› Forums › General Melanoma Community › Keytruda Causing Lip Reaction
- This topic has 15 replies, 5 voices, and was last updated 8 years, 3 months ago by
Redlo8.
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- September 22, 2016 at 5:07 am
Hi Everyone,
My wife is 55 and has Stage 4 Metatastic Melanoma, She has been on Keytruda for 18 months. It is doing its job very well with all "spots" gone or shrinking significantly.
She has a few of the common side effects like tiredness, skin irratations etc but one that seems a little less common is a lip reaction.
Her bottom lip (top lip is fine) has swollen to twice its size and is constantly bleeding or forming a blood blister, overnight it scabs up only to fall off in the shower and start the process all over again.
While not extremely painful it certainly looks very nasty. Along with this her gums also regularly bleed and she has bad breath from the constant blood in her mouth and the innability to brush her teeth very hard.
I have searched all over the internet for other peoples's stories that may offer a solution but have been unable to find many references to this ailment.
Her doctors have prescribed so many different creams and ointments, speciality bandages etc but nothing has made much difference, if anything they make it worse. The most effective product to date has been petroleum jelly, it is not a cure for the lip but it seems to hold it at the current level for a long time.
She has had this now for approx 12 months with it steadily getting worse.
Has anyone had this issue or know of a product that may help the situation? I often wonder if it is psoriasis (she got this on her hand and arm when Keytruda was first injected) but this cleared up after using a product called Moo Goo. Unfortuantely this product hasn't helped her lip.
Any info would be greatly appreciated, and if anyone would like some positve news on Keytruda or would like to ask questions please feel free to ask.
Kind Regards
- Replies
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- September 22, 2016 at 2:22 pm
Tea Tree Oil may help:
https://draxe.com/tea-tree-oil-uses-benefits/
I have seen toothpaste and toothpicks also shampoo with this ingredient in a health store. It is supposed to help with bad breath and gum problems.
or try some Coconut oil
Prevents Gum Disease and Tooth Decay
Oil pulling with coconut oil has been used for centuries as a way to cleanse the mouth of bacteria and help heal periodontal disease. Coconut oil is one of the most effective oils for oil pulling due to it’s high concentration of antibacterial MCFA’s.
By swishing the oil in your mouth the oil denatures the bacteria and sticks to it. Removing oral bacteria greatly reduces your risk of periodontal disease. If you want to heal your gums and repair your teeth, I recommend coconut oil pulling 3x a week for 20 minutes a day.
Improves Skin Issues (burns, eczema, dandruff, dermatitis, and psoriasis)
Coconut oil is wonderful as a face cleanser, moisturizer and sun screen, but also it can treat many skin disorders. The fatty acids (Caprylic and Lauric) in coconut oil reduce inflammation internally and externally and moisturize making them a great solution for all types of skin conditions.
It protects the skin and has many antioxidants that make it ideal for healing the skin. In addition the antimicrobial properties balance out the candida or fungal sources that can cause many skin conditions.
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- September 23, 2016 at 10:28 pm
Although I have not been on Keytruda I have had rash a lot with Tafinlar and Mekinist along with bleeding inside my nose. I have had great success with Aquaphor that does not have petroleum in it. I have heard great things of coconut nut oil but have not used it myself. I did breakout a lot when I first started Tafinlar/Mekinist combo and was able to get more help from my dermatologist. You may want to give them a shout for help.
I wish you the best controlling the side effects because that is so important to stay strong.
Take care
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- September 23, 2016 at 10:28 pm
Although I have not been on Keytruda I have had rash a lot with Tafinlar and Mekinist along with bleeding inside my nose. I have had great success with Aquaphor that does not have petroleum in it. I have heard great things of coconut nut oil but have not used it myself. I did breakout a lot when I first started Tafinlar/Mekinist combo and was able to get more help from my dermatologist. You may want to give them a shout for help.
I wish you the best controlling the side effects because that is so important to stay strong.
Take care
-
- September 23, 2016 at 10:28 pm
Although I have not been on Keytruda I have had rash a lot with Tafinlar and Mekinist along with bleeding inside my nose. I have had great success with Aquaphor that does not have petroleum in it. I have heard great things of coconut nut oil but have not used it myself. I did breakout a lot when I first started Tafinlar/Mekinist combo and was able to get more help from my dermatologist. You may want to give them a shout for help.
I wish you the best controlling the side effects because that is so important to stay strong.
Take care
-
- September 22, 2016 at 2:22 pm
Tea Tree Oil may help:
https://draxe.com/tea-tree-oil-uses-benefits/
I have seen toothpaste and toothpicks also shampoo with this ingredient in a health store. It is supposed to help with bad breath and gum problems.
or try some Coconut oil
Prevents Gum Disease and Tooth Decay
Oil pulling with coconut oil has been used for centuries as a way to cleanse the mouth of bacteria and help heal periodontal disease. Coconut oil is one of the most effective oils for oil pulling due to it’s high concentration of antibacterial MCFA’s.
By swishing the oil in your mouth the oil denatures the bacteria and sticks to it. Removing oral bacteria greatly reduces your risk of periodontal disease. If you want to heal your gums and repair your teeth, I recommend coconut oil pulling 3x a week for 20 minutes a day.
Improves Skin Issues (burns, eczema, dandruff, dermatitis, and psoriasis)
Coconut oil is wonderful as a face cleanser, moisturizer and sun screen, but also it can treat many skin disorders. The fatty acids (Caprylic and Lauric) in coconut oil reduce inflammation internally and externally and moisturize making them a great solution for all types of skin conditions.
It protects the skin and has many antioxidants that make it ideal for healing the skin. In addition the antimicrobial properties balance out the candida or fungal sources that can cause many skin conditions.
-
- September 22, 2016 at 2:22 pm
Tea Tree Oil may help:
https://draxe.com/tea-tree-oil-uses-benefits/
I have seen toothpaste and toothpicks also shampoo with this ingredient in a health store. It is supposed to help with bad breath and gum problems.
or try some Coconut oil
Prevents Gum Disease and Tooth Decay
Oil pulling with coconut oil has been used for centuries as a way to cleanse the mouth of bacteria and help heal periodontal disease. Coconut oil is one of the most effective oils for oil pulling due to it’s high concentration of antibacterial MCFA’s.
By swishing the oil in your mouth the oil denatures the bacteria and sticks to it. Removing oral bacteria greatly reduces your risk of periodontal disease. If you want to heal your gums and repair your teeth, I recommend coconut oil pulling 3x a week for 20 minutes a day.
Improves Skin Issues (burns, eczema, dandruff, dermatitis, and psoriasis)
Coconut oil is wonderful as a face cleanser, moisturizer and sun screen, but also it can treat many skin disorders. The fatty acids (Caprylic and Lauric) in coconut oil reduce inflammation internally and externally and moisturize making them a great solution for all types of skin conditions.
It protects the skin and has many antioxidants that make it ideal for healing the skin. In addition the antimicrobial properties balance out the candida or fungal sources that can cause many skin conditions.
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- September 22, 2016 at 6:39 pm
Hi
Might be worth searching the forum for mouth sores /mouth ulcers/oral mucositis. I know Celeste has posted some things that might be useful although I think she was on a different Pd1.
Some mouth washes may help..
Have you ruled out thrush ?
Am confused by the involvement of the bottom lip but not the top lip but with involvement of gums etc.
Sorry no personal experience here but hope you find something that helps more than Vaseline soon.
Best wishes
Deb
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- September 22, 2016 at 6:39 pm
Hi
Might be worth searching the forum for mouth sores /mouth ulcers/oral mucositis. I know Celeste has posted some things that might be useful although I think she was on a different Pd1.
Some mouth washes may help..
Have you ruled out thrush ?
Am confused by the involvement of the bottom lip but not the top lip but with involvement of gums etc.
Sorry no personal experience here but hope you find something that helps more than Vaseline soon.
Best wishes
Deb
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- September 22, 2016 at 6:39 pm
Hi
Might be worth searching the forum for mouth sores /mouth ulcers/oral mucositis. I know Celeste has posted some things that might be useful although I think she was on a different Pd1.
Some mouth washes may help..
Have you ruled out thrush ?
Am confused by the involvement of the bottom lip but not the top lip but with involvement of gums etc.
Sorry no personal experience here but hope you find something that helps more than Vaseline soon.
Best wishes
Deb
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- September 23, 2016 at 5:47 pm
I have been thinking about this a lot. As it is gums and bottom lip only, I wonder if it is something in her saliva? That would explain why the pertroleum jelly helped.
Is there an specialist on mouth problems that you could be referred to?
Like someone else, I did wonder about thrush.
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- September 26, 2016 at 3:24 am
Thank You to everyone that has replied, it is very much appreciated.
I didnt go into the whole gammet of treatments and test the doctors have done on Di's lip but suffice to say everything you guy's have suggested has been tested for and all have come back negative.
Just this weekend she was given another "cream" to try from the Cancer Clinic and it made the situation worse again.
The coconut product is about the only thing we havent tried from all the suggestions. We will do so ASAP.
Once again thank you all for the time you took to reply. If anything changes I will let you know and please if anyone has a similar issue and finds a product that might help let us know.
Kind Regards
Scott
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- September 26, 2016 at 3:24 am
Thank You to everyone that has replied, it is very much appreciated.
I didnt go into the whole gammet of treatments and test the doctors have done on Di's lip but suffice to say everything you guy's have suggested has been tested for and all have come back negative.
Just this weekend she was given another "cream" to try from the Cancer Clinic and it made the situation worse again.
The coconut product is about the only thing we havent tried from all the suggestions. We will do so ASAP.
Once again thank you all for the time you took to reply. If anything changes I will let you know and please if anyone has a similar issue and finds a product that might help let us know.
Kind Regards
Scott
-
- September 26, 2016 at 3:24 am
Thank You to everyone that has replied, it is very much appreciated.
I didnt go into the whole gammet of treatments and test the doctors have done on Di's lip but suffice to say everything you guy's have suggested has been tested for and all have come back negative.
Just this weekend she was given another "cream" to try from the Cancer Clinic and it made the situation worse again.
The coconut product is about the only thing we havent tried from all the suggestions. We will do so ASAP.
Once again thank you all for the time you took to reply. If anything changes I will let you know and please if anyone has a similar issue and finds a product that might help let us know.
Kind Regards
Scott
-
- September 23, 2016 at 5:47 pm
I have been thinking about this a lot. As it is gums and bottom lip only, I wonder if it is something in her saliva? That would explain why the pertroleum jelly helped.
Is there an specialist on mouth problems that you could be referred to?
Like someone else, I did wonder about thrush.
-
- September 23, 2016 at 5:47 pm
I have been thinking about this a lot. As it is gums and bottom lip only, I wonder if it is something in her saliva? That would explain why the pertroleum jelly helped.
Is there an specialist on mouth problems that you could be referred to?
Like someone else, I did wonder about thrush.
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