Stopping Tagrisso

[Goldmoon]

Hi,

I was diagnosed in May 2021 with lung cancer, adenocarcinoma, EFGR, I was very breathless, couldn’t eat and fatigued at the beginning. When I had results of lung biopsy, I was told I was suitable to be treated with Tagrisso, a target treatment, daily tablet, this was July 2021. I had few side effects, horrible skin problems within 10 days of starting treatment but within a few months I gradually felt well again. There was a good improvement in my scans at first now they have been stable for many months and I feel blessed to feel well, and have no symptoms of lung cancer. My symptoms are nail problems and thinning hair from Tagrisso. I asked my Consultant what future plan is he said keep taking tablets. I asked him at my last consultation if I come off tablets would cancer come back, he said it can come back with or without tablets. I really feel I would like to either come off tablets or have a reduced dose, and see how I fare, I fear long term effects of medication and think they may make me I’ll, whereas I feel so well now. Would appreciate anyones opinion. I see my consultant at the end of January. Sorry for long post.

[Justbreathe55]

I started on them yesterday and I'm too concerned about side effects. I suffer with gastric and stomach issues already so it does concern me that taking these for 3 years will cause irreversible damage. I asked about going on 40mg as the treatment is only adjuvant as my cancer was removed through surgery, but the oncologist said they want me to start on 80 and see how I go. It's a hard one because if we stop them or lower the dose and it does come back will we regret it? The egfr support group is a good place for advice I can send you the link if you like.

[Goldmoon in reply to Justbreathe55]

Morning Kazzacrazy, thank you for your reply, to reassure you I have found Tagrisso to be a wonder drug and obviously it is the unknown when we start a new drug. The rash I got wasn’t nice but was dealt with immediately by hospital I had to stop tablet and was given tablets and cream, it took 3 to 4 weeks to go. Then I restarted on 40mg (was very apprehensive) I was fine on these then between my consultant and me (I was uneasy going back on 80mg) he put me on 40mg one day, 80mg next day) which has been fine apart from hair, nails and slightly redness on skin. I think they like to start us on 80mg for our benefit but if you have problems sure they will adjust and advise. Good luck you will be well monitored. My plan is to have a good chat with my consultant. Take care.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Goldmoon,

With all treatments there will always be the potential that you may experience some side effects. I would advise that you speak to your oncology team the pros and cons of stopping or reducing the dose of treatment, they have access to your notes and medical history and they will in the best position to advise.

If you want to get in touch with others who have EGFR positive lung cancer and there is a dedicated website run by patients on this mutation: egfrpositive.org.uk/

This website provides all the information for those with this specific mutation, including treatment options and latest news about EGFR positive lung cancer.

They also have their own Facebook support page: facebook.com/groups/2805110...

You may find interesting the EGFR Good practice guide on treatment options: egfrpositive.org.uk/egfr-go...

If you would like to discuss anything, our ask the nurse helpline is open Monday to Thursday 0900-1700 and Friday 0900-1600 on 0800 358 7200 alternatively you can email us at [e-mail]

Kind regards

The Roy Castle Support Team

[Goldmoon in reply to RoyCastleHelpline]

Thank you for your response, I will have a good chat with my consultant at the end of the month about pros and cons. very much appreciate this helpline, your support team and everyone who posts and replies many thanks, peoples experiences can be helpful and relatable on this journey we have been given.

[mikee2all]

Good article, I have the same thing. My problem is I have no insurance and coming to the end of my box that I paid for to start Tagrisso. I am still losing weight a little at a time, no mater what I eat. I have an appointment with my doctor today, I'll keep in touch.👍

[Goldmoon in reply to mikee2all]

Hi Mikee2all,

Hope your appointment went well, I too lost a lot of weight at first but I can enjoy my food again now and am acceptable weight now. Hope your body accepts Tagrisso and it helps you, good wishes.

,

[mikee2all in reply to Goldmoon]

Thanks for your reply. Yes, it went well. My biggest concern of obtaining Tagrisso. Here in Costa Rica we have Socialized medicine. It' very similar to medicare. Sometimes it's good and sometimes not so good. I was afraid that they Dr, at the hospital would turn down my request for Tagrisso. My doctor said that she would talk to the social doctor and demand it. By the way, the 2 are very good friends, that makes me feel good.

Tag (as it's called for short) has made my skin very dry and crusty. I don't mind as long as it's doing its job. I have an appointment with the social doctor on Jan 23rd and we'll know then. My backup is to go to the VA hospital in Miami.

Tag or the cancer has affected my swallowing. It seems that more air is involved when I swallow. It doesn't hurt or anything like that, just that I notice it.

I still cough but that has really lessened since taking Tag. I used to cough all day, now I just have a coughing spell every so often.

My weight has stabilized, I gain a fraction of a kilo or lose a fraction.

Be good and have a nice weekend.

[Bow-19]

As said before it’s worth joining the EGFR UK facebook group and also maybe the worldwide one EGFResisters. Lots of people on those pages who have the same mutation and similar reactions. I have a different mutation ALK and am in their Facebook groups. If I was you, I would get a second opinion from an Oncologist who specialises in EGFR before deciding to come off the treatment. You will probably be able to get some tips from both of the EGFR groups re how to manage your nail and hair problems. Wishing you all the best x

[Goldmoon]

Thank youBow-19 for good advice, I never thought of a second opinion my daughter thinks that is a really good idea but I have reservations because I have such a good rapport with my consultant, I may word it would he like to consult with colleague and get back to me, send you very good wishes x