| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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05-08-2007, 01:50 PM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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crackin' myself up
I have been excavating kids' rooms and cleaning as my parents are arriving for a visit tomorrow (I'm so excited). I was in my bathroom thinking about what needed to be done and as I await my T-X shipment I had a thought that I should really take the time to make my bathroom extra beautiful since I may be in there all the time. I also thought I should start collecting my friends' magazines as they finish them so I have entertainment. Then I thought maybe I should put on an addition for a library.
I went for chemo education today with a fun NP at the center. She gave me some Xeloda drug company schwag. I always laugh at the color printed information with the drawings of side effects (I do understand why they need to be there). But the profile of the woman on the toilet (with her dress over her bottom) really cracks me up. As does the one of the same unfortunate gal leaning over the toilet. I thought maybe I should use that like a door placard in a hotel. I can put it on my front door when I'm experiencing these things and then at least people know where to find me.
Aw well at least it is interesting, huh?
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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05-08-2007, 02:38 PM
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#2
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Member
Join Date: Mar 2007
Location: Indpls, IN
Posts: 12
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thats so funny!
Joy, I laughed out loud at your post. I just got home from my doctors office where we discussed T-X. I got that same literature and immediately noticed the pictures of the woman on the toilet. I'm not sure when my pills will arrive. My nurse was calling my insurance company to get it arranged. I sure hope I don't become that lady in the picture. My nurse stressed to take all 5 Tykerb pills at the same time to decrease the side effects and they gave me Vit. B-6 and Udder Cream lotion to use for the Xeloda side effects.
Hope it all goes well for you!
__________________
Jean B
Inflammatory Breast Cancer 2003
A/C Taxol dose dense regimen
6 weeks radiation
1 year Herceptin
NED for 2 years and 4 months
Recurrence in July 2006 with extensive liver mets over 70%, tumor obstructing bile duct-gallbladder, mets to spine and pelvis, abdominal lymph nodes enlarged, mass on pancreas.
Hospice called in until Gemzar and Herceptin started in Aug. 2006
May 2007 pet scan shows only 1 liver lesion 1.1 cm. bone mets gone, no enlarged lymph nodes.
June 2007-Switch to Tykerb/Xeloda because markers increased
Sept 2007-tumor marker 357-2.4 cm mass on pancreas,1 cm lesion on thyroid, duodenum and more liver mets.--switch to abraxane/carboplatin/herceptin and doing much better
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05-08-2007, 02:56 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Omigosh! I'm Probably Doing It Wrong!
I didn't get any schwag or company literature - probably cuz I'm on it in a clinical trial and they still think it's experimental!
I'm probably doing it all wrong as I have no pictures to guide me.
Or, worse yet, I'm not actually having to spend much extra time in the toidy - so Joy, don't start construction on that addition yet, you may not need it!
__________________
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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05-08-2007, 05:50 PM
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#4
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Joy - you crack me up! I just got home from the clinic (had to pick up more Xeloda samples as there is monumental foot dragging on the part of Roche in sending it to me, as well as on the part of GSK in sending Tykerb to me as well... should now get both hopefully on Thurs in the mail), anyhoo, while I was there the clinic pharmacist and my nurse advocate gave me my purple Tykerb purse! Anyone else gotten theirs yet? It's cute, if you really like purple...it'll be good for make-up or something. I also like the blue and green Xeloda pouch, don't know what to use it for yet. Haven't watched the Xeloda DVD yet either. I guess I should to see what the company spent all of their money on.
So far I don't find anything too absurd or funny in the Tykerb pamphlets, bummer!... sounds like Xeloda takes the cake. I love the idea of turning the graphics into a Do Not Disturb sign for the bathroom!
__________________
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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05-08-2007, 07:43 PM
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#5
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Gosh, I feel really left out, no schwag from the company and definitely no purple purse or blue and green pouch and no DVD. Joy, I laughed so hard when I read your post. I have had a couple of bouts since starting T/X a week ago, but nothing that would require the library. I like the placard idea - kind of a new version of "do not disturb". Have fun with your parents when they get there to visit.
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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05-08-2007, 07:52 PM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I understand that Tykerbcares is supposed to send it to you - but the drug rep left the purple purse for me with the clinic pharmacist yesterday. Maybe they are new this week? And the Xeloda pouch was given to me last week at the clinic when my nurse advocate was helping file the assistance paperwork for both Ty and Xel.
__________________
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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