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06-12-2008, 01:18 AM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 589
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T-DM1 - need advice
Hi all,
Caryn continues to have a very hard time with side effects on this weekly trial. The worst is the cysts that the drug seems to be causing in her eyes. She has become incredibly sensitive to light and is now wearing sunglasses day and night. She's seeing a cornea specialist who is trying to keep it from getting worse but we're all nervous about any permanent damage and the impact this is now having on Caryn. As a result of me asking the Dr at Sloan to reduce the dosage or frequency, she's contacted Genentech who has stopped Caryn's treatment until they see improvement in her eyes. The drug was kicking the cancers butt but I'm now very concerned about the non activity as she's now had only 1 treatment in the last 4 weeks. This seems to be a great drug and don't want to stop it but also don't want to sit idly while the cancer builds up.
I welcome thoughts and suggestions.
Eric
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06-12-2008, 04:10 AM
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#2
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Eric,
I can't offer you any advice for Caryn but I know somebody here will be able too.
I am only posting to offer my love and prayers to you both. I can only imagine how tough this must be but the good news is that this trial is "kicking cancers butt!!!!" I will pray that Caryn's side effects can be managed and that she can get back on the drugs soon.
Love to you and know that my prayers surround you both.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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06-12-2008, 05:01 AM
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#3
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Senior Member
Join Date: Sep 2005
Posts: 589
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Thank you Marejo.
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06-12-2008, 08:03 AM
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#4
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Senior Member
Join Date: Nov 2007
Posts: 210
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is caryn on the 2.4 every week... maybe they can skip doses to control the cysts...
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06-12-2008, 09:11 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Hi Eric,
Wow, that's a very tough situation. I know you want to fight for the drug because it is beating the cancer...while at the same time, Caryn is really struggling with this debilitating side effect. It sounds like its a major QOL issue.
As you know, Herceptin stays in the system for some time so this is likely also the case with T-DM1. They say the drug clears quickly but this is not always true. So although I know you must be imagining rampant progression in the absence of treatment, this may not be the case.
Of course, Genentech is going to be very very careful about serious adverse effects and this is why they are withholding treatments. I wonder, is feeling that YOU are not able to make the decision making it worse? I know I just about flipped out when I thought I was about to be kicked out of my trial.
It seems that all you can do is wait, hope and pray that Caryn's situation gets better soon and she can resume treatment. And make sure your doctor knows you want to continue in the trial as soon as possible, because as I learned your desire to continue does make a difference.
Hang in there my friends
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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06-12-2008, 09:52 AM
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#6
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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What a difficult position to be in. As I read this earlier, I stopped to ask myself what I would do were I in yours and Caryn's situation. I don't think I could make the decision alone. I'd probably have to talk to several doctors & nurses and pray my heart out. It's so hard. I'll just pray that one far wiser than I am will figure out how to protect Caryn's eyes and still reap the benefit of the trial drugs. Much love and luck, 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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06-12-2008, 10:52 AM
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#7
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Senior Member
Join Date: Sep 2005
Posts: 556
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Eric,
You and Caryn are in my thoughts. Probably reducing the dose might solve the eye issue.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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06-12-2008, 12:52 PM
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#8
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Eric,
I pray this gets resolved soon and Caryn is back on treatment kicking cancers butt! All my prayers and thoughts are with you both.
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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06-12-2008, 04:50 PM
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#9
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Eric, my thoughts and prayers are with you and Caryn. Like Chrisy said, your desire to continue the treatment does make a difference.
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06-12-2008, 07:09 PM
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#10
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Senior Member
Join Date: Sep 2005
Posts: 589
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Thanks all. Chrissy, after reading your post I emailed Caryn's doc reaffirming her commitment for staying on this drug. Good info.
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06-12-2008, 07:16 PM
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#11
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Eric,
It seems that Caryn is being monitored very closely and I hope and pray that her eyes clear up and improve.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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06-12-2008, 07:31 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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thinking of you!!!
Hi Eric,
You are in a tough situation because this drug is getting amazing results. You could consider contacting Dr. Krop at the Dana Farber. He is in charge of the trials and has patients who have been on the first trial for over a year. Nevertheless, there have been very few patients on this trial to know and understand all of the side effects.
Thinking of you and Caryn,
Barbara H.
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06-12-2008, 08:46 PM
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#13
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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My thoughts and prayers are with you on this. Hope everything clears up soon.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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