Starting Tagrisso

[HeidiEg]

After four rounds of Keytruda, Pemetrexed, and Carboplatin a PET scan showed primary tumor had increased in size. My doctor then ordered a biopsy which tested positive for EGFR mutation. I had a three week course of radiation and just started Tagrisso two days ago. All my joints are sore. Hopefully, this side effect will ease.

[Denzie Moderator Volunteer]

Grateful to read that your doctor did check for biomarkers. From friends who have done both chemo and tagrisso I’ve hard they preferred the tagrisso.

There are ways that side effects can be managed and you should bring this to your doctor’s attention tomorrow.

Hopefully someone who has had the tagrisso will check in and be able to help. It’s a bit slow right now because of the holidays.

[HeidiEg in reply to Denzie]

Thank you Denzie.

[Bow-19]

Just wondered if you have joined the EGFR Facebook group too. Sometimes useful to meet people with the same mutation x

[HeidiEg in reply to Bow-19]

Thank you Bow. I noticed yesterday that some posters mentioned the Facebook group. I'll check it out.

[Bow-19 in reply to HeidiEg]

egfrcancer.org

[HeidiEg in reply to Bow-19]

Thank you Bow.

[CCSmokey in reply to HeidiEg]

I Took Tagrisso for 3 years and tolerated it well. unfortunately, I progressed on it after about a year and have been looking for an effective treatment ever since. CCSmokey

[Beeder]

I’ve been on Tagrisso for 2 years now for stage 4 EGFR, met to bone. The first couple of months i had terrible diarrhea, fatigue and skin issues. However, these have all leveled off. The tumors in my lungs and lymph nodes cleared after a year and I’ve only had one new tumor breakthrough that radiation took care of. Stick with it and i pray you have a good response too.

[HeidiEg in reply to Beeder]

Thank you Beeder. I am happy to hear that you are doing well. I have read a lot about targeted therapy resistance so it is very reassuring to hear from someone who is doing well for as long as you.

[urbangirl]

I have been on Tagrisso (Osimertinib) for 6 months and have had a few mild side effects. I was asymptomatic so do not know if this medication had any immediate impact, the scan, however, shows that it has. But I have read that some people who had symptoms reported improvements within the first week. My side effects come and go, including joint pain which I have had for some years anyway. As already advised there are several EGFR sites which give good advice/information/support. Good luck with the treatment.

[HeidiEg in reply to urbangirl]

Thank you urbangirl. I am happy to hear that your treatment is going well.

[Kaylee20]

I was on your first line of treatment also (Carbo, Alimta, Ketruda). I have been on Ketruda only for last 2 1/2 years. However, the bone pain in my knees was really bad. I am not overweight or had bone pain before cancer in July 2019. My doctor put me on 5 mg of Predisone (steriod) per day and it has helped so much. I have been on the Predisone for about 1 year now. I know being on steriods is not really good but it was a choice I made to have quality of life. It has been working for me.

[HeidiEg in reply to Kaylee20]

Thank you Kaylee. I am happy to hear that you are doing well on Keytruda alone. That was the original plan for me until I tested positive for EGFR. It's good that the prednisone has helped give you freedom from pain. Given what we are all dealing with, having some normalcy in our lives goes a long way.

[garden_girl]

Hello HeidiEg. I hope you are feeling better. I have stage 4 NSLC with EGFR mutation. When I first started Tagrisso at 80mg, I became very ill with diarrhea, nausea, sore joints and muscle with significant weight loss. My onc reduced my dose to 40mg when my symptoms didn't improve after 4 months. The good news is that I have only mild symptoms now and the tumors have shrunk. I am going on two years progression free.

[HeidiEg in reply to garden_girl]

Hi Garden Girl. I am happy to hear that your current dose is working for you and your side effects are under control. Two years is great. The joint pain I had after starting Tagrisso lasted only a week. Currently, I have some fatigue and mild skin issues. So, not too bad, I'm just a little apprehensive about my next scan coming up in a month.

[garden_girl in reply to HeidiEg]

Glad you are doing better. I have anxiety before my scans too. I try to do something nice for myself and keep busy. Keep the faith that the Tagrisso is working. Please let us know how your scan goes.

[betsybpr]

Hi HeidiEg. Your bio sounds very similar to mine except I don’t have any mutations - unfortunately. My Stage 4 NSCLC adenocarcinoma diagnosis came out of the blue in June. I’m 66 and lead a very healthy lifestyle. I’m married with 2 grown kids and a grandchild. I had successfully been on your first line of treatment for over 4 months. However, my last scans showed some progression and my oncologist is going to change my treatment after a needle biopsy next week. The emotional aspect and unknown outcomes has been very difficult for me too. If you ever want to connect and share experiences and resources please let me know.

[HeidiEg in reply to betsybpr]

Hi Betsy. If you feel up to speaking directly that would be fine.

[betsybpr in reply to HeidiEg]

Heidi, not sure how to get in touch on this private site. Let’s try figure it out.