@dik27, that must've been such a shock to go from vacationing to a cancer diagnosis. Thank goodness that immunotherapy is a treatment option for you. I moved your question about Tagrisso to this existing discussion:
- Has anyone taken the targeted therapy osimertinib (Tagrisso)? https://connect.mayoclinic.org/discussion/chemo-tab/
Its worked so far for me. No new mets and lung tumours under control. All the trials show good results. And what a blessing that we have a targeted therapy and do not have to get chemo.
Hi, Shaila1902 - are you still taking Tagrisso? My mom was just diagnosed with metastatic lung cancer with brain lesions and is about to start this drug. Curious how it's going for you.
I have been on Tagrisso since October of 2022. Minor side effects such as fingernails are brittle, break or splinter. I recommend liquid bandage from Walgreens; works very well. The second is diarrhea which is easily taken care of with IMODIUM once a day or every other day.
Hi, Shaila1902 - are you still taking Tagrisso? My mom was just diagnosed with metastatic lung cancer with brain lesions and is about to start this drug. Curious how it's going for you.
Hi @gavinmyers13, Have you seen this recent discussion from other EGFR patients too? https://connect.mayoclinic.org/discussion/newly-diagnosed-lung-cancer-egfr-mutation-stage4/?pg=2
Most of the Tyrosine kinase inhibitors (TKIs) are tolerated fairly well. The doctors will likely want to monitor liver and kidneys early on, and there are commonly GI related side effects. These meds have been life saving for many of us. I take a different TKI specific to ALK Positive lung cancer, also metastatic (diagnosed in 2020). I’m hopeful that the treatment will be effective for your mother too.
How is she feeling? Is she experiencing symptoms?
I have been on Tagrisso since October of 2022. Minor side effects such as fingernails are brittle, break or splinter. I recommend liquid bandage from Walgreens; works very well. The second is diarrhea which is easily taken care of with IMODIUM once a day or every other day.
I've been on Tagrisso since January 2021. No cancer recurrence and my ejection fraction has increased as I've lost weight and walk farther every day. Yes, my nails split, but I take 5 mg of Biotin daily and rub Vitamin E oil into my nails which has helped a lot. I can't comment on GI issues, because I have others that are likely contributing. Still working on figuring all that out.
Hi @gavinmyers13, Have you seen this recent discussion from other EGFR patients too? https://connect.mayoclinic.org/discussion/newly-diagnosed-lung-cancer-egfr-mutation-stage4/?pg=2
Most of the Tyrosine kinase inhibitors (TKIs) are tolerated fairly well. The doctors will likely want to monitor liver and kidneys early on, and there are commonly GI related side effects. These meds have been life saving for many of us. I take a different TKI specific to ALK Positive lung cancer, also metastatic (diagnosed in 2020). I’m hopeful that the treatment will be effective for your mother too.
How is she feeling? Is she experiencing symptoms?
Thanks, Lisa! I'll check that discussion out. I'm thinking we need to know specifics on my mom's mutation as we haven't been told exactly what her's is. He has shared that it is likely her cancer develops a resistance to this Tagrisso, is that common for all mutations or more likely just for my mom's, do you know?
Thankfully she is physically doing quite well. We discovered her cancer from her suddenly sensing numbness in her lower body and a mysterious bladder issue. After a couple of months of her doctor and some specialists scratching their heads a neurologist at Mayo discovered a lesion in her sacrum that is pressing on the nerves controlling her bladder and lower body, then found the primary in her left lung. She had immediate radiation for 5 days on the sacrul lesion and is starting this TKI Tagrisso tomorrow to tackle the left lung lesion and the mets in her brain. Emotionally, it's a rollercoaster but we're taking things one day at a time.
Thanks, Lisa! I'll check that discussion out. I'm thinking we need to know specifics on my mom's mutation as we haven't been told exactly what her's is. He has shared that it is likely her cancer develops a resistance to this Tagrisso, is that common for all mutations or more likely just for my mom's, do you know?
Thankfully she is physically doing quite well. We discovered her cancer from her suddenly sensing numbness in her lower body and a mysterious bladder issue. After a couple of months of her doctor and some specialists scratching their heads a neurologist at Mayo discovered a lesion in her sacrum that is pressing on the nerves controlling her bladder and lower body, then found the primary in her left lung. She had immediate radiation for 5 days on the sacrul lesion and is starting this TKI Tagrisso tomorrow to tackle the left lung lesion and the mets in her brain. Emotionally, it's a rollercoaster but we're taking things one day at a time.
Her oncologist will have more specifics, but generally Tagrisso is prescribed for patients with an EGFR mutation. So far, the various targetable cancers will find a way to mutate around the TKIs, and become resistant. That isn't specific to EGFR or Tagrisso. Those cancer cells are just too smart. There are very smart scientists working their magic in continuing research aimed at delaying or stopping this resistance from happening, and there are always new medications in development too. There is no way to predict who can have long success on the meds. We all need to be thankful for the extra time, and hopefully good quality of life during that time.
I'm glad to hear that she's doing well physically. Dealing with the weight of the diagnosis is very difficult, especially in the beginning. I'm sure it's not easy to watch her go through this, but she's very fortunate to have you at her side.
I’ve been on Tagrisso for a little over three years. I was unable to tolerate 80 mg; but after my dosage was adjusted to 40 mg, I have done very well. I have pelvic/chest/abdominal CT, brain MRI, and bloodwork every three months. For the past three years, my report is “stable”, which is a great word for us cancer survivors. We thank God for Tagrisso and our outstanding doctors.
My wife was diagnosed Sept 2022 with EGFR with exon 19 mutation and has been on tagrisso 80 mg since Sept 2022. Besides splitting nails, dry skin and occasional diarrhea, she is doing ok. The cancer has been reduced in size in her brain and lungs (including tumours) and gone from her lymph’s, liver, femur and lower back spine. She has checkups (blood work, and scans) every quarter. She also experienced blood clots in December after being on Tagrisso for 3 months so now doing daily injections of blood thinning medication. She is taking collagen powder which really helped against dry skin.
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yes big shock and it seems like it takes time to accept this outcome just started Tagrisso. tired and nauseous
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1 ReactionI am having chemo
first and then Tagrisso. Not too happy about that. I have Stage 2 EGFR.
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1 ReactionHi, Shaila1902 - are you still taking Tagrisso? My mom was just diagnosed with metastatic lung cancer with brain lesions and is about to start this drug. Curious how it's going for you.
I have been on Tagrisso since October of 2022. Minor side effects such as fingernails are brittle, break or splinter. I recommend liquid bandage from Walgreens; works very well. The second is diarrhea which is easily taken care of with IMODIUM once a day or every other day.
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Helpful -
Hug
1 ReactionHi @gavinmyers13, Have you seen this recent discussion from other EGFR patients too? https://connect.mayoclinic.org/discussion/newly-diagnosed-lung-cancer-egfr-mutation-stage4/?pg=2
Most of the Tyrosine kinase inhibitors (TKIs) are tolerated fairly well. The doctors will likely want to monitor liver and kidneys early on, and there are commonly GI related side effects. These meds have been life saving for many of us. I take a different TKI specific to ALK Positive lung cancer, also metastatic (diagnosed in 2020). I’m hopeful that the treatment will be effective for your mother too.
How is she feeling? Is she experiencing symptoms?
I've been on Tagrisso since January 2021. No cancer recurrence and my ejection fraction has increased as I've lost weight and walk farther every day. Yes, my nails split, but I take 5 mg of Biotin daily and rub Vitamin E oil into my nails which has helped a lot. I can't comment on GI issues, because I have others that are likely contributing. Still working on figuring all that out.
Thanks, Lisa! I'll check that discussion out. I'm thinking we need to know specifics on my mom's mutation as we haven't been told exactly what her's is. He has shared that it is likely her cancer develops a resistance to this Tagrisso, is that common for all mutations or more likely just for my mom's, do you know?
Thankfully she is physically doing quite well. We discovered her cancer from her suddenly sensing numbness in her lower body and a mysterious bladder issue. After a couple of months of her doctor and some specialists scratching their heads a neurologist at Mayo discovered a lesion in her sacrum that is pressing on the nerves controlling her bladder and lower body, then found the primary in her left lung. She had immediate radiation for 5 days on the sacrul lesion and is starting this TKI Tagrisso tomorrow to tackle the left lung lesion and the mets in her brain. Emotionally, it's a rollercoaster but we're taking things one day at a time.
Her oncologist will have more specifics, but generally Tagrisso is prescribed for patients with an EGFR mutation. So far, the various targetable cancers will find a way to mutate around the TKIs, and become resistant. That isn't specific to EGFR or Tagrisso. Those cancer cells are just too smart. There are very smart scientists working their magic in continuing research aimed at delaying or stopping this resistance from happening, and there are always new medications in development too. There is no way to predict who can have long success on the meds. We all need to be thankful for the extra time, and hopefully good quality of life during that time.
I'm glad to hear that she's doing well physically. Dealing with the weight of the diagnosis is very difficult, especially in the beginning. I'm sure it's not easy to watch her go through this, but she's very fortunate to have you at her side.
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3 ReactionsI’ve been on Tagrisso for a little over three years. I was unable to tolerate 80 mg; but after my dosage was adjusted to 40 mg, I have done very well. I have pelvic/chest/abdominal CT, brain MRI, and bloodwork every three months. For the past three years, my report is “stable”, which is a great word for us cancer survivors. We thank God for Tagrisso and our outstanding doctors.
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Helpful -
Hug
5 ReactionsMy wife was diagnosed Sept 2022 with EGFR with exon 19 mutation and has been on tagrisso 80 mg since Sept 2022. Besides splitting nails, dry skin and occasional diarrhea, she is doing ok. The cancer has been reduced in size in her brain and lungs (including tumours) and gone from her lymph’s, liver, femur and lower back spine. She has checkups (blood work, and scans) every quarter. She also experienced blood clots in December after being on Tagrisso for 3 months so now doing daily injections of blood thinning medication. She is taking collagen powder which really helped against dry skin.
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Helpful -
Hug
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