| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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11-03-2008, 06:52 AM
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#1
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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For those who couldn't complete treatment due to Cardiotoxicity
I know that this issue was discussed here several weeks ago. I found this interesting information this morning:
FinHer study
The data on the 116 patients in the FinHer study is for 3 years of follow-up and reveals that short duration concurrent treatment with Herceptin is effective at preventing recurrence of disease. In
Finland both the 52-week course of concurrent treatment with Herceptin and the 9-week course are available to women. However Finnish doctors prefer the 9-week course because there is less likelihood of cardiac damage and because the doctors were involved in the FinHer trial and saw for themselves the benefits to their patients of the 9-week course. This experience makes a big difference when doctors are making recommendations to their patients on best treatment options.
Sledge study
The data on the 227 patients in the Sledge study is for 5 years of follow-up and it showed no difference in survival rates between those who received 10 weeks of concurrent treatment with Herceptin and those who received it concurrently for 52 weeks.It is obvious that the issue of concurrent treatment with Herceptin versus sequential treatment is at the core of this debate. The results of these studies revealed that concurrent treatment with Herceptin results in significantly better efficacy than sequential treatment with the drug, all of which casts grave doubts on the superiority of the sequential treatment regimen being promoted by Roche.... A further trial is being planned to find the answers. It will be headed by Professor Heikke Joensuu of the University of Helsinki in Finland, who headed the FinHer trial and who has extensive international experience in trial design and management.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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11-03-2008, 07:36 PM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I am having a brain poot - what are the conclusions?
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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11-03-2008, 08:50 PM
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#3
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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The conclusion was that there was no great difference in results whether Herceptin was given over a short period 9-12 weeks or 1 year.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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11-04-2008, 07:26 AM
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#4
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Senior Member
Join Date: Jan 2007
Posts: 73
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So what about those of us who received herceptin sequentially and had to end treatment early due to cardiotoxicity?
Paris
__________________
Diagnosed 11/06 IDC left breast Stage 1, High Grade w/extensive High Grade DCIS. Right breast extensive hyperplasia w/calcifications.
ER-/PR- HER2+++
Bi-lateral masectomy 12/15/06 w/expanders
SNB Node Negative
Chemo Taxotere, Cytoxan 2/07-4/07
Herceptin Started 5/07
Exchange surgery 6/15/07
Herceptin stopped after 12 rounds due to herceptin induced cardiomyopathy
On heart meds 'til?
Age 40 at diagnosis
Cancer may have been a defining moment but it does not define me!
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11-04-2008, 06:47 PM
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#5
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Member
Join Date: Jul 2008
Posts: 9
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My take on this
I have been one of those people inquiring recently on this issue because my sister was taken off Herceptin last week after 6 months of treatment.
Joe was kind enough to give me the same info as posted here, and my take on this is that the chance of my sister having a recurrence is no more increased because she can't get the full 52 weeks.
Joe, any idea what Dr. Slamon's take on the FinHer study is?
BonnieD
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11-04-2008, 08:53 PM
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#6
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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No doubt that I will see him in San Antonio, if I can get his ear, I'll ask him.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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11-05-2008, 08:50 AM
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#7
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Member
Join Date: Dec 2007
Location: Ohio
Posts: 21
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OK, help me understand. It seems the CONCURRENT piece is the important one here. Does that mean concurrent with Taxol, or other chemo, or what? For example, those of us who took AC, then Taxol/Herceptin...is that the protocol they suggest is good, or does it mean starting Herceptin even earlier??? Thanks for sharing this info with us, Joe.
__________________
dx 07/20/07 with IDC
left MRM with expander 08/07
2.2 cm er/pr-, her2+ all nodes clear
2/08 BRCA negative
4 AC dose dense 09/06/07-10/18/07
12 weekly Taxol/Herceptin 11/01/07-01/18/08
Herceptin 1 year/done 10/31/08!
2/08 reconstuction
port out 12/4/08
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11-05-2008, 04:04 PM
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#8
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Senior Member
Join Date: Jan 2008
Posts: 154
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Thanks for posting this. My onc recently stopped Herceptin after 7 treatments because of low Muga score, and he told me about this finding and doesn't feel that I need to go back on it now even when the score improves.
It's nice to get a second opinion like this after all of the data that has been presented on a full year of treatment.
I admit that I was questioning in my mind if the oncologist was right after all of the info that I've learned from this board!
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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11-05-2008, 05:31 PM
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#9
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Member
Join Date: Jul 2008
Posts: 9
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Can Herceptin be re-started
Does anyone know that once you are removed from Herceptin because of Cardiac issues, can it ever be restarted if the need is there, provided of course the heart issues have corrected itself?
Or once removed, that's it??
Bonnie
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11-05-2008, 11:20 PM
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#10
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Bonnie, Yes, if all issue's with the heart is resolved herceptin can be started again with no problems most of the time. Usually after a break from herceptin they will check the heart with a muga and if its 55 or above you can usually start back on it.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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11-06-2008, 05:04 PM
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#11
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Bonnie,
I had to come off Herceptin last year for about three months.
My left ventrical ejection fraction dropped by more than 10 percentage points (from 70% to 57%), which is a guideline for stopping Herceptin even though I wasn't under 50%, the lower limit.
After a while my LVEF went up again to 63% and has stayed there since.
I've switched from muga scans to an echocardiogram, and had an echo the other day.
Joe,
Although this might sound "crazy," can you ask Dr. Slamon whether he thinks that the Finnish gene pool is small enough to affect the outcome trials. I would imagine that despite worldwide migration, etc., that the gene pool in Finland is small, relatively speaking, and I've always wondered what kind of influence this might have had on the FinHer trial.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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11-06-2008, 07:24 PM
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#12
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Member
Join Date: Jul 2008
Posts: 9
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Appreciate the feedback
I really appreciate all of your feedback. Very encouraging to find out that if necessary, Herceptin can be started again.
Joe, thank you so much for your comment, if you can get Dr. Slamon's ear. When are you going to San Antonio?
This site has been wonderful. My sister has a really hard time getting past the Her2 status, so when I tell her the positive feedback I get from this site, I can tell each time she gets a bit more hopeful. Right now she is just trying to focus on staying well and taking care of 4 very active children (ages 5,10,12 & 13) who are in every sport imaginable, so I try to be the researcher in the family, and with the help of some many wonderful people here, we have learned so much!
THANK YOU!!!
Bonnie
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