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Old 07-07-2012, 02:46 PM   #1
MJsHusband
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Tykerb-Only Treatment

MJ is now on a Tykerb-only treatment. She finished her 4th cycle of Xeloda a couple of weeks ago(she refused to do the 6 cycles that were suggested due to the harshness). Is anyone else taking just Tykerb? Our oncologist said he will add Herceptin again at some point if necessary(even though it stopped working by itself). I understand the synergy discussion I've read on here so I'm good with trying again, if necessary. I would appreciate any thoughts on whether Tykerb-only is a good plan or if we should start up Herceptin again just in case?

Thanks,
Greg
__________________

08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)

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Old 07-07-2012, 04:19 PM   #2
chrisy
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Re: Tykerb-Only Treatment

Tykerb as a single agent has not Had a blockbuster track record, although I saw a presentation at San Antonio BC symposium a couple of years back which was teasing out which patients it DID work for. Recently a study was published showing synergy with herceptin, so I think that's a good option (maybe someone can find the link here on this site) especially since tykerb may be more protective for the brain.

Another option might be to add back xeloda, at a lower dose. I can hardly believe I'm saying that as I had a horrible time with xeloda - and then it didn't work very well anyway. Might be because I couldn't keep it in my system. But lower doses can be effective and it's not unusual to get a reduced dose.

Just my 2 cents...
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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
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Old 07-07-2012, 06:56 PM   #3
MJsHusband
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Re: Tykerb-Only Treatment

As far as we know, MJ is NED right now. We are waiting on biopsy results from a cyst but aren't expecting it to be cancer. Are chemos like Xeloda necessary if you are not currently trying to target any mets? I guess I understand targeting specific mets with chemo but don't understand the whole preventative treatment process. Are most patients taking Tykerb and Xeloda until they stop working? Thanks.
__________________

08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)

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Old 07-08-2012, 05:58 AM   #4
Becky
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Re: Tykerb-Only Treatment

I think that Herceptin should never be discontinued but that things need to get added to it.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Zometa every 6 months for osteopenia

NED 13 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 07-08-2012, 06:57 AM   #5
Lani
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Re: Tykerb-Only Treatment

If you look again at my MUST READ thread, it and scores and scores of other studies show the value of the continuation of herceptin beyond progression ie, it is not that herceptin is not effective, but that another pathway needs to be blocked in addition. Most experts in the field concur that few cancers will be cured with single agent orchestrated lethality, but rather with the combination of a few targeted therapies ie, let's imagine a combination like herceptin+pertumab+ tykerb + anti Estrogen agent if necessary. or herceptin+mTor inhibitor+HSP inhibitor etc.

In those cases where a particularly overwhelming driving mutation or fusion protein is found, monotherapy may be appropriate, but those will probably be the vast minority of cases.

I will post an article/link from today's NYT to illustrate that concept(has to do with leukemia, but principle is the same)
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Old 07-10-2012, 06:31 AM   #6
MJsHusband
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Re: Tykerb-Only Treatment

What hoops are people having to jump through to get Tykerb with Herceptin instead of Xeloda?
__________________

08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)

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Old 07-10-2012, 07:07 AM   #7
Rolepaul
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Re: Tykerb-Only Treatment

As always, Lani has great points. There are some women that can have a single med recovery, but the majority will need additional medications to attack resistant cells. TDM-1 has a dual action mode and may show additional single med effectiveness, but it is likely that a secondary medicine (Tykerb as an example) may be necessary for most women. The drug attached to Herceptin that makes up TDM-1 is significantly enough different that I have high hopes for it, but realistically there will need to be additional drugs in all likelihood. Even Pertuzumab with TDM-1 or Herceptin will be beneficial in many cases as they are two attachment points on the Her+ protein. This is a rapidly developing area of medicine that will be clarified for our daughters and grand-daughters. Even treatment in the brain/spine is undergoing significant change with drastic improvements in lifespan and removal of disease. I hope Herceptin in the near future becomes the "Polio" of today, with a vaccine to prevent occurence. My hopes are with my co-horts in getting this disease to only being seen in textbooks.
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Old 07-10-2012, 02:29 PM   #8
yanyan
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Re: Tykerb-Only Treatment

I remember reading someone's post on this forum that the tykerb and herceptin combo is being reviewed by FDA. Sorry i can't find the link. But it seems many stage V Her2+ people are on this.
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 07-10-2012, 03:13 PM   #9
Mtngrl
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Re: Tykerb-Only Treatment

I'm doing just Tykerb and Herceptin (no Xeloda) as part of a study, but my doctor told me she could simply prescribe it. I live in Boston. I agreed to do the study because I want to help others, and the requirements aren't too onerous. A friend of mine has been stable of Tykerb and Herceptin for 8 months. She's not in a study and also lives in Boston.
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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 07-18-2012, 04:27 AM   #10
Lauriesh
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Re: Tykerb-Only Treatment

I am Ned and am on herceptin and tykerb. My ins first denied it and I appealed and they decided to cover it.

I am actually taking a break this summer from both, as I am having a lot of side effects, but this combo has kept me Ned for 17 months.


Laurie
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diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 07-18-2012, 05:55 AM   #11
Barbara H.
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Re: Tykerb-Only Treatment

I have been on Tykerb/Herceptin since Nov. 2009 and remain NED. My insurance denied it, but later approved it with a letter from my oncologist. I did not want to take Xeloda.
Best,
Barbara H.
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Old 07-19-2012, 09:18 AM   #12
MJsHusband
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Re: Tykerb-Only Treatment

Thanks everyone for your input. We are heading on a much-needed vacation next week and then will meet with the oncologist when we get back. ~Greg
__________________

08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)

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Old 11-29-2012, 03:46 PM   #13
gdpawel
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Combination, Synergy and Maintenance Therapy

Greg

Combination chemotherapy frequently, but not always, has produced greater degrees of clinical benefit than single agent therapy. There are two potential explanations for this. First, when two or more drugs are given, there is a greater probability that at least one of the drugs will be active. Second, there is the potential for true synergy, where the whole is greater than the sum of the parts.

Among the most sought after attributes of chemotherapy drug combinations is drug synergy. Synergy, defined as supra-additivity wherein the whole is greater than the sum of the parts, reflects an elegant interaction between drugs predicated on their modes of action. While some synergistic interactions can be predicted based upon the pharmacology of the agents, others are more obscure.

The application of synergy analyses may represent one of the most important applications of the functional cytometric profiling platform; enabling clinicians to explore both anticipated and unanticipated favorable interactions. Equally important may be the platform's capacity to study drug antagonism wherein two effective drugs counteract each others’ benefits. This phenomenon, characterized by the whole being less than the sum of the parts, represents a major pitfall for clinical trialists who simply combine drugs because they can.

Laboratory oncologists feel that conceptually, maintenance allows for a cytotoxic exposure when the cell enters a “chemosensitive” period in its life cycle. Cancer cells that are “out surviving” their normal counterparts often do so in a quiescent stage (G0 Gx). The GO phase is a period in the cell cycle in which cells exist in a quiescent state, where the cell is neither dividing nor preparing to divide.

In order to capture these cells, drugs must be present in the body when these cells awaken from their dormancy. As we have now achieved increasingly durable remissions in diseases like breast cancer, small cell lung and ovarian, we are confronting patients in long-term complete remission.

Regardless of all of this, most of the cells that leave home don't survive the journey in the blood or lymph systems and many cancerous cells that eventually do lodge in a distant organ simply remain dormant, leaving it up to the immune system to take care of them. Researchers have learned that full-blown metastasis is an extremely challenging trade and the great majority of cancer cells are not up to the task.

Even those malignant characters that manage to slither their way into the blood or lymph system usually fail to do anything further. Most tumor cells lack the streamlined form of the blood and immune cells that are designed for cross-body trafficking, shear forces in the smaller vessels may rip the intruders apart.

Hope you enjoyed your much needed vacation!

Greg
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Old 11-29-2012, 04:29 PM   #14
Pray
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Re: Tykerb-Only Treatment

Greg I really need a guy like you at my appointments. You are priceless!
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 12-22-2012, 12:47 PM   #15
frankp
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Re: Tykerb-Only Treatment

You might think about monitoring serum HER2. It often falls when the targeted drug is work, or conversely rises when things aren't going so well. To learn more see www.labtestsonline.org and www.hertestonline.com.
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Old 04-16-2013, 02:13 PM   #16
daughter_1
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Re: Tykerb-Only Treatment

My mother was diagnosed with Pulmonary toxicity (interstitial pneumonitis) with additional infections (K. Pneumonae), towards the end of her 12 week Herceptin+Taxol cyle. After spending a considerable time in the hospital (4liter oxygen, Saturation at 90, fever) she's now recovering, but our oncos are uncertain whether this is a case of pulmonary toxicity caused by Herceptin or by Taxol!!! She was due for a year long treatment on Herceptin, but her oncos have suggested moving to Trykerb at this point, given that there is no way of knowing and they do not want to risk another episode of pulmonary toxicity.

Also, post her 4th taxol+herceptin cycle, she started developing unexplained tachychardia, which till date hasnt been explained. The oncos once again think it could be herceptin, but state that there is no way of knowing!!

Any inputs on the above situation would be great!

Questions in our mind right now - Is Tykerb as good as Herceptin? Was the episode really caused by Herceptin?? Is it a risk to move from Herceptin to a Tykerb only treatment given that she is node+ve.



Summary:
Dx: Stage 2b, 2 lymph nodes, Her2+ve, ER-ve, PR-ve, no mets
MRM: Sept 21st 2012, 4 AC cycles started on Oct 10th after which 12 Taxol+Herceptin weekly cycles were started in Jan.
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Old 04-16-2013, 03:03 PM   #17
gdpawel
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Study suggests Tykerb (lapatinib) may protect heart

http://cancerfocus.org/forum/showthread.php?t=3891

Herceptin (Trastuzumab) for Breast Cancer Linked to CNS Metastases

http://cancerfocus.org/forum/showthread.php?t=3907
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Old 04-17-2013, 12:11 PM   #18
frankp
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Re: Tykerb-Only Treatment

I'd suggest monitoring serum HER2 (www.oncogene.com and www.hertestonline.com) during a course of Tykerb treatment. If the serum value is rising or level, in all likelihood the Tykerb isn't working.
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Old 04-17-2013, 12:47 PM   #19
daughter_1
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Re: Tykerb-Only Treatment

Thanks everyone!

I'm also hoping to connect with someone at Roche/Genentech to register this as an adverse event or side effect and request them to connect me with someone who might be able to throw some light on this situation.

Any tips on how I can do that? Any email ids/helpline numbers?? My mother has been receiving her treatment in India, so Roche markets Herceptin here, but I'm assuming the two organizations must have a single clinical research team.

Thanks!
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Old 04-18-2013, 09:40 AM   #20
lovey
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Re: Tykerb-Only Treatment

Hi Daughter 1,
I was diagnosed in August 2009, stage 2B her2+, ER/PR - at age of 35. After my 3rd TCH, I had pulmonary toxicity and was admitted for a month and was on oxygen therapy. My oncologist also could not say whether the toxicity was caused by herceptin or taxotere, but we would not dare to continue with the same regime. Therefore I was given tykerb/ xeloda for 4 cycle and later the tykerb alone. I now have pulmonary fibrosis half of my lungs and causing me breathlessness on exertion but I'm doing fine. I don't dare to stop the tykerb as my PET scan shows 'possible treated metastatic lesion on pelvic bones'( I was not officially diagnosed with stage4)... I'm still on tykerb and have minimal side effects and at the moment NED,
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