HER2 Support Group Forums - View Single Post - Stomach Sounds-yikes :tykerb-herceptin combo

hutchibk · 03-06-2010, 03:24 PM

OK, let's see if I can help...

I have been on Tykerb/Herceptin for a year and a half. I take 4 pills (1250mg of Tykerb) every night. When I first started this regimen, I took 5 pills, but it caused bad digestive distress and gurgling/bloating that was horrible, so we dropped to 4 and all was immediately much much better.

I learned a fantastic solution from my doc for the "poo-terookis"... instead of taking Immodium pills after the fact to try and control what has already happened, I keep the Immodium liquid on hand. For a couple of months, I drank 1/2 to full capful every morning. It controls the tummy and sets the tone for the rest of the day, every day... and I had no more "uh-oh everyone get out of my way" moments. It is very controlling and soothing. The last couple of months have been very normal and I haven't needed the Immodium... but I have been taking Jarrow EPS Acidophilous everyday, and I think that really does the trick now.

All that said, I have to eat a very clean diet to keep things stable. Fried and processed and spicy and junky foods set my stomach in a downward spiral. Clean and fresh and mild and home-prepared/home-cooked foods are what my stomach loves.

Also, I read the Tykerb packaging again recently and as with many meds, you are supposed to stay away from all things grapefruit and get this... on Tykerb they tell you NOT to eat potato skins. So I don't, even though I used to love them.

Hope this helps...

03-06-2010, 03:24 PM	#6
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Re: Stomach Sounds-yikes :tykerb-herceptin combo OK, let's see if I can help... I have been on Tykerb/Herceptin for a year and a half. I take 4 pills (1250mg of Tykerb) every night. When I first started this regimen, I took 5 pills, but it caused bad digestive distress and gurgling/bloating that was horrible, so we dropped to 4 and all was immediately much much better. I learned a fantastic solution from my doc for the "poo-terookis"... instead of taking Immodium pills after the fact to try and control what has already happened, I keep the Immodium liquid on hand. For a couple of months, I drank 1/2 to full capful every morning. It controls the tummy and sets the tone for the rest of the day, every day... and I had no more "uh-oh everyone get out of my way" moments. It is very controlling and soothing. The last couple of months have been very normal and I haven't needed the Immodium... but I have been taking Jarrow EPS Acidophilous everyday, and I think that really does the trick now. All that said, I have to eat a very clean diet to keep things stable. Fried and processed and spicy and junky foods set my stomach in a downward spiral. Clean and fresh and mild and home-prepared/home-cooked foods are what my stomach loves. Also, I read the Tykerb packaging again recently and as with many meds, you are supposed to stay away from all things grapefruit and get this... on Tykerb they tell you NOT to eat potato skins. So I don't, even though I used to love them. Hope this helps... __________________ Brenda NOV 2012 - 9 yr anniversary JULY 2012 - 7 yr anniversary stage IV (of 50...) Nov'03~ dX stage 2B Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo. Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin Feb'07~ Genetic testing, BRCA 1&2 neg Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin May'07~ Started Tykerb/Xeloda, no WBR for now June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic! Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2 Oct'07~ PET/CT & MRI show NED Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone) Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors. Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen. Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen. June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen. Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice. Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots. Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011. Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah. "I would rather be anecdotally alive than statistically dead." Last edited by hutchibk; 03-06-2010 at 07:32 PM..