But not too much water. I've been on Tagrisso for 2 1/2 months. My body appears to still be adapting to this drug. Two weeks ago my sodium count went down to 125 (133 is normally the minimum end of normal.) My doctor ordered me to cut down to no more than one quart of water a day. I now add electrolytes to all the water I drink (Elete) and restrict to two quarts a day. An hour and a half from now I'll have my third weekly blood test.
I started Tagrisso last December after my lung cancer metastasized to my brain. My particular non-smoker's lung cancer is a non-small cell adenocarcinoma caused by a mutation in the Epidermal Growth Factor Receptor (EGFR) gene, specifically Exon 19. According to my research chemist friends, "Exon 19" identifies the particular protein that has mutated. How far we've come!
I feel that my body continually adapted to the presence of Tagrisso for a few months. The level of diarrhea varied a lot in the first 60 days. Now, half an Imodium a day is OK, and every now and then I skip a day. I had some dry skin issues for a while. I was joking that I took an Aveeno bath after I got out of the shower! But now a little Aveeno on my knees and ankles is sufficient. The huge problem was what it did to my blood sugar and sodium levels, again at around 60-80 days in. My blood sugar has historically been a rock-solid 95-102. One day I started with my typical breakfast of oatmeal and banana. Two hours later my blood sugar measured 65! My sodium level fell so low my Oncologist told me to drink no more than one quart, total, of fluid a day and scheduled a second blood test a week later. The fluid restriction has worked and everything has settled down by now. I re-read the original paperwork that came with Tagrisso and it says that males should not get anyone pregnant for four months after stopping the drug. After reading that, I'm not surprised that it seemed to take almost four months for my body to settle down in the presence of this new drug. Oh, and I'm also daily taking 1,500 mg Keppra (anti-seizure) and 2,2250 mg Robaxin (muscle relaxer) as well as 10 mg Xarelto (for life).
My WBC is still low, but my doctor doesn't care because the right components are normal. My doctors are taking no chances. I get a blood test every month. I get a PET scan, brain MRI and a MUGA test every three months.
As background: I was first diagnosed with lung cancer in June 2018. We caught it early because of my 2016 multiple blood clots and bilateral pulmonary embolism. Stage 2b. I had my upper right lobe removed via a DaVinci machine -- super minimal scars! The cut line tested positive, so 33 rounds of radiation. The cancer had also spread to a nearby lymph node, so four rounds of chemo.
July 2020 I started having "muscle spasm incidents", later re-termed "mini-seizures". A cranial CAT scan revealed the 3 cm cyst in my left parietal lobe. I had brain surgery on 9/30/2020. Still recovering from that. There are a few muscles on my right side that have forgotten how to play along!
Lastly, my doctor plans on keeping me on Tagrisso for six years. If he sees no more signs of cancer in that time, he will consider me "cured"! Only 5 1/2 to go!
I prefer to take Tagresso just before breakfast at 8.30 am everyday. Its important to take it at the same time and not miss a dose so I have a double alarm set up on my phone for it. I have Stage iv Lung cancer with mets in brain since Feb 2017.
Hi Colleen,
Yes, she is tolerating Tagrisso well. She takes Doxycycline 100mg daily and lactaid milk that works well for her.
She is doing well. We just returned from a vacation in Hawaii.
I just wonder if you know anyone who has brain mets and takes Tagrisso. Thank you!
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
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
I've been Stage IV since my nonsmokers lung cancer metastasized to my brain in Fall 2020. Also the EGFR mutation and Tagrisso. I'm tested (head MRI, CAT scan, MUGA scan) every three months and everything's still good. Working full-time, tending to the trees and gardens on our acre, walking the dog -- life is good.
Side note: Tagrisso is not immunotherapy. No risk of your immune system attacking internal organs as in standard immunotherapy. It actually targets and blocks the mutated gene, rendering it ineffective.
I AM dealing with a seemingly never-ending stream of physical issues including SI joint pain, chronic back pain, various other muscle issues, and side effects of being immune-suppressed. The latest theory is that I may have celiac disease. Upper GI this Thursday to find out. We know most of what I'm dealing with is a result of the brain surgery, not the Tagrisso, except being immune suppressed. After my second diagnosis, I purposely lost that extra 20 lbs I didn't need, regularly work out, and continue to see a wonderful Physical Therapy group, so everything continues to improve. My Neurologist feels that, with my current rate of progress, I'll have my old body back by the end of the year and once again hiking mountain trails.
My Oncologist is following a study of somebody who's had the same two occurrences of the same lung cancer history I've had: a small cyst in the upper right lobe, surgically removed, radiation, chemo, followed by metastasizing to the brain two years later, surgery, radiation. This person has been on Tagrisso for over 7 years now with no recurrence.
All in all, a few very dealable side effects, and life goes on. We're lucky that we got the type of lung cancer modern research has made significant progress with. Keep the faith!
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/
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.
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But not too much water. I've been on Tagrisso for 2 1/2 months. My body appears to still be adapting to this drug. Two weeks ago my sodium count went down to 125 (133 is normally the minimum end of normal.) My doctor ordered me to cut down to no more than one quart of water a day. I now add electrolytes to all the water I drink (Elete) and restrict to two quarts a day. An hour and a half from now I'll have my third weekly blood test.
I started Tagrisso last December after my lung cancer metastasized to my brain. My particular non-smoker's lung cancer is a non-small cell adenocarcinoma caused by a mutation in the Epidermal Growth Factor Receptor (EGFR) gene, specifically Exon 19. According to my research chemist friends, "Exon 19" identifies the particular protein that has mutated. How far we've come!
I feel that my body continually adapted to the presence of Tagrisso for a few months. The level of diarrhea varied a lot in the first 60 days. Now, half an Imodium a day is OK, and every now and then I skip a day. I had some dry skin issues for a while. I was joking that I took an Aveeno bath after I got out of the shower! But now a little Aveeno on my knees and ankles is sufficient. The huge problem was what it did to my blood sugar and sodium levels, again at around 60-80 days in. My blood sugar has historically been a rock-solid 95-102. One day I started with my typical breakfast of oatmeal and banana. Two hours later my blood sugar measured 65! My sodium level fell so low my Oncologist told me to drink no more than one quart, total, of fluid a day and scheduled a second blood test a week later. The fluid restriction has worked and everything has settled down by now. I re-read the original paperwork that came with Tagrisso and it says that males should not get anyone pregnant for four months after stopping the drug. After reading that, I'm not surprised that it seemed to take almost four months for my body to settle down in the presence of this new drug. Oh, and I'm also daily taking 1,500 mg Keppra (anti-seizure) and 2,2250 mg Robaxin (muscle relaxer) as well as 10 mg Xarelto (for life).
My WBC is still low, but my doctor doesn't care because the right components are normal. My doctors are taking no chances. I get a blood test every month. I get a PET scan, brain MRI and a MUGA test every three months.
As background: I was first diagnosed with lung cancer in June 2018. We caught it early because of my 2016 multiple blood clots and bilateral pulmonary embolism. Stage 2b. I had my upper right lobe removed via a DaVinci machine -- super minimal scars! The cut line tested positive, so 33 rounds of radiation. The cancer had also spread to a nearby lymph node, so four rounds of chemo.
July 2020 I started having "muscle spasm incidents", later re-termed "mini-seizures". A cranial CAT scan revealed the 3 cm cyst in my left parietal lobe. I had brain surgery on 9/30/2020. Still recovering from that. There are a few muscles on my right side that have forgotten how to play along!
Lastly, my doctor plans on keeping me on Tagrisso for six years. If he sees no more signs of cancer in that time, he will consider me "cured"! Only 5 1/2 to go!
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6 ReactionsHi Shaila,
how are you doing? Are you on Tagrisso now? My wife is on Tagrisso for 4 years and she has brain mets. Thank you!
@gxvuong, welcome. Is your wife tolerating Tagrisso well? How is she doing?
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1 ReactionHi Colleen,
Yes, she is tolerating Tagrisso well. She takes Doxycycline 100mg daily and lactaid milk that works well for her.
She is doing well. We just returned from a vacation in Hawaii.
I just wonder if you know anyone who has brain mets and takes Tagrisso. Thank you!
-
Like -
Helpful -
Hug
2 ReactionsHaving GI issues w Tagrisso. Tried to eat steak and vomited it up immediately. Why?
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
I've been Stage IV since my nonsmokers lung cancer metastasized to my brain in Fall 2020. Also the EGFR mutation and Tagrisso. I'm tested (head MRI, CAT scan, MUGA scan) every three months and everything's still good. Working full-time, tending to the trees and gardens on our acre, walking the dog -- life is good.
Side note: Tagrisso is not immunotherapy. No risk of your immune system attacking internal organs as in standard immunotherapy. It actually targets and blocks the mutated gene, rendering it ineffective.
I AM dealing with a seemingly never-ending stream of physical issues including SI joint pain, chronic back pain, various other muscle issues, and side effects of being immune-suppressed. The latest theory is that I may have celiac disease. Upper GI this Thursday to find out. We know most of what I'm dealing with is a result of the brain surgery, not the Tagrisso, except being immune suppressed. After my second diagnosis, I purposely lost that extra 20 lbs I didn't need, regularly work out, and continue to see a wonderful Physical Therapy group, so everything continues to improve. My Neurologist feels that, with my current rate of progress, I'll have my old body back by the end of the year and once again hiking mountain trails.
My Oncologist is following a study of somebody who's had the same two occurrences of the same lung cancer history I've had: a small cyst in the upper right lobe, surgically removed, radiation, chemo, followed by metastasizing to the brain two years later, surgery, radiation. This person has been on Tagrisso for over 7 years now with no recurrence.
All in all, a few very dealable side effects, and life goes on. We're lucky that we got the type of lung cancer modern research has made significant progress with. Keep the faith!
-
Like -
Helpful -
Hug
1 Reaction@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?
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.
-
Like -
Helpful -
Hug
2 Reactions