TAGRISSO. 40mg or 80mg

[Harold M]

I am Harold M, a 77yr young Caucasian man who one year ago was fit, healthy and mentally super sharp. 

Now I am the same person but take a daily 40mg TAGRISSO USD300 tablet to maintain my health. I am a Biotech entrepreneur so I understand the technology. 

A routine CT scan Xmas 2020 showed a lump on right lung size approx 4cm x 1.5cm and multiple minute dots in both lungs. 

 

A further scan showed no metastasis in brain or other organs. Further biopsy and full screening by Foundation Medicine Inc and other genetic tests showed an Adenocarcinoma... EGFR.... Non small cell. 

 

I was prescribed TAGRISSO 80mg and started treatment Mar 2021. Initially was great but over 3 months a number of side effects became worrying. The worst was a drop in platelets from circa 150 to as low as 66. The 2nd was  skin rashes on legs, torso and groin. There was also ankle swelling and acid reflux which is so horribly painful. 

The Oncologist and I experimented with stopping TAGRISSO for up to 2 weeks, and then alternate days, and then alternate weeks. Small improvements obtained. 

 

After a 4 month scan thro this varying doseage period the main tumour was 40% smaller. Amazing. 

In late August a London Professor recommended trying 40mg TAGRISSO daily. I have now taken it non stop every morning at 7am for 130 days and it's like being a New Man

I have zero side effects. The platelets this week were 101. A PET/CT scan in Aug and CT in Nov 2021 showed further shrinkage and I'm feeling great. 

The next scan in Feb/ March 2022 will show if shrinkage continues at this lower doseage of 40mg but I think and feel like it is working well.

 

My case history above might help some of you. We all react differently to drugs and food and in my case I feel 80mg was just too strong. I get woozy after 1 rum and coke or glass of Prosecco..... so I am very sensitive to things I swallow. 

 

I would say try 40mg..... same price, same active ingredient.... but delivers a softer punch, and see what happens in your own case. 

 

In my case I put weight back to my original 155 lbs, 5ft 11" and regained energy and zest for life 

I hope this message helps someone or many. Don't be afraid to experiment. Our treatments are not daily sensitive. They work over many months so there is lots of a scope to try something different week or month by month. 

 

Regards to you all. 

[Judy M2]

A reduction to 40 mg does help some people if side effects become intolerable. Personally, my side effects on 80 mg are manageable. Some people who develop leptomeningeal disease need to double their dosage to 160 mg. Everyone is different. Glad Tagrisso is working for you!

[Karen_L]

Harold, 

Congratulations on finding what works for you. This is such an individual journey. There’s not enough research yet to address all circumstances; it always helps to hear anecdotal reports. Tagrisso may be in my future. Time will tell.