| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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05-03-2007, 10:34 AM
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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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I'm in the club
Well, I just got back from a big appt. to receive results from last weeks imaging studies. Brain MRI is clear-thank goodness The pet/ct showed virtually no activity in the little spots in lungs and bones and no change in the liver tumors. The CT with IV contrast did show progression in the liver and some liver "irritation" as a result. My onc consulted with a radiologist who specializes in cancer and they compared the last 3 CT's together.
WE decided to quit Navelbine and Herceptin and switch to the trendy new treatment complete with all the diarrhea fun...tykerb/xeloda.
I will start early next week. I have been on xeloda before but with taxotere for nine months and initially the diarrhea was horrible and the hand/foot thing became a show and tell item at the center one day-the worst case they'd ever seen. I had really toughed it out though. To the point of being stupid before I complained. They reduced my dose by half and things were better.
I talked with her about that experience and she was willing to start on 1500 vs 3000/day for 14 days at a time. She did mention that taxotere can interfere with xeloda's clearance and that maybe that was why the situation was so bad. I remember thinking just how sexy I was to have wisps of manky hair on my head, watery diarrhea ALL DAY, a heavy period for 2weeks all at the same time. I was such a catch.
Anyway, I will start at 3000mg's of xeloda per day plus the standard 1250 of tykerb, which i'm going to try in the evening first.
In the past I found that B6 did make a difference for the hand/foot deal and that very natural lotions containing calendula helped with my hands. I did not use any anti-diarrheals last time, my doc at the time seemed clueless about the diarrhea. But I plan on getting the immodium and whooping up on that as needed this time. It will all balance out the last year of constipation I guess.
Xeloda was very effective for my liver mets last time and honestly I'm excited to beat the crap out of them again. My gut tells me that I will be a good responder to the Tykerb too. So providing we manage it all well, I will trudge on!!!
So, ladies, we are all in this together and I'm holding us all in a warm nurturing, but feisty place with this.
__________________
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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05-03-2007, 11:09 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Joy
Oh goody, I've always wanted to be in a club with you - you are my idol. Sounds like you had mostly good news - maybe even better than you expected. I know you can beat the crap out of the liver progression!
On the tykerb/diarrhea (I just learned how to spell that word, by the way), I'm not on Xeloda - so I don't know how much of that "problem" is due to that vs. the Tykerb. I do know that I have been on it for a little over one week and have only had what I would describe as "a little loose". (TMI?  ) I've felt so left out of the crowd that I have been experimenting to see if I could do a little bit better...um worse...
What I've found is that it seems to be relate to how long the drug is in my stomach ALONE. The instructions say empty stomach, 1 hour after and before eating. I've been taking it in the morning, so on a completely empty stomach and have found that the longer I wait before eating, the greater the problem. I've done my oh-so-scientific testing by moving the time earlier and earlier in the am. So now I'm practically sleepwalking to slug those puppies down!
On the other hand, it could just be that my body has SO FAR tolerated it and it will all go to crap (so to speak) the longer I'm on it! Or maybe it's that I'm also on Avastin which can cause constipation so it all evens out!
The really exciting news is today I think I have some pimples on my nose - wahoo!
]
Joy, I also have a feeling that you will respond well to this drug. And just think, if it blasted your liver mets before it will send them into oblivion with this extra kicker!
Keep us posted!
Much love
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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05-03-2007, 11:10 AM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Welcome to the club, Joy. I loved your post. It is so heartwarming and helpful that we are able to approach this with humor!
__________________
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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05-03-2007, 11:19 AM
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#4
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Joy - welcome to the Diarrhea Divas club! I'm sure this combo will do great things for you and maybe zap those liver mets completely away! I got such a chuckle from your post - best of luck with the new combo - keep us posted as to how it goes for you.
__________________
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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05-03-2007, 11:23 AM
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#5
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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"Warm, nurturing, and feisty"! I love it!
I'm glad you're being pro-active on the liver progression, that's our girl. Don't give this stuff an inch of wiggle room!
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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05-03-2007, 11:37 AM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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You got that right Lolly! No wiggle room!!
Hey Andi - how are you feeling today? I just took my first 3 Xeloda about 20 minutes ago and so far I haven't spontaneously combusted. LOL - Although, I thought I needed a Xanax first. I did take a Zofran, first, as a preventative - (Zofran ODT, the one that dissolves "On Da Tongue" as my infusion nurses say, haha). I ended up putting it off as long as I could. I waited until lunch instead of breakfast. Now I will have to eat a late dinner. Oh well. My heart is fluttering a little with apprehension, but that should go away soon, I hope. And Tykerb starts sometime after it arrives in the mail... could be tomorrow!
I love "Diarrhea Divas" by the way! hahahahaha
__________________
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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05-03-2007, 12:23 PM
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#7
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Brenda - I'm getting along ok with the Xeloda, I didn't have the bowel problems during the day. I'm thinking they are coming from the Tykerb since I took that as my last med last night and my bathroom problems were first thing this morning, but I'm not so sure it is the meds because my husband had the same problem last night at bedtime and he's not on the t/x. I took my morning dose around 10 am today and have not had any problems since. I am really tired since I started on this. I keep looking for those pimples and rashes - if that is an indicator this stuff is working!!
__________________
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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05-04-2007, 12:42 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Joy, good luck with your new treatment, I hope it is truly effective for you. There seems to be a growing number of members of the Tykerb brigade.
May we all have great results and few side effects!!!
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05-08-2007, 08:57 AM
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#9
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Joy,
I just found this update. It sounds like most of your news was good and that you are being proactive with the results in hand. It also sounds like you have your warrior gear on and that you are ready to kick some cancer butt!
I found out today that I have progression in the spine...all else is good and in check....but guess what??? taaah daaah - I am joining the Tykerb Tigers Club too! I am hoping to avoid the Diarrhea...a girl can dream can't she?
I am sending prayers and warm wishes your way.
Love, Hope, and Peace,
Carolyns
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