| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
 |
04-12-2007, 11:19 AM
|
#1
|
|
Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
|
Flori, stay in touch, as that is the regimen I will be on, Tykerb/Xeloda as well as Herceptin.
I am experiencing nausea as well, even thought it is only my 2nd day of Tykerb.
|
|
|
|
04-12-2007, 07:48 PM
|
#2
|
|
Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
|
Ester, I had symptoms the first two days and then felt fine the next few days. Don't really know why but you will be glad to know that on day 7 it's not worse than day 1 - and actually better - no nausea. My energy is dropping off but the emotional toll is exhausting. Right now I am wondering why my onc didn't put me back on herceptin with the Tykerb/Xeloda. It seems like a few people are on that regime. I have been too chicken to ask my staging or ask for a copy of my scans - very unlike me to bury my head. Maybe next week I'll ask. Stay in touch. Flori
|
|
|
|
|
04-14-2007, 06:10 AM
|
#3
|
|
Senior Member
Join Date: Sep 2005
Location: Maryland
Posts: 30
|
Last week, my Oncologist told me that he is adding Tykerb to my weekly Herceptin treatment in mid-June. I will be in an "EAP without Herceptin Failure".
The information in this thread (drug delivery, etc.) is an eye-opener. Many thanks to all of you, as I am able to ask my Oncologist more intelligent questions.
I will post information as I work through the process.
Thank you, again,
Margo
__________________
Margo
Diagnosed 08/2004 @ 45; Metaplastic Breast Cancer (MpBC)
Stage IV, HER2 3+, ER-/PR-, Met to Liver
08/2004 - Neo-adjuvant Taxotere/Carboplatin/Herceptin (TCH) - 4 rounds.
09/2004 - Herceptin - Weekly.
11/2004 - Liver RFA, followed w/TCH - 2 rounds.
12/2004 - Lumpectomy, axillary node dissection, followed w/TCH - 2 rounds.
05/2005 - Radiation - Breast, shoulder, neck (left side) - 35X
09/2005 - Developed severe osteoporosis - Boniva - monthly
04/2008 - Herceptin - Every 3 weeks (changed from weekly).
05/2012 - Mets: 3 new liver and 2 lymph nodes.
06/2012 - Start 16 rounds Navelbine and Herceptin weekly.
11/2012 - Liver resection, RFAs (8), lymphadenectomy (2), cholecystectomy.
12/2012 - Herceptin and Letrozole.
05/2014 - Mets: 5 aortocaval nodes & 1 mesenteric.
06/2014 - Herceptin/Perjeta/Taxotere - 6 rounds.
10/2014 - Herceptin / Perjeta - Open ended
04/2015 - Progression: Porta hepatic node, 2 aortocaval nodes.
05/2015 - Exploratory surgery treating progression, 12 nodes removed.
07/2015 - Restart Herceptin / Perjeta
01/2016 - Progression 8 nodes.
02/2016 - Starting T-DM1 (Kadcyla) - Open ended.
07/2017 - Progression.
|
|
|
|
|
04-14-2007, 12:03 PM
|
#4
|
|
Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
|
Xeloda, Tykerb boat
Dear Esther, Flori and Margo,
We are all in the same boat, the Xeloda Tykerb boat I guess.
I just turned in my paperwork to have it faxed to Tykerb on Friday. I'm quite nervous that my insurance will not pay for it. The social worker already had to fight it out with Anthem that they pay for the Xeloda.
Maybe they'll assist me at least. I'm also nervous about the side effects, this will be my second summer in a row on chemo. 
What schedule are you gals on for Xeloda? Two weeks on one week off?
I'm hoping to be on the one on one off schedule, but I'll have to contact my second opinion doc about that at MSKCC.
My other big question is: would COQ10 be safe/ appropriate to take along with the X+T??
If I ask my onc here I know he'll say NOOO.
So happy I met you gals!!
Sorry for my grammar, I did not grow up in an English speaking country.
Best to all, and prayers,
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
|
|
|
|
|
04-15-2007, 10:11 AM
|
#5
|
|
Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
|
Hi Odette,
I am on 14 days on xeloda, 7 days off, along with tykerb everyday. I'm on day #10 of the routine. So far, so good - meaning side effects are not horrible. I think the most helpful for me, is taking a probiotic everyday for restoring the gastro track. I don't know about coQ10. I also found that eating a very basic bland diet is better for my system - less violent stomach episodes and controls the diahrria. I have not had to take imodium yet - I would if it got bad enough. The only other thing I can say is have faith and believe in miracles. And write letters to your insurance people. Anything in writing is taken seriously and it forces them to worry about you creating a "paper trail" for a future law suit.
__________________
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.
|
|
|
|
|
04-15-2007, 06:02 PM
|
#6
|
|
Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
|
Dear Flori,
thank you for the encouraging words!
I do hope that this Tykerb Xeloda combination will work for all of us, but especially will wipe out your mets on the lung and sternum!
I will get that probiotic before I'll start, thank you for the recommendation.
The reason I'm so nervous about this is that my WBC is still low (3.0) from my last chemo and radiation, my oncologist does not seem to be concerned about it. I ended up in the emergency room/hospital twice with neutropenic fever when my counts were very low.
Here is some basic info about the COQ10.
http://www.cancer.gov/cancertopics/p...ymeQ10/Patient
I think some people take it to strengthen their heart while on Herceptin.
So far I've been just working on my diet, but I just arrived to the idea that COQ10 might be helpful to prevent recurrence, but now I'm not sure if it'll be OK with Xeloda (since it is an antioxidant). I'll let you know if I find out good information on this.
I do understand your hesitation about asking for your reports. I always get quite depressed lose a couple of days when I see my scan reports, but it does make me feel more in charge.
If you don't mind me asking: what kind of marker does your doctor use?
Soon you will get your week off of Xeloda. Let us know how you feel then?
Best wishes to you and prayers,
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
|
|
|
|
|
04-15-2007, 09:40 PM
|
#7
|
|
Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
|
Hi Odette,
He checked a bunch of markers - here's the list:
CEA (16.6)
CA 15-3 (36.1)
CA 125 (57)
CA 27.29 (67)
When I was on herceptin and everything else for that 20 months, I did accupuncture and chinese herbs. It seemed to help with my energy and my blood count held out. I am always slightly anemic it seems, so I ususally take an iron supplement from WHole Foods. I am not taking anything else yet, until I see if it is all okay with the doc. And you are RIGHT about knowledge being power - I know when I catch my breath I will move back into action mode. I still can't believe that I finally have metastatic disease. It just seems surreal. One year ago several doctors recommended that I go back on chemo, but my Oncologist and surgeon (who have kept me alive for 11 years) both said this disease has had plenty of time to "show up" and since I had no measurable disease except the tiny local recurrance, they both thought I should not go back on chemo. Now I regret it but I guess even if I had there are never any sure answers with cancer. The only sure thing is to pray and keep the faith. Thanks for your message. --Flori
__________________
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.
|
|
|
|
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 09:54 AM.
|
Hybrid Mode