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04-11-2014, 06:43 PM
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#1
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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It's Not Working! Three Weeks Of Nothing But Side Effects!
Scrap the Temsirolimus and Neratinib! Already!
Three weeks into the game, and enduring the horrible side effects, apparently it is over! CEA started creeping up first week, then by 10 second week, another 10 in third week. At first, my oncologist was willing to put the rise on intestinal inflammation (Immodium/Lomotil are the other "drugs"). But, now with the two big jumps in my ever-accurate marker, CEA, it's over.
She's thinking Doxil. I'd like a kinder, gentler med that will take me down the road. Please, if you can conjure up some thoughts, we'll be making a decision this week. Bear in mind I am HER2+++, high grade, poorly differentiated, somewhat ER/PR positive.
Thanks,
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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04-11-2014, 07:02 PM
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#2
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Hi Karen, no advice but I just wanted you to know I am praying and rooting for you.
Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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04-11-2014, 08:55 PM
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#3
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Senior Member
Join Date: Feb 2014
Posts: 38
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Hi Karen, sorry, I too have no suggestions, but hope you get some good advice. Big hugs xo
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04-12-2014, 12:28 AM
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#4
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Another person with no advice, just good thoughts sent your way
Keep the faith. You always have
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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04-12-2014, 03:56 AM
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#5
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Hi Karen. I am so sorry the new treatment did not work. I was hoping so much that your very personalized approach would be rewarded.
Just trying to think. I know you have neuropathy from Taxol.
However, when I read your profile I see that you had Taxol and Herceptin but not TCH at the start. It worked. Then when you started TDM1 you had it with Taxol again and it worked. I am wondering if it is not the Taxol that worked when you had the Taxol/TDM1/Perjeta combo. Is there a combo where you could add a taxane, maybe Abraxane this time. This may be stupid because I am not an onc. and it may just not be possible because of the Taxol damage.
Your onc is thinking about Doxil. I figure in a combo? Is it your genomic sequencing that lead her to think of it?
I hope some brilliant minds will come in with suggestions. You deserve to find the right weapon. Stay strong. Sending hugs. 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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04-12-2014, 04:41 AM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Karen,
Noticed this line in your signature: Genomic sequencing completed for future treatments, if necessary.
I'm certain your doctor will have a good idea what to do next based on the Genomic sequencing result.
Sending you good vibes.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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04-12-2014, 04:58 AM
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#7
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Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Praying...keep us posted.
:-) Penny
__________________
...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)
Penny
July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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04-12-2014, 05:54 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Karen
You say you are somewhat ER positive. After all these "anti HER2" treatments, maybe you are a lot more positive. Have you tried anything for ER? Maybe adding in something like that will help - maybe even help alot. Maybe its those cells that were the survivors thru all this.
What about Havolen? Just thinking out loud here. But Doxil or AC is also a good choice but you cannot receive Herceptin concurently with those because together the potential heart issues increases.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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04-12-2014, 07:46 AM
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#9
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Senior Member
Join Date: May 2010
Posts: 184
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Thinking about you. Sending you hugs and prayers for a quick solution that works. Wish I had more to give.
Cathy
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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04-12-2014, 08:12 AM
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#10
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Sorry Karen that this is not working for you. My daughter who is also highly her2 and slightly hormone positive as you are, was looking to this new treatment as a possible next step if she would progress.
Right now the PET shows only activity in the supra-clavicle lymph node. She is doing Abraxine weekly now but continues with the every three weeks Herceptin total body treatment and every week Herceptin IT.
My daughter did not want to go to the Abraxine but it has shrunk the node with the last PET showing no activity except in the node.
Hope you find something that works.
Ev
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04-12-2014, 08:35 AM
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#11
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Senior Member
Join Date: May 2012
Location: Bethlehem PA
Posts: 395
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Oh Karen I am so sorry to hear this. Much love and prayers coming your way
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04-12-2014, 09:05 AM
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#12
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Karen, Also I would recommend getting a biopsy to determine if the status of the cancer has changed. My daughter is thinking of getting a biopsy of her lymph node to ascertain if the hormone status has increased or she might be less her2.
The targeted drugs she thought would work for her - such as perjeta and kadcyla did NOT work for her. So maybe things have changed.
Ev
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04-12-2014, 11:22 AM
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#13
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Senior Member
Join Date: Feb 2014
Location: Washington State
Posts: 49
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
I'm a noob so no real advice here other than you are in my prayers.
I do like the biopsy suggestion from ev if you don't have a recent one. My onc loves to biopsy mets.....Good to know thine enemy approach...
Best to you during this transition in treatment.
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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04-12-2014, 03:23 PM
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#14
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Thanks, everyone. I was on Arimidex, Perjeta and Herceptin before the trial.
We have a biopsy from January, pre and post ablation.
There have been changes in the makeup, with some cells strongly HER2 and some not.
Slowly, gathering information, from all of you, and the guidance is appreciated and necessary. BY THE WAY, PLEASE do NOT think the trial will NOT work for YOU (Temsirolimus/Neratinib). I have gotten PMs about this. One of my friends with extensive mets did it for 16 months. It COULD work for you, don't base your decisions on my experience. Go into it believing it IS for you. It has a better response rate than T-DM1 and is similar in that it either works or doesn't.
We have the genomic sequencing and will be discussing further, using that information with the biopsy information.
Thank you for supporting me and sending love and best wishes when I'm trapped in a corner.
Love
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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04-12-2014, 04:07 PM
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#15
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Best wishes Karen. Xxx
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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04-12-2014, 04:35 PM
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#16
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Karen,
I'm very sorry to hear this! STUPID cancer!!!
I noticed that you haven't tried any of the platinum drugs, as in carboplatin. Some oncologists have replaced Adriamycin with Carboplatin, due to A's known potential cardiac toxicity. They use TCH, or taxotere, Carboplatin and Herceptin.
Here's a metastatic HER2+ trial in Italy that's using Carboplatin:
http://clinicaltrials.gov/ct2/show/N...static&rank=74
Here are some other trials for HER2+ advanced bc. Some of them are not in our area, but since you go to MSKCC, you might be able to enroll in them anyway via various arrangement. Also, some of these trials are phase 1, or dose escalation trials. But that's not necessary bad, since H started that way at some point. Also, those trials also look at efficacy, and your onc would be able to give you input. Also, sometimes an onc may use an FDA-approved, even if it was approved for some other cancer or something else. Hence, survivors taking metformin, etc.
Ruxolitinib, which is already FDA approved for myelofibrosis. The trial is at Columbia U Medical Center. They're not yet recruiting, but the drug is already FDA approved. It's just a matter of whether is will work for advanced, HER2 bc.
http://clinicaltrials.gov/ct2/show/N...astatic&rank=3
PD-0332991. This drug made a big splash at ASCO last year based on a trial for solid tumors. The drug is a CDK 4/6 checkpoint inhibitor. The trial includes Kadcyla. U Penn. They are not recruiting yet, but you could find out when they might be. It could be close.
http://clinicaltrials.gov/ct2/show/N...static&rank=99
City of Hope. Paclitaxel albumin-stabilized nanoparticle formulation.
http://clinicaltrials.gov/ct2/show/N...static&rank=44
Entinostat. Some sort of inhibitor. MD Andersen.
http://clinicaltrials.gov/ct2/show/N...static&rank=77
BYL719 with Kadcyla. A kinase inhibitor. Northwestern.
http://clinicaltrials.gov/ct2/show/N...static&rank=79
LJM716. HER3 antibody that is a AKT inhibitor. Mass General.
http://clinicaltrials.gov/ct2/show/N...tatic&rank=100
ONT-380 with capecitabine and/or trastuzumab. Several U.S. locations.
http://clinicaltrials.gov/ct2/show/N...tatic&rank=100
ONT-380 with Kadcyla.
http://www.clinicaltrials.gov/ct2/sh...+Cancer&rank=1
ganetespib (see modi)
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=128
another ganetespib study
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=193
BIBW 2992 (afatinib). Phase 3. This trial is ongoing, but not recruiting. However, the FDA already approved the drug as Gilotrif for the treatment of NSCLC. It's a TKI that I believe addresses EGFR mutations. The drug is put out by Boehringer Ingelheim. We met with them two years ago at SABCS, but they seemed more interested in having us get out the word then wanting input from HER2+ mets survivors!
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=132
Irinotecan. UCSF. I know somebody who's onc is giving her this drug for mets. She's doing pretty well. She's not HER2+.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=152
212 Pb-TCMC-Trastuzumab Radio Immunotherapy. University of Birmingham and UCSD. Mimicking Kadcyla ... sort of.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=203
Agatolimod and Herceptin. Stimulating the immune system. Ohio State U.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=155
Hang in there. You have options!!
Joan
xoxo
__________________
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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04-12-2014, 04:41 PM
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#17
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Karen,
After reviewing your signature I was thinking along the lines that Michka has suggested. Looks like you have missed out on Carboplatin and the Anthracyclines, both of which can kick Her2's butt. Like Michka, I was noting that Taxol appears to have been a friend to you with the exception of the neuropathy. None of the drugs I have suggested are easy, so I really hate throwing them into the ring, but they do work. Haleven is not an easy one either, but has knocked Her2 on its ass as well.
I am praying you find a combo that is perfect for you. I remain so sorry that you are having to deal with this again.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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04-12-2014, 10:33 PM
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#18
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
I too am hoping and praying for you And your family that your drs. come up with the right combo for you. His peace my friend��
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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04-13-2014, 08:23 AM
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#19
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Senior Member
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Sorry to hear your news, Karen. No advice, but love and best wishes from Australia.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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04-13-2014, 09:09 AM
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#20
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Junior Member
Join Date: Mar 2014
Posts: 1
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
Praying for you! ! I too had three months of misery with no results...with Perjeta.. Tumor markers continued to decrease so thought it was working. After third treatment, MRI indicated tumor had continued to grow....now 1/3 larger (size of small lemon in node just above pelvic area) identified last October 2013. Three months of real misery...hair loss and all that goes along with it....Then in February and March...changed regime to Kadcyla infusions... Third infusion next week.... Minimal side affects as Kadcyla kills only the cancer cells....leaves the healthy ones alone. Hair growing back...but feel tired most of the time.
Diagnosed 9 years ago..breast cancer Hr2... reocured five years later with cancer in broken shoulder, sternum, rib in back, lower spine and Adrenal Glands (located top of kidneys). . All stable with Tykerb and Xelota oral chemo for following year. Reocurrence finally identified with very accurate tumor markers. No symptoms ...
Has anyone out there been on Kadcyla?
Praying for good results for you and praying for strength to handle whatever the good Lord sends my way........depression is so difficult to overcome.....
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