Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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01-19-2009, 01:20 AM
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#1
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Junior Member
Join Date: Mar 2006
Posts: 4
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Added Tykerb to Herceptin (w/o Xeloda)
I've recently been put on tykerb along with herceptin (over 5 years) and faslodex (2 1/2 years). Onc started me in December 5 tykerb tabs in the am. After less than a week I was vomiting with diarrhea and couldn't get a handle on it. After a couple of liters of fluid and visit with onc, we decided to stop the tykerb for about week...which was great because it gave me a good Christmas week. Upon restarting the tykerb, we decided to ramp up the dosage and change to taking it at night. Started with 2 pills and every 3-4 days add another one. Well I am at 4 pills and having a time with diarrhea everyday and just occassional nausea. Got a rx for lomotil which helps a little with the diarrhea. I am upset that I haven't been able to go up to the 5 a day my oncs wants. And this diarrhea will just be something I will have to live with. I've noticed the nausea seems to be more of an issue when I take my extended release pain med. It doesn't seem to matter what I eat...following the BRAT diet didn't help.
Couple of questions:
Anyone else just doing tykerb w/o xeloda?
Any ideas to reduce the diarrhea?
My QOL has been pretty good since my bone mets dx over five years ago. Recent progression to existing rib met and couple of new ribs showed up on last scans in December. Hence adding the tykerb to see if it would boost effectiveness of herceptin. I am really down about my declining QOL recently. Today was the last straw when I didn't make it to the bathroom..humiliating. If just adding tykerb has this kind of effect on me...how the heck am I going to handle chemo..the next step.
A very down day...I will see onc in about 12 hours. I'll see what she says.
Hugs,
Aus
__________________
4/2002 Lumpectomy 2.5cm, node disection, 3/17+ IDC, Grade III, ER weak +, PR -, Her2+++, 4 AC, 4 Taxol, 35 rads
4/2003 Hyst/Oomph
12/2003 Lump in same local, strong ER+, mets to skull, spine & outer spinal cord, started Hecpetin, Femara & Zometa, rads to mets areas, NED
05/2006 PET scan 4 tumors in breast (AGAIN),
Bi lat mast, stopped Femara, Zometa, began
Faslodex
06/2007 Progression to ribs, currently doing rads to ribs, continuing Herceptin and Faslodex
12/2008 Progression to same rib, two new ribs showing on scan. Began Tykerb, while continuing Herceptin and Faslodex
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01-19-2009, 06:19 AM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Hey Aus!
I believe that the brain power on this site will help you find a way to do the Tykerb and still have good QOL! I think Brenda is the master of Tykerb QOL, but others will have ideas for you too. I think that this site is so much smarter than the side effects and mets that attack us. Get all these brain cells crackin' and magic occurs.
Don't give in to that awful stuff girl. Believe that help is on the way for you.
If Kurt Warner can get to the super bowl, you can defeat those mets and still have good QOL.
I'm believin' and prayin' for ya! ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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01-19-2009, 07:37 AM
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#3
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Member
Join Date: Aug 2007
Location: Georgia
Posts: 22
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Aus - I'm taking only 2 Tykerb pills/day. I started with 5/day, but se were too severe - not only diarrhea, but infected fingers & toes that would not heal. I had to stop herceptin because of congestive heart failure, so Tykerb was my only option. My mets are under control so far (4 1/2 years), even with only 2 pills/day. I do get faslodex every month, and zometa every other month. My point is, don't fret about not being able to take all 5 pills/day - a lesser dose may work just as well without all the difficult side effects.
Hang in there,
Beth
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01-19-2009, 10:02 AM
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#4
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Junior Member
Join Date: Jan 2008
Posts: 1
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I'm taking four Tykerb a day and I do still have trouble with diarrhea. Immodium does help but have to take several before it works. You may want to try it.
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01-19-2009, 07:33 PM
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#5
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Junior Member
Join Date: Mar 2006
Posts: 4
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Thank you so much for your replies. I met with onc today and here's what we decided. I am going to stop the tykerb for a few days and start back only taking three and stay at three tykerb a day. I am so happy with this plan. Four of these horse pills a day is just a bit too much for me.
I was taking imodium like candy, but a rx for lomotil has helped more. Zofran has helped too..no more vomiting..just some nausea.
Beth, so glad you mentioned the fingers/toes. Just today I have a 'split' open place on the end of my thumb. I was chalking it up to artic blast cold we've had in here in the south recently. I've never had this happen before..so perhaps it is the tykerb. Didn't think to mention it to onc.
My attitude is so much better today. I was afraid the onc would not want me to just do the lower dose. SO happy she suggested it!
I am so happy to be connecting with other tykerbies. On another site, everyone who posts seem to be doing xeloda with tykerb.
Thanks so much! I look forward to helping each other as we kick our mets to the 'kerb'.
__________________
4/2002 Lumpectomy 2.5cm, node disection, 3/17+ IDC, Grade III, ER weak +, PR -, Her2+++, 4 AC, 4 Taxol, 35 rads
4/2003 Hyst/Oomph
12/2003 Lump in same local, strong ER+, mets to skull, spine & outer spinal cord, started Hecpetin, Femara & Zometa, rads to mets areas, NED
05/2006 PET scan 4 tumors in breast (AGAIN),
Bi lat mast, stopped Femara, Zometa, began
Faslodex
06/2007 Progression to ribs, currently doing rads to ribs, continuing Herceptin and Faslodex
12/2008 Progression to same rib, two new ribs showing on scan. Began Tykerb, while continuing Herceptin and Faslodex
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01-20-2009, 07:54 PM
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#6
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Senior Member
Join Date: Aug 2006
Posts: 79
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Hi,
I take both Tykerb (5 per day) with Herceptin. I have occasional diarrhea but not bad. I am having problems with infected toes and splitting skin around nails. You might try taking Tykerb at night--that seems better for me.
Kathy T
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01-21-2009, 08:04 AM
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#7
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Senior Member
Join Date: Jul 2008
Location: Durham NC
Posts: 73
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Hang in there! The cracked skin on your thumb is from the tykerb. I have 6 cracks on my fingers now, and tons on my feet. I just keep going with lotion, antibiotic cream and keeping them covered. I have had good results so far with tykerb so keep trying. It was hard for me at 1st, too, but now I think my body is finally adapting (after 5 months) with only the occasional yikes.
Keep up the great work!
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01-22-2009, 04:20 PM
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#8
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Senior Member
Join Date: Oct 2005
Location: Saratoga Springs New York
Posts: 136
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tykerb/gemzar
I was on Tykerb with xeloda about a year and half ago and had a terrible time with it. I had to go off due to progression and side effects. I was currently put on tykerb with Gemzar. I started with 2 pills a day for about 2 weeks, then 3pills for 2 weeks and I am now at 4 pills perday with no side effects yet. I take my pills a couple hours after breakfast and an hour before lunch. The first time I was on tykerb I took it at night and it kept rising up in my throat when I layed down. I hope your system gets used to it soon. It's O.K. to back down a pill here and there if it is going to make you sick. If the tykerb is running right through you or you are vomiting, you can't be absorbing it as much as you probably should be. I hope your feeling better soon. Sally
__________________
Dx March 2004 HER2+ er/pr+ 8/16 + lymphnodes mets to the liver Stage IV / 6 cycles of TCH and 33 rads . NED Continued Herceptin 3 years w/ Femara. Tumor markers start to rise in Jan of 2007 and swiched to Tamoxifen. August of 2007 found more mets to liver and lymphnodes outside of liver. Went on Tykerb/Xeleoda--spots on liver gone found large mass between intestines. March 2008 started TCH. Stopped Carboplatin due to allergy. Still on Taxotere and Herceptin. Nov 2008 mass is gone. 3 new spot on liver and one on spine. Radiation on spine. tykerb/gemzar for liver mets. PET in April 09 showed shrinkage still a little activity, continue tykerb/gemzar until Aug 09. PET showed new spot on my spine more on my liver and a bunch of enlarged lymphnodes in upper chest. Start Adriamycin Sep 09. more radiation on spine . April 2010- Still on Adriamycin 3wks on 1 wk off and zometa every 28 days. PET -May 2010 showed progression. Starting Herceptin/Navelbine on June '10
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01-25-2009, 07:38 PM
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#9
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I was on 5 Tykerb a day with Xeloda for 18 months and did fantastic, no sickness of any kind.
Then, in October the doc switched me from Xeloda to Herceptin with the Tykerb and one would have thought I had e-coli poisoning or something. Diarrhea and gastro problems were terrible. After about 3 weeks, we dropped the dose to only 4 Tykerb and whew, all was well again. My doc says that 4 is actually now the recommended dose with Herceptin, with more than adequate efficacy.
I think your plan to try 3 and maybe ramp up to 4 from there is a good one. Don't worry too much about 5 - you are getting plenty of Tykerb.
And many of us have had success taking it at bedtime.
__________________
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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01-29-2009, 02:53 PM
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#10
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Might I also suggest acupuncture? I can not say enough about the wonderful acupuncturist that practices at my onc's office. I am convinced she is the reason my side effects to all of the drugs I have been on have been so mild. It is really amazing what acupuncture can do for digestion, nausea, and even emotional problems (anxiety).
I've only been on Tykerb for about 4 weeks and other than a rash on my skin (which the Suki Lotion took care of - thanks VickieH!) and the cracking on my fingers (which a thick application of salve every night seems to be taking care of), all has been good.
Hoping you find some relief soon!
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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01-29-2009, 03:22 PM
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#11
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Junior Member
Join Date: Mar 2006
Posts: 4
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I found the greatest thing for the 'split' places on my fingers. Liquid bandage!! I got a store brand..not the name brand. Not only do I have the benefit of keeping germs out, by sealing it, it stopped the pain I was experiencing every time I touched something and the split would reopen. This has been an amazing 'cure' for me. I hope it will help those of you having this side effect on your fingers and/or feet.
Hugs,
Aus
__________________
4/2002 Lumpectomy 2.5cm, node disection, 3/17+ IDC, Grade III, ER weak +, PR -, Her2+++, 4 AC, 4 Taxol, 35 rads
4/2003 Hyst/Oomph
12/2003 Lump in same local, strong ER+, mets to skull, spine & outer spinal cord, started Hecpetin, Femara & Zometa, rads to mets areas, NED
05/2006 PET scan 4 tumors in breast (AGAIN),
Bi lat mast, stopped Femara, Zometa, began
Faslodex
06/2007 Progression to ribs, currently doing rads to ribs, continuing Herceptin and Faslodex
12/2008 Progression to same rib, two new ribs showing on scan. Began Tykerb, while continuing Herceptin and Faslodex
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