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I'm new here. Especially interested in tagrisso


S.R.C.

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My son was diagnosed with Adenocarcinoma Egfr mutation stage 4 on 7/8/18. He has had radiation for his brain and spine. He started taking Tagrisso on 7/31/18.

He will turn 28 next month. He has a wonderful wife, 8 year old daughter and a 6 month old baby boy.

He has lost a lot of weight. He was thin to start with. He is now only 110 lbs. Up until now he has always been very healthy. It scares me. We were told the drug wouldn't bring improvement for at least 4 weeks. It will be 2 weeks on Tuesday.

I would be interested in hearing of any experiences with this drug. Any ideas or info that might be helpful.

The cancer seems to be everywhere. It all happened so fast.

I know God is in control. He is with us on this journey. He will see us through. 

38For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, 39nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. Rom.8:38 & 39

Thank you in advance for any experience, hope, encouragement and knowledge you may have to share. I realise it has been gained at a cost.

SRC

 

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Hi, SRC, 

I don't have any experience personally with Tagrisso, but I wanted to welcome you here.  I'm not sure who on the forums might have experience with Tagrisso, specifically, but we have quite a few long-term survivors who have had advanced-stage NSCLC.  This is a great place for information and support.

Glad you found us!

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Hi SRC and welcome. I don't have any experience of Tagrisso either. I hope some that do will respond to you. This is a good place to find support and hope. I wish the best to you and your son and his family.

Bridget O

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SRC,

I was diagnosed with late stage lung cancer almost 15 years ago and well before the EGFR inhibitor Tagrisso was discovered (here is information about the drug and the new targeted therapies recently approved by the FDA).  Once I was projected to live less than 6 months, but my faith sustained me and a newly emerged treatment resolved my lung cancer.  Mine was an arduous journey. You son's may be also because lung cancer is unusually persistent.  Recurrences after successful treatments are common.  

Faith and hope are vastly important in my life.  My faith sustains me and allows the benefits of hope to work in my life.  Here is a short essay on my views of hope and faith. Your most important takeaway from my experience in treatment is if I can live, so can your son.

Tagrisso is a remarkable drug that is very very successful for some lung cancer patients that display the EGFR genetic marker.  I hope your son is among those it works for.  If not, the Lord will provide other remedies. 

Stay the course.

Tom

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So happy for you. 15 years is huge. Thank you for sharing

It's difficult waiting for the drug to hopefully work for him while he is so sick .I know this isn't the only option for him. We are hoping and praying it yields some good results.

It does help to hear of positive outcomes

SRC

 

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The Tagrisso seems to be working. My son felt well enough to attend church today and even stayed for potluck. He couldn't have done that when I was there a month ago. He has managed to gain a little weight. He will have been taking it for 3 weeks this coming Tuesday. I am so looking forward to celebrating his birthday with him next month when he will have been taking Tagrisso for 6 weeks.

I am grateful to God. Prayers are being answered.

I am also thankful to all who have worked hard to develop new drugs and all who have tested them out.

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SRC

I also cannot give from experience with Tagrisso. There are so many new treatments, immunotherapy, chemotherapy, targeted therapy, radiation and many more. Hope your son continues to respond to Tagrisso and gain weight. Stay positive and know there are many in this forum who are praying and thinking of your family daily. Never give up, whatever it takes. 🤞 Each of us are fighting this battle and praying that our wonderful doctors find us the very best plan of attack.

Sending you strength through prayer that you stay strong on this roller coaster journey, we are on it with you.

Ddot

 

 

 

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Thanks for the update, S.R.C.! Please continue to post updates and let us know how you and your son are doing. We're here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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SRC

Great report on your son's condition.  We love good news here; we don't get it often.  Here is hoping the next report from you is your son shows no evidence of disease or NED.  That is our end game.

Stay the course.

Tom

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  • 1 month later...

I have been on Tagrisso for 56 days.  Stage 4 1st diagnosed as Stage 3 in January 2018. Had chemo, radiation then immunotherapy.   Once the biomarker test was done and it was determined I was EGFR I was put on Tagrisso.   So far the results have been great!  Main side effect I have been dealing with is the leg muscle pain.  I will have my fist CT since Tagrisso started this week and expect confirmation that it is working.

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  • 4 weeks later...

Thanks Eagle 13.

I hope your c.t. scan results were very good. I appreciate you sharing your experience.

A.couple of weeks ago my son got results from an m.r.i. that showed that some tumors in his brain were gone and others were smaller.  They were treated by radiation,, followed by tagrisso. It is working very well for him. I have a lot to be thankful for this Thanksgiving.

He lives about 300 miles away. I hope to see him sometime before Christmas.

I hope and pray for continued successful treatment for you.

S. R. C.

 

 

 

 

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Hi SRC,

Thank you for the prayers!   My CT did have good results showing the Tagrisso had essentially stopped the cancer growth and reversed the plerual effusion I had from the previous CT.   That said I learned I had a Pulmonary Embolism.  The PE was likely caused from one of the side effects of fluid in the legs.   Luckily the PE was caught on the CT before there was a serious impact.  I am now being treated for the PE.  I also learned that cancer patients are 70% more likely to get a PE than others.   I am very encouraged by the Tagrisso.  It definitely appears to be stopping my cancer so far.  I am learning to manage the side effects of the fluid in the legs and ankles and the muscle pain in the calves of both legs.

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  • 2 years later...

It is unfortunately illegal in the US for patients to give leftover Tagrisso to anyone else. Perhaps contact the manufacturer Astra Zeneca? They have a financial support program here in the US. I'm very sorry to hear of your mom's progression. 

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