Tagrisso and Hives

I had nearly the same experience several weeks ago. I took 1st tag (80mg) in the eve and next afternoon I had urticaria on legs, then arms and next day swollen hands. The on-call oncologist had me stop the tag. I slathered on hydrocortisone cream and had derm and allergy consults and the treatment plan was:
- 2 zyrtek bid (per allergist, but oncologist and I agreed on 2 in the eve only)
- pepsid bid
- Do the above for several days before restart Tag.
- Tag every 3 days until convinced no reactions, then every other day.

It's a guesssing game - only case reports and a mention from Astra-Zeneca that reduced dose of Tag is effective (and if it is, why start everyone on 80mg when there were so many drop outs from side effects in the famous/ifamous Aduara trial?) . I can't find any data on FDA website about effective dose. But there is a bit of info that half life is 48 hours (so again why 80mg every day when this drug is completely unaffordable without assistance?).

Are you doing OK now?

I'm taking Tagrisso now but can't afford it, are there any clinics that can help?

I paid for my first box of p[ills but not any more.

Medication & Financial Assistance Resources

Accessia Health800-366-7741
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Healthwell Foundation800-675-8416
National Organization for Rare Disorders800-999-6673
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Patient Access Network Foundation866-316-7263
The Assistance Fund855-845-3663

@justanotherpt, You've hit on a very important question that impacts all of us that are taking targeted therapies. The dose levels of these medications are primarily determined during phase 1 of the clinical trials. The US FDA's structure of the clinical trial cycle hasn't allowed for flexibility in dosing at later stages of that cycle. For drugs that are further along in the development cycle, going back to stage 1 to adjust the standard recommended dosing can be like starting over. Frankly, we don't have that kind of time. The research needs to stay ahead of any impending drug resistance. There is a program coming from the FDA that should help with balancing side-effects and overall effectiveness from the beginning of the process.
Here's a link to more info on the US FDA's Project Optimus: https://www.fda.gov/about-fda/oncology-center-excellence/project-optimus
"The goal of Project Optimus is to educate, innovate, and collaborate with companies, academia, professional societies, international regulatory authorities, and patients to move forward with a dose-finding and dose optimization paradigm across oncology that emphasizes selection of a dose or doses that maximizes not only the efficacy of a drug but the safety and tolerability as well."

I'm taking Tagrisso now but can't afford it, are there any clinics that can help?

I paid for my first box of p[ills but not any more.

@mikee2all, I've been taking 80mg of Tagrisso daily for 3 years. My Oncologist referred me to one of the cancer institute's social workers who was able to negotiate a deal with AstraZeneca. Each year, we or the social worker, have to demonstrate that my family spends 10% of our net income on medical expenses. Because we do, AstraZeneca ships Tagrisso to our house for no charge.

I'm only 63-years-young and still working full-time, so this is my best option. Your circumstances may be different. I know AstraZeneca also has other programs. I hope your Oncologist can help you find an appropriate one. Best of luck to you!

Thanks so much for your input. It gives me hope.
Who should I contact, AstraZenica?
My spending on Tagrisso alone is 45% of my yearly income. I am to see my Doctor this afternoon, I will run it by her.

Mikee2all,
The Azstra-Zeneca program is called AZ&Me Prescription Reimbursement Plan. Your oncologist (or the pharmacy staff where you are being treated) should be able to help or otherwise you can find the application info by going to the AZ&Me website.

@mikee2all, if your Oncologist or hospital has someone to help you navigate the system, I strongly recommend using them. When my wife and I tried doing it ourselves, it took a lot of hours, including more than one call to AstraZeneca. This past year, we contacted my doctor's social worker, sent her a few documents, and she called us back when it was done. She also told us there is more than one plan, probably depending on your insurance status.