Living with lung cancer - Introduce yourself & come say hi

Hi @mikee2all, Please follow up with your oncology department and/or AstraZenica. These drugs are so expensive, nearly all of us couldn't pay the out of pocket costs. I'm on a different targeted therapy, for a different mutation (ALK), and I know the manufacturer of that med has a few different assistance programs. Welcome, and let us know what you find out.

Thanks again for your info. I will follow what you say and let you know. AstraZenica is located very close to me. I am working with them but they have not mentioned any type of help.
I'll let you know..

Mikee,

I've seen skin rashes and dryness mentioned before, but I missed those. Hopefully, you'll miss the nail-splitting. I swear I split a nail early on while wearing gloves, and I still always wear gloves when doing any kind of work on our property.

My Oncologist has a social worker who specializes in working with drug companies to help people afford their medication. In my case, we have to prove our family spends over 10% of our net income on medical bills to qualify for a special AstraZeneca program. We've qualified for these last 3 years, and we receive the drug shipped directly to our house. Check with your Oncologist, as there may be a program you qualify for.

Let us know what the VA says, as I know there are other vets in a similar position.

Thanks so much for the info. Very helpful.
I have only been on Tagrisso for 35 days. I found my skin has dried out a lot and I have lost weight but that has seemed to stabilize.
My problem is, I am not on insurance and have to pay for Tagrisso myself and that's going to come to an end.
I am a Vet but not sure the VA will cover the expense. I have thought abut going to open a Go Fund Me page.

Mikee,

Sorry to hear you've joined the club. I'm guessing you mean "Tagrisso". If not, you can stop reading. 🙂

I'm 63-years-young and have been on Tagrisso for over 3 years. So far, the primary outcome has been that I've been lung cancer-free for 3 years. I have to add the qualifier because a whole-body dermatological scan found a basal cell carcinoma on my cheek that was removed last month.

The only long-term side effect I've experienced is brittle fingernails. 10mg of Biotin daily has helped. Initially, I had the usual diarrhea, plus low sugar and sodium levels. The sugar levels corrected themselves. I was taking up to 2 Imodium a day at one point, but that faded and disappeared after about 6 months. My sodium level was around the minimum normal since before I had cancer, but it got worse. Today I limit my fluid intake to no more than 50 to 60 oz (1.5 to 1.8 liters) of fluid per day, as recommended by my Nephrologist. As long as I do that, my levels are OK.

I had other symptoms that I suspect or know were not due to Tagrisso. My lung cancer metastasized to my brain, and I started Tagrisso a couple of months after having brain surgery.

Let me know if you have any more questions, and I'm wishing you the best!

Hello Mikee. (@franciekid; @flusshund )

Welcome to Mayo Clinic Connect. How long have you been on Tragrisso? Have you had an side effects as yet?

Merry

My name is Mikee, I am 77 and have been diagnosed with stage 4 lung cancer. I have been put on the medication Tragrisso. Has anyone been on this medication and what is the outcome?

Great idea!!

Hang in there it will get better. Stretching and yoga has helped me a lot. Also, Whenever you are in the shower or a hot tub do a few side stretches.

Fascinating. I understand it’s a relatively rare type of adenocarcinoma. I’m still dealing with rib and diaphragm pain since my surgery. Sadly, Gabapentin and I didn’t get along