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Old 02-05-2011, 06:59 AM   #21
Joan S.
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Re: herceptin + tykerb (no xeloda)

I have been on Tykerb since December 2010. No xeloda. I have also been on herceptin since July 2007. So far so good with Tykerb. I take 5 pills a day. It has reduced the tumor on my chest wall significantly. I go to the bathroom more frequently now but it sure beats the opposite conddition. I can always take immodium but haven't had the need to do that SO FAR. I have however, noticed that my mouth can get very dry. I don't know if this is related but I think I have yet another UTI. Has anyone else had a recurrent problem with uti's and found a solution besides antibiotics to control them?
Be well!
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Old 02-22-2011, 10:58 AM   #22
msleslie
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Re: herceptin + tykerb (no xeloda)

I've been on herceptin & tykerb since Aug. 2010. While on chemo (TCH), I had severe diarrhea & stomach cramps which resulted in my doctor suspending the tykerb until chemo was complete. I resumed tykerb 1000mg daily in January and have been doing well. This time around I do not have the diarrhea or stomach aches that occurred while on chemo. I'm scheduled to be on these drugs through end of July 2011.
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6/14/2010 - Self discovered Lump; Age 39
6/24/2010 - Biopsy results confirm breast cancer
Right breast, invasive ductal adenocarcinoma
HER2neu positive, BRAC I & II negative
7/8/2010 - Lumpectomy right breast, sentinel lymph node biopsy, & port-a-cath installed on left
Stage II, Size 3.2cm, Clear Nodes, Clear Margins
8/19/2010 - Chemo begins - Taxotere, Carboplatin, Herceptin & Tykerb all simulanteously; ALTTO trial arm 4
9/9/2010 - Chemo dose #2
9/30/2010 - Chemo dose#3
10/21/2010 - Chemo dose#4
11/11/2010 - Chemo dose#5
12/02/1010 - Chemo dose #6 - WooHoo, it is complete!
12/14/2010 - Simulation & Planning session for radiation
02/18/2011 - Completed radiation treatment (33 rounds)
08/04/2011 - Completed Herceptin & Tykerb
09/30/2013 - ultrasound guided biopsy (following annual MRI)
10/1/2013 - new cancer in left breast. 6mm discovered via MRI
10/28/2013 - bilateral mastectomy - no reconstruction
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Old 05-25-2011, 05:55 PM   #23
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Re: herceptin + tykerb (no xeloda)

Wow there's alot to know about taking Tykerb! I just started it a week ago and have had many trips to the bathroom! I go tomorrow for my Herceptin and it seems to be worse when I take them together.I have been on and off Herceptin four years now and occasionally have had bathroom issues with it.
My question is does anyone have a burning sensation in your nose? Also, a bunch of zits appeared overnight along my nose, is it a rash or a zit? They are actually sore too.I never have had acne other thatn the occasional zit, there a probably 5!And they are knid of white.
Thanks for all your posts,It's good to hear I'm not the only one!
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Old 05-28-2011, 10:46 PM   #24
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Re: herceptin + tykerb (no xeloda)

There is a soap that might help you with the rash, Cephalon, I found it at the local grocery store, the chemo nurses recommended it. It helped me.

I started Herceptin while still doing chemo in 2008, Tykerb was added a year later. Minimal problems, diahrea on rare occasions and the lovely rash. Started with 1000 mg. once a day, split the dosage into twice a day, 500 mg. each, to help with the rash.

Recently had to stay with family out of town for 4 months, going back and forth between 2 houses. Did not have the cephalon soap and ended up with the rash coming back strong. Back home now and using the soap again and rash is improving again.

Martha
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Old 05-30-2011, 03:05 AM   #25
Trish
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Re: herceptin + tykerb (no xeloda)

I am on Tykerb (and Herceptin and Abraxane) and and I get a sore nose with dry, broken skin. It has developed into an infection on at least 3 occasions and I have needed antibiotics for it. I also have a break for a few dys from the Tykerb which seems to work.
Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 07-07-2011, 10:35 PM   #26
mz.quail
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Re: herceptin + tykerb (no xeloda)

I just joined today. Was looking for something else, but can give you my experience with Tykerb. Started chemo with Docetaxel and Carboplatin in combinations with Trastuzumab and Lapatinib (Tykerb) last Aug of 2009. I was taking 4 pills a day and at around the end of the first week, I was very sick to stomach/diarrhea. I was asked to take 3. Didn't have any more nausea, but continued to have diarrhea to the point of getting a really sore butt, found that using the donut hole cushion I had really helped. I got through it..one whole years worth of horse pills. In time like everything else your body makes adjustments. It was something that I could quit at any time, but if it will help me and anyone else with this problem... I'm glad I did it.
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Old 07-15-2011, 07:56 AM   #27
schoolteacher
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Re: herceptin + tykerb (no xeloda)

mz.quail,

Welcome to our group. I am currently only taking Tykerb. I would really like to take Herceptin with it.

Amelia
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Old 08-07-2011, 05:30 AM   #28
Raquel
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Smile Re: herceptin + tykerb (no xeloda)

I've made it three months now on the Tykerb/Herceptin and I'm doing great! I had a hard time getting used to it but now the stomach issues have subsided for the most part.I started taking a probiotic and that really seemed to help me.I have learned alot from reading other womans posts and hope this can help somone else too!Let's pray the lung met is shrinking and I can continue on this regimin after my scan mext month!I use a tea tree oil cleanser for my beakouts now and that seems to work great too!
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Old 10-20-2011, 09:12 AM   #29
qpdawlsmom
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Re: herceptin + tykerb (no xeloda)

I know this may be unimportant, but have to ask. Will hair grow back while on the herceptin/tykerb combo? If there is already an answer out there, sorry for duplicating. Thank you for any input you have.
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April 2010 - found lump
4/20/10 - breast biopsy- dx 4/21/10
IDC HER2+ Stage IIa, grade 3
SLN biopsy + lumpectomy 5/4/10
2X Lymph Nodes pos + for microscopic metastasis
ct/pet scan 5/27/10 - 1 lymph node "hot"
TCH 6 cycles - completed 5 cycles, x 3 wks, T&C complete-10/8/10
Radiation, daily x 6.5 wks-complete 12/22/2010
Herceptin completed on 5/22/11
PET/CT 6/15/11 2 nodes + her2
axillary LN dissection 7/18/11 3 removed, 2 were + for IDC
IDC stage 2a grade 3 HER2, ER/PR-
4 rounds Adriamycin/Cytoxin every 2 weeks, complete Oct 2011, 750 mg tykerb daily + herceptin dose every 3 weeks, last PET scan NED
Tyker/Hercpetin ended June 2013
October Pet Scan - positive lymph node in subpectoral region - perjeta/herceptin and taxol regimine....X2 now perjeta/herceptin only
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Old 10-20-2011, 06:11 PM   #30
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Re: herceptin + tykerb (no xeloda)

I am on Xel/Tyk/Herc. I have very thick hair now. No hair loss, even with the chemo.
Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 04-15-2012, 02:51 PM   #31
Basilic
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Re: herceptin + tykerb (no xeloda)

I am on Tykerb/Herceptin combo for neoadjuvent therapy. I'm currently taking 1000 mg of Tykerb and getting Herceptin every 3 weeks. I just completed 12 weeks and have 12 more to go before surgery. I've had occasional diarrhea, but nothing debilitating. I did have some other symptoms, such as fatigue, weight gain, and breaking hair, but recently learned that my thyroid meds were being supressed by the Tykerb. Since ajusting the levoxyl, I noticed that my fatigue is not as sever and for a change, I even lost 2 lbs on my last weigh in. All in all, my symptoms have been minimal.
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Old 06-12-2012, 08:10 PM   #32
Mtngrl
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Re: herceptin + tykerb (no xeloda)

I'm glad I found this thread. I just did day 2 of Tykerb/Herceptin (no Xeloda). So far it doesn't seem too bad. But I want to take the Tykerb (1,000 mg) at night so that if there's diarrhea I can just deal with it in the morning. The nurse said not to switch too abruptly--like only advance the time by about 90 minutes a day. The first dose was in the clinic at 10 am, so it will take awhile at that rate to move to 10 at night, but I think I'll like that better.
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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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Old 06-12-2012, 08:24 PM   #33
Mandamoo
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Re: herceptin + tykerb (no xeloda)

Amy - I switched my Tykerb to night one day after taking in in the morning without any trouble. I took it in the morning then the following morning didn't take it then took it before bed that night. I am taking 4 tablets (100mg) now and don't get any diarrhoea but I have a looser motion first thing in the morning (I am also on Xeloda 7 tabs).
I hope this is a great treatment for you.
Amanda x
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Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 06-12-2012, 08:30 PM   #34
Mtngrl
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Re: herceptin + tykerb (no xeloda)

Thanks, Amanda.

Since it's part of a study and I have to log the date, time, and # of pills I think I'll be obedient (though that's never my first inclination. I constantly question authority.) I just have to watch for that "one hour before eating and/or two hours after" rule. I'm not usually vigilant about mealtimes.
__________________
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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Old 06-15-2012, 03:11 PM   #35
Carrielynn
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Re: herceptin + tykerb (no xeloda)

Hi. Well I will tell you that I do have permanent heart damage due to, especially, herceptin. Not so bad but a big change in the the muscle itself. So no more Herceptin for this girl. MUGA scans are done every 3 months, did you have that?
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Old 06-17-2012, 08:53 AM   #36
Basilic
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Re: herceptin + tykerb (no xeloda)

I have been on a drug trial for neoadjuvant therapy. I get Herceptin infusion every 3 weeks and take 4 tablets of Tykerb in the morning on an empty stomach. I've had very little problems with it. I started off with a tumor that measured >7cm by mammogram and ultrasound (>9 by MRI) and IBC. By the end of the first three weeks of treatment, my tumor had shrunk to half. When I had my 12 week mammogram/ultrasound, my tumor was 0.8 cm and too small for them to biopsy for the study. I'm now nearing the 24 wk trial and will be having surgery on July 3rd. I'll then find out if anything remains. I don't know how other patients are doing on this particular study, but so far my results have made my oncologist very happy (and me, of course).
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Old 06-17-2012, 02:00 PM   #37
Mtngrl
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Re: herceptin + tykerb (no xeloda)

Basilic,

There's at least one other member of this forum on that same study.

I just started it Monday. I don't like taking it in the morning. They told me to change gradually to night, and I have been doing that. I think I'll like it better at bed time.

I learned it makes me dizzy and gives me a belly ache if I take Tykerb on a very empty stomach. It's better if I eat a little about 2 hours before.

I'd be very happy if it got me to NED, or even if it just kept me stable. That's my hope.
__________________
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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Old 06-17-2012, 02:40 PM   #38
Basilic
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Join Date: Jan 2012
Posts: 13
Re: herceptin + tykerb (no xeloda)

The biggest issue I had with Tykerb was when I realized it was partially blocking the levoxyl I was taking at the same time. I tried moving the levoxyl to bedtime, but found that I wasn't disciplined enough to remember no to eat after a certain time, so my endocrinologist raised my levoxyl a bit to compensate. As far as GI issues go, I probably had looser stools in the beginning but now it rarely happens. As a result, I have lots of Imodium left over from that big bottle I thought I would need.
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Old 06-17-2012, 03:39 PM   #39
Kmswilson
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Join Date: Jan 2011
Posts: 40
Re: herceptin + tykerb (no xeloda)

Anyone with blurry vision issues and/or severe weakness in legs on Tykerb and Herceptin? I was on Herceptin for about a year, went to Tykerb and Xeloda about four months ago, now on Tykerb and Herceptin and no Xeloda for about the last month. I'm having a spine MRI Tuesday to see if it's the cancer in my spine or compression fracture I already have placing stress on my spinal chord. I wondered if anyone else might have experienced the weakness or blurry vision issues?
__________________
Krissi
12/27/10 - IDC, rt breast (approx. 15 cm), lymph nodes, age 36. 1/7/11 - stage 4 IDC, extensive liver mets, Bone mets (spine, sacrum, rib, sternum, upper arm), ER-/PR-, HER2+++; 1/12/11 - port, 1/17/11- startweekly Taxol/Herceptin, monthly Zometa
3/8/11- decrease in all tumors, bones healing. 3/11- 3 wks on/1 off Taxol/Herceptin, +Zometa
6/6/11 - decrease in all tumors, healing bones, 2-4 new liver lesions. 3 wks on/1 wk off Taxol/Carbo/Herceptin, +Zometa
7/29/11 - liver progression, others stable; 8/11-drop taxol/carbo, start Navelbine
12/11 - liver progression; begin AC, drop Herceptin;
1/12 - liver enzymes normal, 2/6 results show regression in liver, stable others, but 9 tiny brain mets (largest 7 mm). Begin 13 WBRs 2/6; 2/29-start Tykerb, 3/7, start Xeloda
5/2012- liver progression and regression, liver biopsy confirms HER2+++. drop Xeloda, start Herceptin, Tykerb, Zometa.
5/2012- brain MRI shows all lesions gone except 1, 2mm shrinking!
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Old 06-24-2012, 08:44 AM   #40
Sandra in GA
Senior Member
 
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
Re: herceptin + tykerb (no xeloda)

Krissi,
I did have blurry vision and that ended up being cateracts that had formed as a result of all the steroids given during my chemo. When I mentioned having problems with my vision, my onc. referred me to an opthomologist. They would not do the surgery until I completed the Tykerb because they don't know how it affects the healing process. They said they would have gone ahead if I had only been on Herceptin. Now I see better than ever.

I also had leg weakness that I attributed to low potassium. I had to take supplements during the time I took the tykerb because of the diarrhea. You may ask you dr to check that level. It could be simple to manage.

Good luck. I hope you are feeling better soon.
Sandra
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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