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Old 02-13-2015, 10:19 AM   #1
supportwife
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Join Date: Oct 2014
Posts: 49
Does Tykerb + Xeloda cause headaches and GI issues

Hi All,

My wife is currently on Tykerb + Xeloda for about 10 days now. For the past 2 -3 days she has complaining about on and off headaches. In addition, she has mild diarrhea and severe heart burn. She has problem swallowing stuff because it gives some sort of acid reflux. Has anybody experienced this? Any suggestions as to how to make it better?

Thanks
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Old 02-13-2015, 10:57 AM   #2
kk1
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Posts: 182
Re: Does Tykerb + Xeloda cause headaches and GI issues

Hi;

From my experience with Tykerb and Xeloda at the same time, the side effects you listed are pretty normal as long as they are not extreme.

For the GI issues I found it was better to make sure the Tykerb and Xeloda were taken as far apart in time as rationally possible. I would take my Tykerb very early in the am (like 3am) and then go back to bed.

In the morning I would have breakfast and then about 30min to 1 hour later take the morning Xeloda (2 pills), same thing after dinner for the second 2 pills of Xeloda for the day.

The headaches may come from being dehydrated Tykerb is notorious for that.....I found when I drank 8-12ox of water ever few hours that helped a lot.

Rolaides and immodium we also always nearby. The GI side effect of the Xeloda really peak in day 10-14. She will feel better during the 7 day break.

btw- the pills for both Tykerb and Zeloda are ridiculously large. I found putting them one at a time in a small teaspoon full of jello made them swallowable --grease the skids so to speak. It is a mind over matter thing...after awhile I could do without the jello.

The combo worked very well for me...wishing her the same
__________________
KK1
April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-Nov 2019 scans clear done every 6 months


Feb 2020 - Fell out of the NED wagon hard! single liver lesions and large infect cyst. 3 weeks in ICU.
March 2021- 5 cycles perjeta, herceptin, navelbine. lesion stable.
June 2021 - 3rd liver resection to remove single liver lesion. Continued perjeta, herceptin.
Nov. 2021- PET scan show 5 hot nodes near liver. 9 cycles Kadcyla
June 2021- PET scan shows progression. nodes size unchanged but even more SUV uptake.

July 2021- start ENHERTU

Last edited by kk1; 02-13-2015 at 11:01 AM..
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Old 02-17-2015, 10:21 AM   #3
supportwife
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Join Date: Oct 2014
Posts: 49
Re: Does Tykerb + Xeloda cause headaches and GI issues

Thanks KK1,

My wife got IV fluids to fight diarrhea and fatigue. She is eating a bit but actually has no appetite. I was not aware that xeloda + tykerb could cause so much issues. She handled FEC better than this.

Is this normal?

Thanks
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Old 02-19-2015, 07:50 AM   #4
Mtngrl
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Location: Denver, CO
Posts: 1,427
Re: Does Tykerb + Xeloda cause headaches and GI issues

I haven't had Tykerb and Xeloda together, but I've had them. They both cause diarrhea.

As I've mentioned in some other posts, I have "GERD" (gastroesophogeal reflux disease) from something--one or more of the chemos I've been on. I take Nexium for that (a proton pump inhibitor.) One of the symptoms of GERD is trouble swallowing/lump in the throat. Search GERD on this site if you want more information.

Stay on top of the diarrhea. The weeks I'm on Xeloda I take one Imodium capsule at bed time. Then I take one any time I feel cramping/gas that might be signaling diarrhea. It's not perfect, but it does help. Since Tykerb is taken every day, the "prophylactic" dose of Imodium should probably be done every day.

I think probiotics and L-Glutamine might help with the diarrhea. I'm pretty sure Glutamine helps with neuropathy--another side effect of Xeloda. I take 7 to 14 grams a day.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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