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.
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.
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, 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.
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.
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.
@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/
I have been taking Tagrisso since mid November and feel good. The only side effect I have had was mouth ulcers shortly after starting the pill but they cleared up quickly and I’ve been fine since. I would recommend using Biotene mouth wash. It definitely helped when I had the mouth ulcers and with my dry mouth.
My scans in January showed the brain tumors had shrunk in half and the lung tumor had shrunk as well. I go later this month for new scans. Praying the scans show more shrinkage.
Since December my entire life has turned around. Praying. We were vacationing in Florida and spent a month in hospital and found out Stage IV lung cancer with EFGR. Now taking Tagrisso . I know I am blessed with immunotherapy just wondered what others can give me such as advice
@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/
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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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Helpful -
Hug
4 ReactionsThanks, 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.
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.
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Like -
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 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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Like -
Helpful -
Hug
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 am having chemo
first and then Tagrisso. Not too happy about that. I have Stage 2 EGFR.
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3 Reactionsyes 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 have been taking Tagrisso since mid November and feel good. The only side effect I have had was mouth ulcers shortly after starting the pill but they cleared up quickly and I’ve been fine since. I would recommend using Biotene mouth wash. It definitely helped when I had the mouth ulcers and with my dry mouth.
My scans in January showed the brain tumors had shrunk in half and the lung tumor had shrunk as well. I go later this month for new scans. Praying the scans show more shrinkage.
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Like -
Helpful -
Hug
2 Reactions@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/
In addition to the kind and helpful response you received from @flusshund already, you can click the link to see experiences of other members like @nursed2075 @gxvuong @1patrick @shaila1902 @lynnycooks and more.
Dik, how long have you been taking Tagrisso? How are you doing?