HonCode

Go Back   HER2 Support Group Forums > Herceptin / Tykerb
Register Gallery FAQ Members List Calendar Today's Posts

Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb

Reply
 
Thread Tools Display Modes
Old 01-04-2008, 12:31 PM   #1
Luvcr
Member
 
Join Date: Apr 2007
Location: Ohio west of Cleveland
Posts: 6
Tykerb and epigastric pain/right upper quadrant

I Have Been On Tykerb Since May Of 07. The Last Few Weeks I Have Been Having Unbelievable Pain In My Upper Abdomen And The Right Side Upper Region. I Have Been Having Nausea Etc.....having To Take Pain Meds And That Still Doesnt Take It Away. I Take My Tykerb 5 Pills At Night Before I Go To Bed. Doc Did Ct Of Abdomen And Hida Scan To Check My Gall Bladder. They Say It Is My Gall Bladder And It Is Set Up To Be Removed This Coming Monday. Sure Dont Want To Have Unnecessary Surgery - Has Any One Had This Type Of Pain Caused From The Tykerb? Please Email Asap. Thanks So Much. Cheryl
Luvcr is offline   Reply With Quote
Old 01-04-2008, 04:23 PM   #2
Becca
Senior Member
 
Join Date: Sep 2006
Location: East Central Illinois
Posts: 89
Cheryl, I have abdominal cramps at times on the T/X, but lower down than your pain. Of course you don't want to have any unnecessary surgery. However, if your doctors did tests and they feel confident it is the gall bladder causing your pain and should be removed, it must be the gall bladder. Is there a reason that you doubt what they are saying must be done? I know how hard it is to face surgery, but you will get through it just as you have with each step in the past. Hope you feel confident in what the doctors are telling you before Monday. Thinking and praying for you.
Becca is offline   Reply With Quote
Old 01-04-2008, 04:26 PM   #3
Rupali
Senior Member
 
Join Date: Dec 2005
Posts: 148
Hi,
I have been on tykerb alone since November 29th, 2007. I also take 5 pills at night and suddenly from last one week have a dull achy pain on the right side just below my ribs...
Did you also start having dull achy pain in the begining......

I am seeing my onc on Monday but I am really scared as to what it is...
Regards,
Rupali
Rupali is offline   Reply With Quote
Old 01-05-2008, 08:10 PM   #4
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
It is not unusual to have a coincidental medical dx while going through cancer treatment... chances are that even if you weren't in cancer treatment, you might have gall stones and need your gall bladder out. Here's an informative website: http://www.umm.edu/patiented/article...e_000010_2.htm
__________________
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."
hutchibk is offline   Reply With Quote
Old 01-08-2008, 10:50 PM   #5
chrisy
Senior Member
 
chrisy's Avatar
 
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Oh, Brenda you little heartbreaker. You mean that other things can go wrong that are completely unrelated to cancer????? On the other hand, it's sure funny that we can feel relieved to have arthritis, slipped discs, etc etc!
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
chrisy is offline   Reply With Quote
Old 01-11-2008, 05:43 PM   #6
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
I know Chrisy - hard to believe! LOL. It is so easy for us to assume that everything is related to our cancer. I bruised a rib the other day and it is pretty painful. I saw the doc today and asked if it could be related. He looked at me an laughed and said, nope, sorry to disappoint, it's just a bruised rib and has nothing to do with cancer... what a relief that was, ouch.
__________________
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."
hutchibk is offline   Reply With Quote
Old 01-14-2008, 03:23 PM   #7
Kristi
Member
 
Join Date: Jan 2008
Location: San Francisco Bay Area
Posts: 7
I have recently started taking Tykerb Xeloda, and am wondering if anyone can give an idea of how long it takes before it should start working?
Kristi is offline   Reply With Quote
Old 01-14-2008, 04:43 PM   #8
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
Hi Kristi - I saw less enhancement of my brain mets (3 of them, appx 9 mm each) after 1 month, shrinkage of the brain mets by almost 1/2 by 3.5 months, and all were completely gone, as well as bone met in neck, at 5 months. I am now staying on the combo (at 8.5 months) and still NED-i.e. no evidence of disease. Of course, everyone is different, but I have had wonderful luck with this combo.

You should post this as a new question to be sure others see it and you can get a good range of answers... just click on 'new thread' at the top of the Herceptin/Tykerb page.
__________________
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."
hutchibk is offline   Reply With Quote
Old 10-15-2010, 10:07 PM   #9
Unregistered
Guest
 
Posts: n/a
Re: Tykerb and epigastric pain/right upper quadrant

I'm on the combo herceptin and tykerb, I take 4 pills, I rashing so bad my face and nose I feel like i'm on fire. My pet scan is normal. My dr. said to reduce to 3 pills. I like to have a break from all meds...so tired of this, but no pain, just diarea bad.
  Reply With Quote
Old 10-16-2010, 10:13 AM   #10
Nancy L
Senior Member
 
Nancy L's Avatar
 
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
Re: Tykerb and epigastric pain/right upper quadrant

Gallbladder surgery is not invasive most of the time these days. My sister had to have hers removed while she was a cancer patient. I wonder if there is a higher incidence of failed gallbladders for cancer patients.
Nancy L is offline   Reply With Quote
Old 01-31-2012, 09:04 AM   #11
Unregistered
Guest
 
Posts: n/a
Re: Tykerb and epigastric pain/right upper quadrant

My mother (Michigan, U.P.) has been on Tykerb and Herceptin for the last year or so. She is currently having trouble with gall bladder pain, "sludge"(tiny stones) in the gall bladder, with fluid around the gall bladder.

These medications have been keeping the breast cancer that metasized to her liver at a standstil, or very slow progression, but the intense gall bladder pain is unbearable. She has to go in for shots of demerol and try to stay on a very bland and limited diet of rice, clear liquids, etc.

Her oncologist is being contacted and will read her HIDA scan that she just had yesterday, Jan. 30, 1012.

Best wishes to you, and my God bless! I know how painful that condition must be.

Sincerely,
Karen N.
  Reply With Quote
Old 01-31-2012, 01:28 PM   #12
Unregistered
Guest
 
Posts: n/a
Re: Tykerb and epigastric pain/right upper quadrant

My mom's report on her HIDA test was NORMAL. Doc says they don't know what caused the gall bladder attacks, but she can resume her normal life. She still has to be very careful what she eats, though, as she could have another attack. We are guessing it is the medications.
  Reply With Quote
Old 08-06-2012, 05:34 PM   #13
PatE
Senior Member
 
Join Date: May 2010
Posts: 41
Re: Tykerb and epigastric pain/right upper quadrant

HI,
I am on Herceptin and Tykerb (5 pills) and experiencing some right side/upper stomach pain. I had the HIDA scan done but said my gallbladder is fine. I am also experiencing upper left arm muscle pain near the shoulder cap, gets pretty intense at times. I feel like I am falling apart, is anyone else experiencing these symptoms. The arm pain starts soon after the stomach starts feeling sick. I generally just feel tired all the time.
I have been on Herceptin since 2008 and Tykerb since this past February.
Thanks for any help.
Pat
PatE is offline   Reply With Quote
Old 08-08-2012, 07:48 PM   #14
Emy
Senior Member
 
Join Date: Mar 2012
Location: New York, new york
Posts: 73
Re: Tykerb and epigastric pain/right upper quadrant

I have been taking tykerb 6 pills per day with herceptin every 3 weeks since march 2012....'herceptin stopped working after 6 months...I also get pain in my upper right side and am nausea sometimes.....pet scan was better this time and tumor markers dropped from 86 to 37......
Emy is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 03:54 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter