@lidycj51, that's quite a journey with cancer and a list of successful treatments. What a testimony that with 70 years, you're still working a physically demanding job.
You mention that you were on Imatinib back in 2012 for 3 years, but that you're dreading starting it again as a maintenance treatment. I get that. Did you have side effects on the drug back when you took it in 2012? When do you start it again?
I had A Gist removed from my lower small intestines back in 2012 was on Imatinib for 3 years. was fine and free until 2021 and got lung cancer, had upper right lobe removed no after treatment and was cancer free until now.
yearly scan showed another Gist showed up on my liver. I had 5 high does pinpoint radiation and they got it! I will probably be on Imatinib for the rest of my life which I dread! I just turned 70 a Masonry contractor and still working! I thank god every day for my life but I don't know if I can take much more of this.
@lidycj51, that's quite a journey with cancer and a list of successful treatments. What a testimony that with 70 years, you're still working a physically demanding job.
You mention that you were on Imatinib back in 2012 for 3 years, but that you're dreading starting it again as a maintenance treatment. I get that. Did you have side effects on the drug back when you took it in 2012? When do you start it again?
My husband has recently diagnosed w GIST and also bladder cancer, the 2 being not related cancers.
For GIST he is on avapritinib chemo
pills 300 mg daily. He is having a few side effects but the worst is sour mouth and throat. Any advice will be appreciated on how to handle this uncomfortable side effect. Thanks
Hi I'm sorry to here about your Huband's diagnoses, I'm on 400 MG of imatinib and my worst problem is hand and leg cramps that are so bad that they wake me from a deep sleep in agony!
I do have some dry mouth at night but keep fresh cold water to sip bed side. I'm told that the Imatinib is keeping the tumors from developing so i will continue taking it hoping my body will adjust.Hope this helps , good luck!
My husband has recently diagnosed w GIST and also bladder cancer, the 2 being not related cancers.
For GIST he is on avapritinib chemo
pills 300 mg daily. He is having a few side effects but the worst is sour mouth and throat. Any advice will be appreciated on how to handle this uncomfortable side effect. Thanks
Hello @poppycares and welcome to Mayo Connect. I'm glad that you found this forum where you can share your experiences with others.
As your husband also has bladder cancer, here is another discussion group that might be helpful to you,
--Bladder Cancer https://connect.mayoclinic.org/group/bladder-cancer/
While you wait for others to respond to your post about the side effects of chemo, I'm wondering if you have discussed this with his oncologist. Oncology offices often can suggest remedies that will help lessen the side effects and make them more manageable.
Here is some information from the WebMD website about the side effects of this medication. If you read the section about Common Side Effects, it lists bad unpleasant after taste as the first common side effect.
--Avapritinib side effects https://www.drugs.com/sfx/avapritinib-side-effects.html
Has your husband had any surgeries for cancer, or has chemo been the main treatment?
My husband has recently diagnosed w GIST and also bladder cancer, the 2 being not related cancers.
For GIST he is on avapritinib chemo
pills 300 mg daily. He is having a few side effects but the worst is sour mouth and throat. Any advice will be appreciated on how to handle this uncomfortable side effect. Thanks
I had A Gist removed from my lower small intestines back in 2012 was on Imatinib for 3 years. was fine and free until 2021 and got lung cancer, had upper right lobe removed no after treatment and was cancer free until now.
yearly scan showed another Gist showed up on my liver. I had 5 high does pinpoint radiation and they got it! I will probably be on Imatinib for the rest of my life which I dread! I just turned 70 a Masonry contractor and still working! I thank god every day for my life but I don't know if I can take much more of this.
My name is Jojo and I had a CT Scan in June of this year only because after radiation of my right breast in which occurred in 2022 I felt like a lump or knot around my right upper quadrant of my abdomen. Which is the top part of my abdomen has swollen and uncomfortable so the radiologist stated he saw a probable gastrointestinal stromal mass in my abdomen. I then looked it up and it states it’s a GIST. I never heard of this when I had an MRI last year with no mention of a GIST but only a legion on my liver called a hemangioma and my doctor stated he would keep an eye on it for me. Then come to find out I had a GIST all along but never knew about it til June of this year. I was surprised and saddened at the same time! Mine has been unchanged since last year which is a blessing thank you JESUS, but now I’m going for a EUS in August to biopsy it and full resection of the tumor if they are able to. I just fought right breast cancer in 12/31/2020 and I’ve never had problems with my liver or abdomen. My brother passed at age 52 of Metastasize Sarcoma in his right leg. If GIST are 2 cm or more they’re likely Sarcoma. I serve a Mighty God and I stand on his word and promises. Praying for everyone in these different groups!
Totally Agree,
I have called twice already, told the same thing, "waiting on results". I've reached out to friends in the medical professional and none have been able to help, our medical system is overwhelmed. Friday will be 2 weeks from the second biopsy. (a month from the first failed one). I'll get a call soon I'm sure. My father went through throat cancer a couple of years ago, I took him to each radiation treatment and the care was amazing. He's 81 and cancer free. I'm hopeful I will have the same outcome.
Cheers,
-TIm
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Welcome, @littleman. Have you been diagnosed with gastrointestinal stromal tumor (GIST)?
Hello, I am new here.
Yes I did but not as bad it also would mess with my stomach a bit.
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1 Reaction@lidycj51, that's quite a journey with cancer and a list of successful treatments. What a testimony that with 70 years, you're still working a physically demanding job.
You mention that you were on Imatinib back in 2012 for 3 years, but that you're dreading starting it again as a maintenance treatment. I get that. Did you have side effects on the drug back when you took it in 2012? When do you start it again?
Hi I'm sorry to here about your Huband's diagnoses, I'm on 400 MG of imatinib and my worst problem is hand and leg cramps that are so bad that they wake me from a deep sleep in agony!
I do have some dry mouth at night but keep fresh cold water to sip bed side. I'm told that the Imatinib is keeping the tumors from developing so i will continue taking it hoping my body will adjust.Hope this helps , good luck!
Hello @poppycares and welcome to Mayo Connect. I'm glad that you found this forum where you can share your experiences with others.
As your husband also has bladder cancer, here is another discussion group that might be helpful to you,
--Bladder Cancer
https://connect.mayoclinic.org/group/bladder-cancer/
While you wait for others to respond to your post about the side effects of chemo, I'm wondering if you have discussed this with his oncologist. Oncology offices often can suggest remedies that will help lessen the side effects and make them more manageable.
Here is some information from the WebMD website about the side effects of this medication. If you read the section about Common Side Effects, it lists bad unpleasant after taste as the first common side effect.
--Avapritinib side effects
https://www.drugs.com/sfx/avapritinib-side-effects.html
Has your husband had any surgeries for cancer, or has chemo been the main treatment?
-
Like -
Helpful -
Hug
1 ReactionMy husband has recently diagnosed w GIST and also bladder cancer, the 2 being not related cancers.
For GIST he is on avapritinib chemo
pills 300 mg daily. He is having a few side effects but the worst is sour mouth and throat. Any advice will be appreciated on how to handle this uncomfortable side effect. Thanks
I had A Gist removed from my lower small intestines back in 2012 was on Imatinib for 3 years. was fine and free until 2021 and got lung cancer, had upper right lobe removed no after treatment and was cancer free until now.
yearly scan showed another Gist showed up on my liver. I had 5 high does pinpoint radiation and they got it! I will probably be on Imatinib for the rest of my life which I dread! I just turned 70 a Masonry contractor and still working! I thank god every day for my life but I don't know if I can take much more of this.
@mzjosie24, has your diagnosis been confirmed? Do you have GIST?
Totally Agree,
I have called twice already, told the same thing, "waiting on results". I've reached out to friends in the medical professional and none have been able to help, our medical system is overwhelmed. Friday will be 2 weeks from the second biopsy. (a month from the first failed one). I'll get a call soon I'm sure. My father went through throat cancer a couple of years ago, I took him to each radiation treatment and the care was amazing. He's 81 and cancer free. I'm hopeful I will have the same outcome.
Cheers,
-TIm
-
Like -
Helpful -
Hug
1 Reaction