I’m not gonna lie. Mucositis might be the most unpleasant side effect I have dealt with yet. Currently I have an ulcer on the side of my tongue, on both inner cheeks, and covering the back of my throat and trailing down my esophagus. Excess mucous that causes me to gag and choke is part of this not so pretty picture.
Sucks and certainly has a negative impact on quality of life. However, and this is a big however, my breathing has improved. Markedly.
I can’t live if I can’t breathe. These side effects blow but there aren’t going to kill me.
So there you go. The things we do to stay alive. And I have already noted that I am willing to do just about anything to stay at this party.
Even the stuff that’s hard to swallow. Pun intended.
Thinking of you!
You continuously amaze and impress me Linnea. The things you have put up with to, “stay at this party” are just incredible. You are incredible✊🏼❤️
Is there any salve or med they can give you to alleviate the sores/excess mucous, Linnea? Maybe vodka lozenges? ❤️
Never said it to anyone before but I don’t think it will me my cancer that kills me, it will be ONE of the side effects. Hope you feel better soon.
First and foremost…. you are breathing better!!!!!
I’m so thrilled for that! I’m so bummed you are in pain
In your mouth and other areas. Sucks. I have often wondered why a temporary feeding tube could not be used to insure great nutrition, calories and less pain while eating? You matter!!!
Linnea, I have mouth issues, too, on my last-resort off-label ROS1 drug which has many very bad side effects. Anything with mint is painful, which means almost everything made for oral care. Luckily I found Oranurse unflavored fluoride toothpaste (have to order from Amazon UK since not sold in USA. Otherwise I’d have had to resort to childrens toothpaste (Tom’s Silly Strawberry, etc) although I don’t like the idea of fruit juice residue on my teeth from it.
Like you, I’m glad to be breathing well again despite the many bad side effects.
Seriously! Your strong reasons for living are pulling you through this. My heart is with you!
This stuff works wonders. Peter swore by it and I use it anytime I have cancker sore. If you send me your address, Amazon will have it there in less than 24 hours. I would do anything for you!!
Hi I follow your blog because my brother who lives in Massachusetts is living with stage 4 lung cancer at 54 years old. You are an inspiration to me and your strength gives me hope for my brother. He eats several hot peppers every day because of the capsaicin in it supposedly helps with mouth sores.
Thanks for your blog and fight. Kim
Hi I love you keeping up on your story. I also am here for the party. Good and bad. So glad your breathing is better.
You are one of the bravest and most inspiring women I’ve read about to date in my life. Your unwavering determination in this fight and optimism for life gives me hope and lifts me up. I look forward to reading your updates and wish for nothing but the best for you. Thank you!