Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
![Reply](http://her2support.org/vbulletin/images/buttons/reply.gif) |
10-15-2011, 04:51 PM
|
#1
|
Senior Member
Join Date: May 2010
Location: Owasso, OK
Posts: 44
|
Is there an "ideal" time of day to take tykerb?
just started tykerb/herceptin combo and wondering if there is a better time of day to take the tykerb? morning before breakfast or at bedtime? I see there are many that have had experience with these drugs and would appreciate your feedback. thank you.
__________________
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
|
|
|
10-15-2011, 10:13 PM
|
#2
|
Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
|
Re: Is there an "ideal" time of day to take tykerb?
I think the advice is to take it on an empty stomach (one hour before a meal)so I used to take it about 6am and have breakfast 7ish. But I read that the empty stomach was to standardise the absorption and that eating (especially fatty foods) can increase the absorption. If you are on the standard 5 daily (or 3 with Herceptin) you are probably wise to follow the manufacturer's instruction given it can cause severe diarrhoea in some. I actually now pay for my Tykerb and only have 2 a day so I have it with breakfast to maximise the absorption.
Good luck, hope it works well,
Trish
__________________
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
|
|
|
10-19-2011, 05:40 PM
|
#3
|
Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
|
Re: Is there an "ideal" time of day to take tykerb?
Hi,
I take my Tykerb at bedtime.
All my best,
Karen
__________________
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.
|
|
|
03-13-2012, 01:50 AM
|
#4
|
Senior Member
Join Date: Mar 2012
Location: Alabama
Posts: 121
|
Re: Is there an "ideal" time of day to take tykerb?
I changed from night to a new routine a couple wks ago and no more big D! I take it early in am when hubby wakes for work, then i go back to sleep for at least an hour, wake up, eat lightly and all is well.
__________________
Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.
3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
|
|
|
03-25-2012, 06:34 PM
|
#5
|
Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
|
Re: Is there an "ideal" time of day to take tykerb?
"standard 5 daily (or 3 with Herceptin)"
3 with Herceptin? Is that what folks typically take?
|
|
|
03-25-2012, 07:23 PM
|
#6
|
Guest
|
Re: Is there an "ideal" time of day to take tykerb?
I'm only taking 2 with Herceptin- 3 made me too sick. Anyone else out there taking Tykerb/Herceptin for stage 1 early breast cancer? My onc says any amount is better than none, better to take what you can handle than take more and have to stop- I had to take a week off when I got a fever and was having very dry eye problems, along with a dry cough.
|
|
|
03-25-2012, 07:27 PM
|
#7
|
Guest
|
Re: Is there an "ideal" time of day to take tykerb?
PS- I've tried taking it at different times of day, and bedtime definitely works the best for me.
|
|
|
03-25-2012, 08:24 PM
|
#8
|
Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
|
Re: Is there an "ideal" time of day to take tykerb?
Really? from Tykerb/Herceptin? Or was a chemo involved?
|
|
|
03-25-2012, 09:29 PM
|
#9
|
Guest
|
Re: Is there an "ideal" time of day to take tykerb?
I think it was from the Tykerb- but really, it's hard to say- I wasn't sick- One evening I took my temperature, it was only 99.9, then I Googled, "Tykerb fever"- The results said to call your doctor ASAP-
so I did- and he told me to take a week Holiday from the Tykerb- wish I could tell you more-
|
|
|
03-25-2012, 09:31 PM
|
#10
|
Guest
|
Re: Is there an "ideal" time of day to take tykerb?
I forgot to mention, I am not on any other chemo right now- I did take TCH, but that was months ago-
|
|
|
03-25-2012, 09:44 PM
|
#11
|
Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
|
Re: Is there an "ideal" time of day to take tykerb?
Thanks. Not to pry but..consider registering so you can more fully contribute here. Pick any old name.
|
|
|
04-03-2012, 12:28 AM
|
#12
|
Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
|
Re: Is there an "ideal" time of day to take tykerb?
I've been on Tykerb for several years. Best to start slowly. 2 pills a day for 4 days then add one and so on up to 5.
I take 3 per day on empty when I first wake up. Have coffee. Shower etc. and by then the hour has past and I can eat. Been on 3 per day for quite some time. Seems to be a new trend for long use w Herceptin. Otherwise (for me) too much pooperia and I would have to stop. Three a day seems to do the trick without sending me to the potty all day.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
|
|
|
08-16-2013, 10:45 PM
|
#13
|
Senior Member
Join Date: May 2010
Location: Owasso, OK
Posts: 44
|
Re: Is there an "ideal" time of day to take tykerb?
Thought I would check in and let everyone know how I am doing ![Smile](http://her2support.org/vbulletin/images/smilies/smile.gif) Doctor has allowed me to discontinue tykerb and herceptin after 2 years of treatments. While I am happy not to be taking the meds, I am scared, as this has been the only thing, I think, keeping the her2 at bay. Nervous, and every little pain in my head causes me to immediately think cancer! Will I ever got to the point where I'll just think its a headache? lol. Last pet scan was clear, go back in October for a follow up PET. any comments or suggestions you care to share on your journey after completing tykerb and herceptin treatment? I am thinking my hair will take off and start growing normally, or at least I can hope, lol. I think the tykerb made it extra curly this time around ![Smile](http://her2support.org/vbulletin/images/smilies/smile.gif) .
Thank you all for being here, this forum has been a great help and source of information for me over the past 3 years of my cancer fight.
__________________
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
|
|
|
08-17-2013, 05:50 AM
|
#14
|
Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
|
Re: Is there an "ideal" time of day to take tykerb?
Hey!
So glad you're doing well! I think of you often and was starting to wonder whether everything was okay.
Sounds like things are better than okay! Enjoy your newly growing hair, and your blossoming health!
Denise
|
|
|
08-17-2013, 11:13 PM
|
#15
|
Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
|
Re: Is there an "ideal" time of day to take tykerb?
Congratulations!
Obviously your doctor thought it's time to take a break ...
Whether or not the break is going to be a permanent one is hard to predict. It's understandable that you are anxious about the unknown. Just hope time will resolve it all ...
Take it easy - take a deep breath when you feel the anxiety hits.
We are all in this together ...
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
|
|
|
08-01-2014, 11:46 AM
|
#16
|
Junior Member
Join Date: Aug 2014
Posts: 2
|
Re: Is there an "ideal" time of day to take tykerb?
I take 3/day + Herceptin every 3 weeks. This has been my routine for nearly 5 years. I take 1 in the morning before breakfast and 2 at bedtime. The previous two years I was taking 4/day (never could tolerate 5/day) but I had continued challenges with big D.
|
|
|
08-01-2014, 11:48 AM
|
#17
|
Junior Member
Join Date: Aug 2014
Posts: 2
|
Re: Is there an "ideal" time of day to take tykerb?
I forgot to mention that along with reducing from 4 to 3 per day, I also take a pro-biotic now and that seems to be the magic bullet managing the big D and the associated rashes and discomfort. Good luck!
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 08:12 AM.
|