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11-25-2007, 05:45 PM
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#1
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Senior Member
Join Date: Sep 2006
Location: Nebraska
Posts: 154
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Thinking of stopping Tykerb
I want all of your opinions....a brief history for those that don't know my story..dx 2003 with stage 3b 35pos nodes Her2pos er/pr neg. Did Herceptin for ayear and a breast cancer vaccine in seattle. I'm 4 years out now. I talked by onc into giving me Tykerb off label this year. I fought my insurance company and won. I've been on it for about 3-4 months. I only take it during the week and give myself a break on the weekends due to diarrhea. Lately i've been having alot of stomach pains and diarrhea with it. I'm going for a ultrasound this week due to pelvic pain. I think it's the Tykerb. Well, my dilema is that part of me wants to stop it and part of me is scared to. I just don't want to stop it not really thinking about because if i recurr, then i will kick myself. My family wants me to stop it. I feel so much better off it. What are your thoughts????
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11-25-2007, 06:13 PM
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#2
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Senior Member
Join Date: Aug 2006
Posts: 492
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Well, you are 4 years out and you have managed 3-4 months of Tykerb. How long were you origianlly planning on taking it? You could take it IF you recur. But your odds are good that you won't since you are so far from dx!
These decisions are hard!
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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11-25-2007, 06:50 PM
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#3
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Hi Michelle,
I can sympathize with you. During Taxol I got into a very bad time with severe intestinal issues, even being hospitalized 5 days. I found a wonderful gastro Dr. who was able to get the diarrhea and severe abdominal cramps under control with medication, after all tests (CT, endoscopy and colonoscopy) came back negative. But until then life was miserable.
Are you taking prescription medication for the diarrhea or over the counter stuff? I hung in there knowing Taxol had an end, but you don't have that option with Tykerb.
I am down to my last two Herceptin treatments and am wondering if that is enough. You seem to be doing so well with the past Herceptin and the vaccine. Many feel Tykerb is the answer if you reoccur.
I have no answers but if you decide to stay on Tykerb see a gastro Dr. if you aren't already. Be sure they are familar with cancer treatments and the side effects of them.
Good luck,
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
Last edited by DonnaD; 11-25-2007 at 06:55 PM..
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11-25-2007, 06:52 PM
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#4
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Member
Join Date: Nov 2007
Location: Minneapolis, MN
Posts: 20
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How do you know it is the Trykerb?? Have you tired to medicated the side effect??
I took Trykerb for 2 years and finally from the right about of Imudioum to take>>
Just a thought.
__________________
MPB
IDC in 1996 Stage 3 Grade D 17 pos. nodes
2003 liver mets found HER2 Her/Taxol then did the first trail for Trykerb and Xelosa until 11-07
Six new tumors on neck will be starting the MCC_DM1 trail this week.
"Believe in miracles, and watch them happen!"
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11-25-2007, 06:53 PM
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#5
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Senior Member
Join Date: Oct 2005
Location: Beavercreek, Ohio
Posts: 67
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Michelle:
I'm on the TEACH trial since May. I believe that I got the real thing vs placebo. I too had diarrhea, but it has since subsided. Most of the side affects that I had in the beginning, have tapered off. Have you tried any anti-diarrhea meds? I know that for me, the Tykerb feels somewhat like a safety net. I never received herceptin and that has always upset me as it has been so effective for so many ladies. If the drug is affecting your quality of life day to day, going off is something to think about. I wondered in the beginning if it was worth all what I was going through. Even though the side affects were nothing like standard chemo, I felt like I was tied to the toilet on many days! I will pray for you and hope that you will know what is best for your situation. It seems that our decision making never ends. I'm thankful everyday for this website and the support that it provides to me and so many other women.
__________________
Joannie
Diagnosed April 2003
3.3 cm tumor left breast
HER2 positive 3++
ER/PR negative
Masectomy April 2003
4 Rounds of AC - dose dense
4 Rounds of Taxol - dose dense
Removed right breast prophalactically
Full reconstruction with implants/nipples
No Late Herceptin Received
Started Tykerb TEACH Trial in May 2007
Completed Tykerb TEACH Trial in May 2008
5 year NED August 27, 2008!!!
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11-25-2007, 08:21 PM
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#6
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Senior Member
Join Date: Sep 2006
Location: Nebraska
Posts: 154
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Joannie, how long are you going to take the tykerb in the trial??
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11-25-2007, 11:17 PM
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#7
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Acidophilus & Bifidus
Dear Michele -
So sorry you are still bothered by the intestinal stuff. You may have missed a post by my friend Joanna a while back. Here is the link:
http://her2support.org/vbulletin/sho...ht=acidophilus
She called yesterday and gave me a really good report on how well she is doing with the Tykerb and how the Acidophilus with Bifidus really keeps her in control. I hope she will post soon as she will have some tests coming up.
Hope this will help you.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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11-25-2007, 11:46 PM
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#8
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Are you on Tykerb by itself? Or are you taking it with anything else? I would like to suggest three things before you give up. 1) Make sure you are not taking any supplements with Folic Acid in them - and you will find FA in multi-vits and B-complex. FA can seriously worsen the side effects of Tykerb. 2) make sure you area not eating or drinking grapefruit products. 3) Take a close look at your daily diet. Make a concerted effort to eat as clean and really healthy as you possibly can. Fresh foods instead of packaged. No fast food, junk food or sodas. It made the difference for me... I only have a bout of diarrhea one day every month or 6 weeks at the most and I have been on Tykerb/Xeloda for over 6 months.
__________________
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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11-26-2007, 05:15 AM
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#9
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Senior Member
Join Date: Oct 2005
Location: Beavercreek, Ohio
Posts: 67
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Michelle:
I'll be on the trial one year.
Joannie
__________________
Joannie
Diagnosed April 2003
3.3 cm tumor left breast
HER2 positive 3++
ER/PR negative
Masectomy April 2003
4 Rounds of AC - dose dense
4 Rounds of Taxol - dose dense
Removed right breast prophalactically
Full reconstruction with implants/nipples
No Late Herceptin Received
Started Tykerb TEACH Trial in May 2007
Completed Tykerb TEACH Trial in May 2008
5 year NED August 27, 2008!!!
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11-26-2007, 07:31 AM
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#10
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Senior Member
Join Date: Mar 2006
Posts: 306
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The fine print enclosure that comes with the Tykerb does have a reason or two where a dose reduction is in order. Perhaps that might help if you really want to stay on it?
pattyz
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11-26-2007, 11:10 AM
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#11
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Senior Member
Join Date: Oct 2005
Location: southern california
Posts: 287
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Micheleu,
Are you stage 4? I guess I am wondering why people are doing treatments other than Herceptin when they are not in active disease. Could someone please explane this to me. I know the feeling of being unprotected but I also am leary of the cancer, if it is lurking, to become resistant to medications and then flare up while taking meds. I have not talked to my onc about this so I may be uninformed.
Alice
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