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Old 07-23-2014, 11:21 AM   #1
Mtngrl
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Location: Denver, CO
Posts: 1,420
Kadcyla Side Effects

If I were an administrator I'd make this a sticky, or start a new "department."

I was on Kadcyla for nearly 10 months, from May, 2013 to February 2014. Fairly early, I developed some breathing problems, and the lung inflammation that I had first noticed while on Herceptin and Tykerb got worse. I looked up the side effects online and noted that interstitial lung disease, pneumonitis and acute respiratory distress are listed. We lowered my dose.

From the beginning, liver enzymes were elevated and platelet count was decreased. My other side effects were high blood pressure, neuropathy, headache, nausea and watery eyes/runny nose (which I've had the whole time I've been on Herceptin or Kadcyla.) My ejection fraction was not negatively affected.

I've been off Kadcyla for five months. Liver enzymes are still elevated and platelet count is still on the low side. I still have lung inflammation, though my symptoms have improved. The neuropathy is almost all cleared up. My blood pressure is back to normal.

How about other people who've been on Kadcyla? How was it for you?
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb

Last edited by Mtngrl; 07-23-2014 at 12:30 PM.. Reason: I remembered another side effect (high blood pressure)
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Old 07-23-2014, 06:13 PM   #2
Kathy T
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Re: Kadcyla Side Effects

Amy, I received TDM 1 for 4 1/2 years. My liver enzymes were elevated and platelets low. I also developed nodular regenerative hyperplasia in the liver, subsequent portal hypertension resulting in ruptured esophageal varices, a very frightening and dangerous situation. I stopped Kadcyla 7 months ago, but the enzymes remain somewhat elevated and platelets low. It was a wonderful effective drug, but now without problems!
Kathy T
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Old 07-23-2014, 07:06 PM   #3
Ceesun
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Cool Re: Kadcyla Side Effects

In a word....tough....Cathy P.S. Mountain Girl, I am Armenian, too!
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Old 07-23-2014, 10:45 PM   #4
Mtngrl
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Re: Kadcyla Side Effects

Oh, Ceesun/Cathy, how did you know I'm Armenian (kind of)? My mother's father was from Armenia. They came over before 1915, but had to hide from the Turks to get out.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 07-23-2014, 11:03 PM   #5
Saygoon
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Location: Hot Springs, South Dakota
Posts: 158
Re: Kadcyla Side Effects

I've been on TDM1 for only about four months now but no s/e at all. Guess we all react to drugs differently. 4 of the 5 met on my spine are gone, rib mets gone and pelvic mets shrinking. It has been a wonderful drug for me but......thanks for the warning I will keep an eye on the s/e's that you mentioned
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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Old 07-24-2014, 08:08 AM   #6
Mtngrl
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Location: Denver, CO
Posts: 1,420
Re: Kadcyla Side Effects

Saygoon--

So glad it's working so well for you! It is a wonder drug for some. I'm very glad it's available.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 07-25-2014, 02:51 AM   #7
michka
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Location: Paris, France
Posts: 858
Re: Kadcyla Side Effects

Hi Amy. There is an old thread started by Waterdreamer called "TDM1 side effects". There may be more toxic effects reported now such as lung inflammation or nodular regenerative hyperplasia since more women are on Kadcyla and for long periods. Take care. Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 08-13-2014, 12:01 PM   #8
Mtngrl
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Join Date: May 2011
Location: Denver, CO
Posts: 1,420
Re: Kadcyla Side Effects

Thanks, Michka. That was informative (and a trip down memory lane. Some beloved friends who are no longer with us posted in it.)
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 03-05-2015, 06:38 AM   #9
waterview99
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Join Date: Mar 2015
Posts: 1
Re: Kadcyla Side Effects

I am on TDM1, this is my 4th round coming up -- I have had arm and leg aches and intense pain in my hands 10 days after my third round, which is weird. Tingling yes, in feet and hands recently. Anyone else going through this? Any remedies?
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Old 03-05-2015, 09:34 AM   #10
Barbara H.
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Join Date: Sep 2005
Location: Newton, MA
Posts: 951
Re: Kadcyla Side Effects

I believe that I was the first member on this website to go on the TDM-1 trial in Sept. 2007. At that time it was called Phase 1, open does escalation study of the safety and pharmacokinetics of Trastuzumab-MCC-DM!. I was originally diagnosed stage IIB or IIIA PR- in May of 1998. I did not know that I was Her2 at the time. I received AC and T and then radiation. My cancer returned in May of 2004 with a 3cm tumor to the prefrontal cortex with cancer in too many places to list. After surgery I went on Herceptin. I was NED for about a year and a half. At that point I added Navalbine. I did not care for it. By this point the cancer had spread to my bones and I eventually had hip pain. In winter of 2007 I applied for the TDM-1 trial, but I failed the Muga test. Unfortunately, later I found out that the machine was at fault. As a result, I went off all treatment hoping that I could get into another trial. Unfortunately, the HER-2 cancer in the bone continued to grow and I was in quite a bit of pain. Fortunately, the trial opened in September. It was a truly a miracle drug for me. Within two weeks I was pain free. Unfortunately, I also developed the same lung disease as you and had to go off of it after about two years. My liver tests eventually returned to normal. I also had nose bleeds and my nose ran more than usual.

I was at the Dana Farer for the entire day on my first infusion. I had chills and felt as if I had the flu after my first infusion. The problem was that I was teaching 3rd grade at the time and had to attend "Back to School Night". I had to give a speech and be with the parents for about two hours. I rested at home for about an hour. The nurses were horrified that I was going, because it was a new stage I trial and they did not know what my reaction might be.

I have been on Herceptin and Tyberb(4 tablets) since 2009 and remain in remission. I do have neuropathy, which I believe is mild. It seems to be increasing and I will probably mention it at my next appointment. I continued to teach during all of my treatments, but am now enjoying retirement since June of last year.

Best,
Barbara H.
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Old 03-05-2015, 10:25 AM   #11
KeriK
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Join Date: Jan 2014
Location: Las Vegas
Posts: 26
Re: Kadcyla Side Effects

I have been on Kadcyla for over 2 yrs now, NED for around a year! It has been a blessing for me.
The first 3 rounds were tough, flu like symptoms and a lot of pain. But it did get easier for me I do have neuropathy off and on. I take vit B6 and L-Cartine for it. If I run out and forget to pick more up, the tingly seems to come back. So I think the vitamins really help
Yesterday my tumor markers have increased, tripled since last time!!
Dr will retest in 6 wks. I really hope this is not the end of kadcyla for me. I'm still working and living a pretty "normal" life and worry that may all come to an end soon
__________________
[/SIGPIC]37 years old
12/10 her 2+, ER+ invasive ductile carc stage 3C
1/11 taxol herc 12 wks
4/11 FEC herc 12 wks
8/11 masectomy 48 lymph nodes removed
9/11 tamoxifen
10/11 radiation thru Dec
11/12 recon!
12/12. It's back. :( mets to liver and lungs
Stopped tamoxifen
1/13 TDM1 expansion trial
4/13 lung mets gone 65% reduction in liver markers in low teens!
12/13 lungs still clear! Liver mets reduction
12/13 opherectomy
1/14. Tumor markers increasing. 30's now
2/14 TMs back in high teens
4/14 increased calcium levels
5/14 Xgeva to kadcyla. Scan showed tiny scar tissue on sternum, not previously ever seen
8/14 NED
12/14 NED!!
4/15. NED. YAY! Dr thinking about stopping kadcyla
7/15 still NED. LAST KADCYLA SCHEDULED FOR 9/3
8/15 left side of tongue and lips went numb, brain MRI revealed 10 lesions all over the brain. :(
8/15. Tumor markers still in high teens ???
8/15. 15 rounds of Whole Brain Radiation
Started an Alzheimer's medicine, Namenda, to help preserve brain cognition.
9/15 started Afinator and Tykerb
10/15. Brain MRI. 7 rumors left, nothing new, nothing growing
12/15. 3 sessions of cyber knife
3/16 MRI stable. Nothing new nothing growing nothing shrinking
5/16. MRI. 4 existing tumors doubled in size and 2 new tumor
Looking into clinical trials
6/16. 6 2 hr sessions of cyber knife
10/16 stable MRI
11/16 back in the body.......lungs liver lymph nodes sternum
11/16 abraxane herceptin xgeva
12/16 lungs clear but now 2 tumor in liver
2/17 Opdivo ibrance Tykerb xgeva
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Old 03-12-2015, 08:00 AM   #12
Mtngrl
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Join Date: May 2011
Location: Denver, CO
Posts: 1,420
Re: Kadcyla Side Effects

Finally, a year after I went off Kadcyla, my liver enzymes are back in the normal range and my platelets are only a little low.

I take L-Glutamine for neuropathy.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 03-13-2015, 11:39 PM   #13
Rupali
Senior Member
 
Join Date: Dec 2005
Posts: 148
Re: Kadcyla Side Effects

I have done 6 cycles of TDM1 and got very good response. My doc says that the cancer is almost gone. It was extensive in bones, lung, liver and brain. I am planning to continue for another 6 cycles at 3-4 weeks interval and then go on for a 6-8 weeks interval if everything stays ok, I wish so much it stays ok.
Anyone has tried this kind of protocol
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Old 03-14-2015, 07:12 AM   #14
karina14
Member
 
Join Date: Mar 2013
Location: Toronto, Canada
Posts: 23
Re: Kadcyla Side Effects

I have just started Kadcyla (changing from Herceptin+Perjeta which stopped working on my lungs) and so far no side effects other than mild constipation. Compared with other chemos this looks like a walk in the park. I am hoping TDM1 is the drug for me, otherwise the lymphangitic spread from the lungs will stop my fight early, although I am in good shape at this time.
__________________
2011/03 - dx IDC (15 weeks pregnant), Rx mastectomy, 1.5 cm, stage 1B, grade 3, ER-/PR-/HER2+, 1/20
2011/04 - started 3xFEC while pregnant (2 sessions)
2011/06 - daughter born healthy @36 weeks
2011/08 - 3xTaxotere & Herceptin, followed by 1 year of Herceptin, no rads
2013/09 - mets to liver, bones & lungs, started weekly Taxotere + Herceptin
2013/10 - stopped Taxotere after 4 weeks due to severe side effects, stay on weekly Herceptin, pleurodesis to right lung (previously 2 x thoracentesis)
2014/01 - Dec CT scan shows good liver response but progression to bones, Pamidronate plus Herceptin only
2014/01 - brain & spine MRI (symptomatic) shows very large number of mets in the brain, do urgent WBR (20Gy/5 fractions)

2014/02 - Herceptin, Perjeta, Abraxane, XGeva
2014/08 - stopped Abraxane, stayed on Herceptin, Perjeta, XGeva
2014/12 - brain mets progression, second round of WBR (25Gy/10 fractions), lungs stable, light activity in liver
2015/02 - progression in lungs (lymphangitic carcinomatosis), stop Herceptin / Perjeta, start TDM1
2015/07 - stable on the extra cranial disease (lungs, abdomen)
2015/07- brain MRI show tumors went to the leptomeningeal area and also new one started to grow deep brain, still on TDM1, not sure of next step ....
2015/08 - looking for help to get IT Herceptin in Canada






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Old 03-29-2015, 07:35 AM   #15
vqtilley
Member
 
Join Date: Mar 2015
Posts: 12
Re: Kadcyla Side Effects

Hi, all - my first post on this wonderful forum! I just started Kadcyla on Friday, waiting for side effects. Very curious about Rupali's experience of brain met/s disappearing - I thought Kadcyla didn't cross the BBB? Very good news if it does! I had a cerebellum lesion resected in January and have some faint evidence of leptomeningeal disease on MRI although it's not clear yet, so I'm worried my cancer has free rein in my CNS if I'm just on Kadcyla. Any details on this? Thanks! Will check other threads about milk thistle, etc.
__________________
Feb 2012: diagnosed with 1 cm lesion rt breast, DCIS left breast, Stage IV ER+/HER2+
Apr 2012: bilateral partial excisions; confirmed met to left proximal femur, long gamma nail inserted to stabilize femur:
May 2012: radiation to femur: chemo with Trastuzumab + taxane.
July 2012 thru Mar 2015: started maintenance regime Herceptin+Arimidex+Denosumab, NED
May 2014: recurrence in right acetabulum: 15 fractions radiation
Jan 2015: lesion in left cerebellum: resection & gamma knife treatment
Mar 2015: small mets confirmed in rt axilla, rt breast, T7 vertebra, possible met as isolated spiculated pulmonary nodule left lung
27 Mar 2015: start Kadcyla, discontinuing aromotase inhibitors; within two weeks axilla/rt breast lesions are shrinking noticeably
18 April: resume letrozole
May: all lesions disappeared or dormant
May, Aug, & Nov 2015: every 3 month MRI follow-up brain/spinal scans: all negative for CNS disease
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Old 04-03-2015, 11:01 PM   #16
linn65
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Join Date: Dec 2012
Location: Attica, IN
Posts: 371
Re: Kadcyla Side Effects

I wondered the exact same thing about tdm1 passing the blood brain barrier. And so happy it does....right ??
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 04-04-2015, 05:27 AM   #17
vqtilley
Member
 
Join Date: Mar 2015
Posts: 12
Re: Kadcyla Side Effects

I asked my med onc and he said transfer across the BBB is variable and not fully understood, so even though Kadcyla is a large molecule that normally doesn't pass through that doesn't mean none is. Radiation to the brain or brain surgery, which I've had, can make the BBB more permeable, for example. But I'm still not feeling too secure about this on Kadcyla. Platelets have plunged to 50,000 on day 7, btw.
__________________
Feb 2012: diagnosed with 1 cm lesion rt breast, DCIS left breast, Stage IV ER+/HER2+
Apr 2012: bilateral partial excisions; confirmed met to left proximal femur, long gamma nail inserted to stabilize femur:
May 2012: radiation to femur: chemo with Trastuzumab + taxane.
July 2012 thru Mar 2015: started maintenance regime Herceptin+Arimidex+Denosumab, NED
May 2014: recurrence in right acetabulum: 15 fractions radiation
Jan 2015: lesion in left cerebellum: resection & gamma knife treatment
Mar 2015: small mets confirmed in rt axilla, rt breast, T7 vertebra, possible met as isolated spiculated pulmonary nodule left lung
27 Mar 2015: start Kadcyla, discontinuing aromotase inhibitors; within two weeks axilla/rt breast lesions are shrinking noticeably
18 April: resume letrozole
May: all lesions disappeared or dormant
May, Aug, & Nov 2015: every 3 month MRI follow-up brain/spinal scans: all negative for CNS disease
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Old 04-04-2015, 06:54 PM   #18
karina14
Member
 
Join Date: Mar 2013
Location: Toronto, Canada
Posts: 23
Re: Kadcyla Side Effects

There is a recent study od TDM1 and brain mets:
http://www.clinical-breast-cancer.co...14)00223-7/pdf
"Breast cancer brain metastases responding to primary systemic therapy with T-DM1."

Apparently there are few cases where the brain mets have responded to TDM1, but not many. And looks like it crosses BBB because this one is damaged after radiation. This is one of the Clinical Points of the study:
- Ado-trastuzumab emtansine might also cross the BBB but its true level of activity in the CNS is inadequately defined.
__________________
2011/03 - dx IDC (15 weeks pregnant), Rx mastectomy, 1.5 cm, stage 1B, grade 3, ER-/PR-/HER2+, 1/20
2011/04 - started 3xFEC while pregnant (2 sessions)
2011/06 - daughter born healthy @36 weeks
2011/08 - 3xTaxotere & Herceptin, followed by 1 year of Herceptin, no rads
2013/09 - mets to liver, bones & lungs, started weekly Taxotere + Herceptin
2013/10 - stopped Taxotere after 4 weeks due to severe side effects, stay on weekly Herceptin, pleurodesis to right lung (previously 2 x thoracentesis)
2014/01 - Dec CT scan shows good liver response but progression to bones, Pamidronate plus Herceptin only
2014/01 - brain & spine MRI (symptomatic) shows very large number of mets in the brain, do urgent WBR (20Gy/5 fractions)

2014/02 - Herceptin, Perjeta, Abraxane, XGeva
2014/08 - stopped Abraxane, stayed on Herceptin, Perjeta, XGeva
2014/12 - brain mets progression, second round of WBR (25Gy/10 fractions), lungs stable, light activity in liver
2015/02 - progression in lungs (lymphangitic carcinomatosis), stop Herceptin / Perjeta, start TDM1
2015/07 - stable on the extra cranial disease (lungs, abdomen)
2015/07- brain MRI show tumors went to the leptomeningeal area and also new one started to grow deep brain, still on TDM1, not sure of next step ....
2015/08 - looking for help to get IT Herceptin in Canada






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Old 04-04-2015, 07:22 PM   #19
vqtilley
Member
 
Join Date: Mar 2015
Posts: 12
Re: Kadcyla Side Effects

Thanks so much, Karina, I'd be really interested to read the article but the link doesn't work and Google/Google Scholar searches on the title only bring up the abstract with no free full text option. Any tips on where the full text might be available?
__________________
Feb 2012: diagnosed with 1 cm lesion rt breast, DCIS left breast, Stage IV ER+/HER2+
Apr 2012: bilateral partial excisions; confirmed met to left proximal femur, long gamma nail inserted to stabilize femur:
May 2012: radiation to femur: chemo with Trastuzumab + taxane.
July 2012 thru Mar 2015: started maintenance regime Herceptin+Arimidex+Denosumab, NED
May 2014: recurrence in right acetabulum: 15 fractions radiation
Jan 2015: lesion in left cerebellum: resection & gamma knife treatment
Mar 2015: small mets confirmed in rt axilla, rt breast, T7 vertebra, possible met as isolated spiculated pulmonary nodule left lung
27 Mar 2015: start Kadcyla, discontinuing aromotase inhibitors; within two weeks axilla/rt breast lesions are shrinking noticeably
18 April: resume letrozole
May: all lesions disappeared or dormant
May, Aug, & Nov 2015: every 3 month MRI follow-up brain/spinal scans: all negative for CNS disease
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Old 04-06-2015, 09:06 AM   #20
karina14
Member
 
Join Date: Mar 2013
Location: Toronto, Canada
Posts: 23
Re: Kadcyla Side Effects

Hi vqtilley,

In a different thread I have seen instructions how to access pub med docs: http://her2support.org/vbulletin/showthread.php?t=62247

I also found it here, but you need to create an account and request the doc. I don't know how to easily cut & paste the pdf to add it here... If not successful, send me a message.

http://www.researchgate.net/publicat...apy_with_T-DM1
__________________
2011/03 - dx IDC (15 weeks pregnant), Rx mastectomy, 1.5 cm, stage 1B, grade 3, ER-/PR-/HER2+, 1/20
2011/04 - started 3xFEC while pregnant (2 sessions)
2011/06 - daughter born healthy @36 weeks
2011/08 - 3xTaxotere & Herceptin, followed by 1 year of Herceptin, no rads
2013/09 - mets to liver, bones & lungs, started weekly Taxotere + Herceptin
2013/10 - stopped Taxotere after 4 weeks due to severe side effects, stay on weekly Herceptin, pleurodesis to right lung (previously 2 x thoracentesis)
2014/01 - Dec CT scan shows good liver response but progression to bones, Pamidronate plus Herceptin only
2014/01 - brain & spine MRI (symptomatic) shows very large number of mets in the brain, do urgent WBR (20Gy/5 fractions)

2014/02 - Herceptin, Perjeta, Abraxane, XGeva
2014/08 - stopped Abraxane, stayed on Herceptin, Perjeta, XGeva
2014/12 - brain mets progression, second round of WBR (25Gy/10 fractions), lungs stable, light activity in liver
2015/02 - progression in lungs (lymphangitic carcinomatosis), stop Herceptin / Perjeta, start TDM1
2015/07 - stable on the extra cranial disease (lungs, abdomen)
2015/07- brain MRI show tumors went to the leptomeningeal area and also new one started to grow deep brain, still on TDM1, not sure of next step ....
2015/08 - looking for help to get IT Herceptin in Canada






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