Advanced Member
Posted 06 June 2013 - 09:53 PM
We have discussed these TKI drugs causing GERD, which happened to me as soon as I started Gleevec. With Nexium all these years, I have had no problem. I finally went for my Endoscopy, and it turned out I have Esophagitis, Gastritis, Hiatal Hernia, polyps out for biopsy. Has anyone had any severe stomach issues from their TKI? I started to get breakthrough heartburn, and then developed terrible stomach pains. Finally went for the EGD last week. Any advice would be appreciated.
Susan
Advanced Member
Posted 07 June 2013 - 07:56 PM
Hi Susan, I am very sorry to hear that you aren't well at the moment. I am much earlier into this journey than you of course - but I too get heartburn and reflux from Gleevec. I took zantac for about a year, but I was concerned that it may have been interfering with my Gleevec absorption, and also my absorption of iron. I weaned myself off it, which is extremely difficult as you get rebound acid from a reduction in dose or going cold turkey, but I found that when I was completely off it, the only thing that helps is to control my diet - it's a bit annoying, but it can be very effective in controlling acid if you do it for long enough at first, you can have treats and it's not so bad, as long as you stick to the diet the majority of the time. I have coffee a few times a week, plus I do eat chocolate and fatty foods sometimes, but it's ok, as long as it isn't all the time. If I eat a lot of junk in one day though, I do pay for it! My husband was on Nexium for about 6 years as he had a heller myotomy for his achalasia, and he suffered quite a lot from acid pain as he has no protection in his oesophagus from his stomach acid - he recently weaned off the nexium over a period of about 3 months, and sticks to the low acid diet most of the time, and he has experienced a very large improvement in his acid pain. The key is the diet unfortunately, especially avoiding fatty food, alcohol, and sugar, sometimes fruit juice, they are the worst for me - and it takes a while to take effect, but once you have it controlled through diet and you can let everything heal, you will feel better. Let us know what the doctors say though. All the best, Pin xx.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Advanced Member
Posted 07 June 2013 - 08:50 PM
Thanks Pin: I know the diet is important to keep the acid out of the esophagus. I also know you have to eat small meals and eat slow to avoid pain in the Hernia. Its a lot to handle along with everything else that goes along with health issues. Sorry your husband has a problem with the Esophagus. It is so important to not let any deterioration of the Esophagus occur, as it can cause some life threatening issues later on. I hope he continues to do well.
My biggest thing is giving up coffee. I have cut down, but have not been able to cut it down enough.
Also the Nexium has never interfered with my Gleevec. This is the first time I am having trouble.
Take Care
Susan
Advanced Member
Posted 08 June 2013 - 07:23 AM
Susan,
I'm so glad you went for your scope! Perhaps this is a good time to discuss reduction in dosage with your doctor, again. It might even be that a reduction to only 300 mg would be helpful.
I was on Prilosec for 10 years before I had to go cold turkey after the Gleevec induced hepatitis and knowing I would be switching to Sprycel. Amazingly, I didn't have the rebound reflux like so many others. I do have occasional problems but when I stick to a low carb, meaning no whites (potatoes, flour, rice, sugar) I do much better. I don't pay any attention to the fats I eat and my blood lipids are great. For fruit, I generally stick to berries, those were always my favorites even before I had even heard of low carb. One of the known benefits of a low carb diet is reduced stomach acid production. If you're interested in more info, let me know.
Hoping the polyp biopsies are normal!
Thinking of you,
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Advanced Member
Posted 08 June 2013 - 07:45 PM
Thanks Pat: I actually was thinking of having a talk with my Oncologist again. If she will not cut my dose, then I was going to ask her for 100mg tablets, and spread it out with 200 in the morning, and 200 after dinner.
I have so many diets. My niece is a nutritionist. She printed up a perfect diet for me, but like I have said I have trouble sticking to anything, and thats why I have a weight issue. I have been doing better now with all this trouble. The list I got from the doctor of what I can eat, was carbs. I was told no coffee, spices, spaghetti sauce, anything that would irritate my stomach and esophagus. You never know what to do.
I would appreciate any more information you could give me. You can send me a personal message anytime.
I do not get my biopsy results till June 24, and now my husband is having some health issues. I am trying to take care of him first. It just never ends. Thanks for your Support.
Susan
Advanced Member
Posted 09 June 2013 - 06:37 PM
Susan you seem to get your bigger sha of lumps then many. I'm sorry you are going through this now. I hope you feel better soon and get some good results.
If you are not already doing it you may want take a probiotic supplement to help your stomach. My wife has bad GI issues (hiatal hernia etc) when she sticks to her probiotics daily she feels a lot better.
Maybe ask your doctor.
Advanced Member
Posted 09 June 2013 - 08:51 PM
Thanks Lucky: I am dealing with my stuff, and now Gary just went for his 6 month check on his Prostate to be sure he is still in remission. I kind of put my stuff on the back burner, because he always has to give a urine sample. They found a lot of blood in his urine, so after sending him for a Renal Ultrasound they found a 11MM kidney stone, and possibly more. So now his prostate if great, but he might have to get Litrotripsy. The stone is not giving him any discomfort because its too big to move anywhere. Thanks for your advice on my GI issues.
We all have our share, if its not one thing its another, but we get through it. Glad your wife is feeling better too.
Susan
Advanced Member
Posted 09 June 2013 - 09:21 PM
Hey, Susan. . .Sorry that I don't have any advice to offer. Just good wishes and sorry to hear that you are going through stuff. I've been out of touch for awhile.
All the best,
Marnie
Advanced Member
Posted 09 June 2013 - 09:24 PM
Thanks Marnie: I have been so busy and sick, and have not gotten on here as often as I used to. Hope all is going well with you too. I noticed we have not heard from Billie for awhile either. I better check on her too. I know her husband was not feeling good with his problems too.
Susan
Member
Posted 10 June 2013 - 11:07 AM
Hi Susan,
I've got pretty bad reflux issues too. I take a zantac before dinner and then 4 tums at bedtime and sometimes that isn't even enough. I don't have any advice. I'm like you - I know I should control it with diet, but it's not easy. Hope you get some relief soon.
Rissa
Advanced Member
Posted 11 June 2013 - 06:18 AM
Hi, Susan,
I know what you mean, everything I've read says to eat lots of carbs and those are the things that make me feel the worst! Weight Watchers back in the beginning was very low carb (and fairly low fat), I did great with it - lost 33 lbs. in 6 months. When they changed to high carb I wanted to eat everything in site, for me it was awful! You're right, we all have to find what works for us.
Hope you find what works for you!
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Advanced Member
Posted 11 June 2013 - 06:14 PM
Hi Rissa: Thanks for your support. I cannot even take Tums. I cannot take any of these things with Calcium, as I have a problem where it increases my Calcium level in my blood work to extremely high numbers.. I can eat foods with Calcium, but no supplements. I am just using my Nexium, and the doctor has me on Carafate before meals and again at bedtime.
I guess we need to work on the diet more.
Susan
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