| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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10-17-2007, 04:31 PM
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#1
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Senior Member
Join Date: Oct 2005
Location: Saratoga Springs New York
Posts: 136
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new tykerb dose
I have been taken off tykerb/xeloda for 2 weeks so my system could recover. I'm starting out slowly this time. I am taking 2 tykerb a day and then in a week I will add in the xeloda 2 twice per day. Has anyone ever heard of taking such a low dose and having it work? I'm sure he will up my tykerb as we go along, assuming I am tolerating it o.k. Sally
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10-18-2007, 03:11 PM
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#2
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Senior Member
Join Date: Sep 2006
Location: East Central Illinois
Posts: 89
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Sally, hope you are feeling better. I can't help you much on your question, but have had my xeloda lowered twice. I am to take the tykerb 5 a day if possible, or less if necessary. Occasionally I vomit after taking the tykerb. I also have nausea each day as you do. It is intermittent, so I can eat at times--but nothing ever sounds good. I tried sipping gingerale yesterday and I think it helped me with the nausea. Meds for nausea have not helped much except the ones that make me very sleepy. Yes, your onc will probaby up the dose of Tykerb as you tolerate it. Hope you do better this time on it. Very good news that Brenda has done so well on T/X--hope we do too.
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10-18-2007, 04:18 PM
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#3
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Senior Member
Join Date: Mar 2006
Posts: 87
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Because of side effects, I dropped down to 4 Tykerb and no Xeloda. That has worked well for me. I tried to go back to 5 Tykerb and couldn't handle it.
Good luck and I'm sure you'll find a combo that works for you.
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10-19-2007, 12:16 PM
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#4
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Member
Join Date: Oct 2007
Location: Louisiana
Posts: 12
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I just started tx myself so im not much help either I was doing great till yesterday then the nausea came im taking zofran it seems to help.
Good Luck
__________________
Dx Feb o6 idc
2+ nodes er-/pr- her2++
8 rounds a/c w 4 rounds of taxotere every other week
lumpectomy w node disection
rads 32 days
Aug 06 clean pet
Herceptin every 3 wks
Feb 07 clean pet
Aug 07 pet shows micro in lung and 1 pos node
Oct 07 Tykerb & Xeloda
Dec. 07 Pet scan node was 1.8 now .08 and no change in lung. after 3 cycles
Feb. 08 Pet Shows no change in lung nodule lymph node grew 1.8 and second node pos.
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10-19-2007, 03:23 PM
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#5
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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I have no personal experience with a lower dose, but have seen info somewhere that a lower dose may be just as effective. I do a lot of research on any treatment that I am on - and I just don't know where I saw it. If that low a dose works, be happy. :-)
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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10-30-2007, 07:45 PM
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#6
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Senior Member
Join Date: Oct 2005
Location: Sydney Australia
Posts: 105
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T/X side effects
Hi Sally, I hadn't seen your post when I posted requesting advice re doses. Glad to hear that there is someone out there also experimenting with doses. I am off it for a week, then 3 Tykerb + Xeloda. I see my onc to start back on the meds on Monday. I think I will suggest staying off Xeloda for another week and just battle with Tykerb in a reduced form for a week. It makes sense to go slowly when your system has been beaten black and blue.
Regards, Roz
__________________
diagnosed June 03. Rt sided Inflammatory BC in rt lower quadrant. 7cm tumour. Also 3 DCIS. 3 rounds of EC, mastectomy with axillary clearance (12 nodes+ of 19). 1 more EC. 5 weeks of rads, with weekly booster to attack skin lymph involvement. 4 cycles of Taxol. Tamoxifen.Recurrence December 04, Herceptin started early Jan05,+ Arimidex.
NED 26 mths. Recurrence early Mar07. Taxol added to Herceptin. NED. Will have total of 6 cycles, then Aromisan and Herceptin. Early Oct 07, recurrence to the pesky right upper lobe, with some pleural thickening upper rt hemithorax. T/X now the treatment. May 2008, Taxatere and Herceptin for lung recurrence
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10-30-2007, 08:30 PM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I haven't heard of that type of ramp up, but I like that your doc is being creative to slowly give your body a chance to get used to it.
I started Xeloda for 10 days before I got the Tykerb in the mail and started it... I think that may have helped me tolerate the regimine at the start! :~)
__________________
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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10-30-2007, 08:56 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Esther, who posts as "luv2ski", got whalloped with the Tykerb side effects when she began it. She pulled way back on the dosage then worked back up. She was a naughty girl and did it on her own without asking her doctor (she's an independent gal!) but has done quite well. So it's definitely worth a try!
Good luck
Chris
__________________
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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