and heavy,  

Teeth:  I was raised a poor white child on Kool-Aide, Coke and Sweet tea.  I've had so many cavities but the lost teeth just cracked. One cracked vertical right in the middle and the other two cracked at the gum line.  I gave up Coke about 6 years ago and haven't had a cavity since.  

I've never noticed anyone else complaining of sinus / nasal problems years after the end of chemo and thought I'd ask.  

I know a lot of people have lost teeth after having chemo and a lot of people (including me) had to have their gall bladder removed after chemo.  

 

I found a couple of articles that blame chemo brain on 5FU and eyesight problems on 5FU. 

Lovekitties

devotion10 said:

Some ideas ...

I hope some other folks with personal experience will respond also. 

Nasal problems: It sounds as if you may have experienced mucositis from your 5-FU treatments.  Other chemo agents are also mucotoxic but I don’t know what else you had. Most of the time it seems folks are cautioned about and may experience sensitivity or potential sores in the mouth. But, my research indicates that mucositis is not limited to the mouth but can extend throughout the entire gastrointestinal tract and possibly affects all other mucosal surfaces such as those of the nasal passages, eyes, and genitourinary and respiratory tracts.  As a result of cell death in reaction to chemotherapy or radiotherapy, the mucosal lining becomes thin, may slough off and then become red, inflamed and ulcerated.  When you describe the condition of your nose during six months of treatment and then a few months after … maybe this was your situation?

One thing that helped my husband was nasal irrigation.  He began his treatments with a rather large benign nasal polyp that became very irritated and there was concern for inflammation, infection, and ulceration. He tried various drugstore irrigation products but found he preferred using a ceramic neti pot with a salt water rinse of ½ tsp salt and 8 ounces filtered room temp or lukewarm water.  If you have chronic sinus infections at present I am unclear of the safety of this as it may spread infection.  A humidifier can also help soothe and dampen dry nasal passages or even the grandma method of steaming up a bathroom for temp relief.  Placing a dab of petroleum jelly inside dry sinuses can help; just don’t let it migrate down your throat, as you don’t want it in your lungs. Any chance the nasal spray you are using may contain ingredients that irritate your nasal passages even though it does not contain a steroid? Considered surgery for the nasal turbinate?

Teeth loss: Not knowing your dental condition prior to chemo it is hard to say. Some treatments and medications can lower saliva production and increase the risk of dental caries; my son takes one of these medications and we have to be very diligent with dental care. I have him gargle with a salt and baking soda solution to aid his oral hygiene and mucosal health.  My son’s dentist suggests: not to drink alcohol or use mouthwashes that contain alcohol, chew sugar-free gum because chewing stimulates the salivary glands, keep mouth moist with regular sipping of water during the day, use Biotene mouthwash which is non-alcoholic, and eat crunchy, fibrous foods that help remove bacteria from the teeth like apples, celery, carrots, etc.

Research I did for my husband indicated that bacteria and fungi that live in the mouth may develop into an infection when the immune system is not working well, or when white blood cell counts are low as a result of treatments.  But then since chemotherapy can affect tooth enamel, it can also create the risk of long-term dental problems which may be part of the situation in your case.

Constipation has been covered by others on the site so I won’t go in to that one but a keyword research I bet will bring up some good tips.

Peace. ~ Cynthia

Neti Pot caution

When using a neti pot be sure to take proper care of purity of water, amount of salt and temp of the water.

http://www.neti-netti-pot.com/neti-pot-dangers.html

devotion10

PatchAdams said:

Answers

I've been on the Med. diet for 5 years now. NO red meat and very little processed foods.  I use the cereals when all else fails to produce a normal bowel movement.  I just had a colonoscopy and everything was perfect so not concerned about that BUT I don't ever want to have an obstruction so am trying to stay on top of this.

 

Flax Seed: Since I have diverticula pouches (few), I avoid all small seeds.  I eat Okra, Squash, etc. with no problems but have been careful to not eat anything with poppy seeds, corn, etc.  You said 'milled', so I'm guessing that wouldn't be something that would easily get caught in a pouch and cause a problem??? 

Wow … your diet also sounds great.

Another person taking good control of nutrition. I know how challenging it is to implement a healthy diet as an adult after a childhood of sweet tea ... I come from a long line of Texans and Louisiana swamp folk who did not exactly connect food intake with health, good or bad. 

Peace. ~ Cynthia

devotion10

PatchAdams said:

Answers

I only had FOLFOX. 

 

 I had a few mouth sores during chemo but my poor nose was painful and raw.  I had one true nosebleed but a bloody nose every day.  I don't think it ever went back to normal.

The nasal spray is something the doctor gave me to prevent irritation from allergins. Doc thinks my problem is that I'm no longer able to deal with the allergens.  Instead of Vaseline, I'm using Ayr.  It isn't as sticky and feels 'cool'.  Again, my breathing isn't closed off on that side so it's not an extreme case. 

Surgery...... NOPE!  Mine is not closed but one side is enlarged. I know new treatments are being done by some doctors, but there have been cases of massive bleeding and side effects can be 'empty nasal syndrome'.  My Daddy had surgery when he was in his 40's on his nose and sometimes he has to tie a handkercheif around his face just so he can use his hands. His drainage can be constant and heavy,  

Teeth:  I was raised a poor white child on Kool-Aide, Coke and Sweet tea.  I've had so many cavities but the lost teeth just cracked. One cracked vertical right in the middle and the other two cracked at the gum line.  I gave up Coke about 6 years ago and haven't had a cavity since.  

I've never noticed anyone else complaining of sinus / nasal problems years after the end of chemo and thought I'd ask.  

I know a lot of people have lost teeth after having chemo and a lot of people (including me) had to have their gall bladder removed after chemo.  

 

I found a couple of articles that blame chemo brain on 5FU and eyesight problems on 5FU. 

Patch … hopefully others who have had nasal problems

will share their experiences and perhaps their comfort solutions. 

I understand about not having surgery.  My husband never wanted his nasal polyp removed even though it was a constant source of irritation for him.  He felt like it was an optional surgery and he had enough to deal with.

Peace. ~ Cynthia

Trubrit

devotion10 said:

Some ideas ...

I hope some other folks with personal experience will respond also. 

Nasal problems: It sounds as if you may have experienced mucositis from your 5-FU treatments.  Other chemo agents are also mucotoxic but I don’t know what else you had. Most of the time it seems folks are cautioned about and may experience sensitivity or potential sores in the mouth. But, my research indicates that mucositis is not limited to the mouth but can extend throughout the entire gastrointestinal tract and possibly affects all other mucosal surfaces such as those of the nasal passages, eyes, and genitourinary and respiratory tracts.  As a result of cell death in reaction to chemotherapy or radiotherapy, the mucosal lining becomes thin, may slough off and then become red, inflamed and ulcerated.  When you describe the condition of your nose during six months of treatment and then a few months after … maybe this was your situation?

One thing that helped my husband was nasal irrigation.  He began his treatments with a rather large benign nasal polyp that became very irritated and there was concern for inflammation, infection, and ulceration. He tried various drugstore irrigation products but found he preferred using a ceramic neti pot with a salt water rinse of ½ tsp salt and 8 ounces filtered room temp or lukewarm water.  If you have chronic sinus infections at present I am unclear of the safety of this as it may spread infection.  A humidifier can also help soothe and dampen dry nasal passages or even the grandma method of steaming up a bathroom for temp relief.  Placing a dab of petroleum jelly inside dry sinuses can help; just don’t let it migrate down your throat, as you don’t want it in your lungs. Any chance the nasal spray you are using may contain ingredients that irritate your nasal passages even though it does not contain a steroid? Considered surgery for the nasal turbinate?

Teeth loss: Not knowing your dental condition prior to chemo it is hard to say. Some treatments and medications can lower saliva production and increase the risk of dental caries; my son takes one of these medications and we have to be very diligent with dental care. I have him gargle with a salt and baking soda solution to aid his oral hygiene and mucosal health.  My son’s dentist suggests: not to drink alcohol or use mouthwashes that contain alcohol, chew sugar-free gum because chewing stimulates the salivary glands, keep mouth moist with regular sipping of water during the day, use Biotene mouthwash which is non-alcoholic, and eat crunchy, fibrous foods that help remove bacteria from the teeth like apples, celery, carrots, etc.

Research I did for my husband indicated that bacteria and fungi that live in the mouth may develop into an infection when the immune system is not working well, or when white blood cell counts are low as a result of treatments.  But then since chemotherapy can affect tooth enamel, it can also create the risk of long-term dental problems which may be part of the situation in your case.

Constipation has been covered by others on the site so I won’t go in to that one but a keyword research I bet will bring up some good tips.

Peace. ~ Cynthia

Two out of three

I too have nasal problems. Mine are sores and slight bleeding. I try not to blow too hard and use q-tips (with caution) to remove those tough boogers. No sinus problems though. 

As for constipation, it scares the heck out of me, because, like most of us, that was one of the signs that something was wrong.  I am actually more regular now that I've evre been in my life, sometimes too regular.  I eat Shredded Wheat with a Banana every morning, and I swear that keeps things moving for me. 

I'm happy to her about your clear colonoscopy. It sounds like you are really working on staying healthy with a good diet. Keep it up.

dmj101

Yes to all of the above//

I have major tooth issues from the chemo.. as chemo is bad for the bones and teeth are in that family.. the sores at times are bad but the only real this that helps them is Lysterine.

The sinuses are horrible and complicated by Avastin.. I pass rocks thru my nose now and even have to dig them.. I have always had bad sinuss as I had a perferorated septum.. which is now not there at all I think as the rocks attach and and my whole face is in pain to I remove them.. Ayr and Ocean like products are the only solution at this point though i think zyrtek is helping somewhat.

When I take 5 fu.. I used to constipate the week following the treatment.. now i am takine Xeloda and don't notice any constipation..

 

 

ron50

G'day Patch

         All of the above over the years. My sinuses have always been bad with hayfever and allergies. Chemo did not help and I eventually suffered a sieries of massive bleeds. I was eventually referred to ann ear nose and throat specialist and he found an anneurism in there . He used 9 cauterising sticks to clean it up. I take two phenergan a day every day. Teeth ,I lost at least six to root fillings during chemo and another three to methotrexate(all root fillings) I wonder how many cyclosporin will wipe out? Constipation, well I have had a few blockages in fifteen years. I don't have any worries now as when I had my gallbladder out I suffered bile salt malabsorbtion resulting in chronic diarreah. I take questran lite to control that. I found my constipation always coincided with cooler times of the year when I forgot to drink enough water. I found drinking a lot of lukewarm water usually got me going. Cheers Ron.