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Old 08-04-2012, 10:36 AM   #1
Sheila
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Adding Carboplatin to Perjeta and Herceptin

Tomorrow, I will be getting Carboplatin to my Perjeta and Herceptin as I continue to progress without a chemo, and since I progressed on Taxotere recently, Carbo is the drug of choice, and one of the few I have not had.

It has been a rough week as I am now having a problem using or lifting my left arm due to nerve involvement. The pain has been severe in my neck, arm, shoulder. Imhave spent the past week unable to do much of anything. I was taking Tramadol for the pain with no relief. I am now on Lyrica for the nerve pain and Tylenol with Codiene ever 4 hours for pain. This is the first time I truly feel like a cancer Patient in ten years....the pain and inability to do things has really been a rude awakening. I will start the new regimen Monday...praying I get a response. I will say the Lyrica is making the nerve pain more bearable. trying to remain strong and positive....I am getting so much beauty sleep I should look 10 years younger.
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 08-04-2012, 10:57 AM   #2
rhondalea
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Re: Adding Carboplatin to Perjeta and Herceptin

I am so sorry that you're in pain. I've never had any luck with Tramadol, and Tylenol 3 isn't much better. Like tamoxifen, they are metabolized by CYP2D6 (for which I am an intermediate metabolizer, and it may be that you are too). I'm glad the Lyrica is helping, but I hope your doctor can find a better pain reliever for you.

Of course, what I really hope is that the addition of carboplatin will kick the cancer into oblivion so you don't need any pain medicine at all.
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3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
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5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
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12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
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Old 08-04-2012, 01:31 PM   #3
Jackie07
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Re: Adding Carboplatin to Perjeta and Herceptin

Sheila,

The abstract below sounds very encouraging:

Anticancer Agents Med Chem. 2012 May 2. [Epub ahead of print]
Platinum Compounds: A Hope for Future Cancer Chemotherapy.

Ali I, Wani WA, Saleem K, Haque A.
Source

Department of Chemistry, Jamia Millia Islamia (Central University), New Delhi-110025, INDIA. drimran_ali@yahoo.com.

Abstract

The discovery of cis-platin and its second and third generation analogues created a hope in cancer chemotherapy. Cis-platin and its second generation analogue carboplatin have been used for the treatment of some cancers. The third generation analogues have superior anti-cancer profiles for curing a few cancers.

Unfortunately, certain side effects such as renal impairment, neurotoxicity and ototoxicity etc. are associated with these drugs. But, combination therapy makes these analogues more effective with fewer side effects. In addition, the results of some ongoing clinical trials will make the safety profile clear in near future.

The present article describes the current status of cis-platin and its analogues in cancer chemotherapy. The special emphasis has been made on cis-platin discovery, development of second (carboplatin, oxaliplatin, nedaplatin) and third (lobaplatin, heptalatin) generation analogues, comparison of their chemotherapies, mechanism of action, therapeutic status, recent developments and chronology.

Moreover, attempts have been made to describe the future perspectives of these drugs in the cancer treatment.
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Old 08-04-2012, 02:09 PM   #4
chrisy
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Re: Adding Carboplatin to Perjeta and Herceptin

Sheila,
Sorry you are having such a rough time. Carboplatin is a good chemo, I had it with taxol/herceptin in 2004. I hope it will be a rude shock to that cancer!

Hang in there my friend.
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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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Old 08-04-2012, 02:30 PM   #5
KDR
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Re: Adding Carboplatin to Perjeta and Herceptin

Sheila,
Wishing that this new addition will get you into optimum shape and that you are back to yourself soonest.
Warmly,
Karen
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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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Old 08-04-2012, 02:37 PM   #6
Andrea Barnett Budin
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Re: Adding Carboplatin to Perjeta and Herceptin

Dear Sheila,

You are a shero for sure. Your avatar reads like a novel. But you are so strong and brave and determined, I always think of you in uber laudatory terms! Plus through it allllllllllllllllllll -- you have that quick sense of humor that never fails to make me smile. Thank you for all you do and give of yourself, my Sister!

My husband is having major nerve pain (from his eye to his thigh) and they have him on Neurontin (Gabapentin). He takes 300 mg and it is mildly helping. He can't really handle a higher dosage, but it is a drug that can be given up to 1800 mg. You might be a good candidate for that. I pray you get some relief. Please ask your doctor.

I am over here in your corner, rooting for you and sending you loving, healing energy, my Friend!

Big gentle hugs,

Andi
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 08-04-2012, 09:19 PM   #7
NEDenise
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Re: Adding Carboplatin to Perjeta and Herceptin

Sheila,
I'm so sorry you are in so much pain! I'll be praying extra fervently that the docs have come up with just the right combo to kick this cancer's ass!

I saw in Andi's post that she mentioned Neurontin. I took that for neuropathy, and my mom took it for nerve pain in her legs when her cancer started to effect her legs. Neither one of us had any side effects...but it did help with the pain. Maybe something to hold in reserve...in case Lyrica needs some help.

Hoping to read about your pain relief soon...and a return to the wonderful, beautiful, happy Sheila we all love so much!

Denise
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2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
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6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
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7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
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Old 08-04-2012, 10:09 PM   #8
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Wink Re: Adding Carboplatin to Perjeta and Herceptin

I am so sorry about the pain.
I hope the addition of Carboplatin will help.
Hang in there Sheila. Please know we are all thinking of you and hoping you are feeling better soon.
Special vibes are coming to you from the middle of the Pacific Ocean. I have my fingers crossed for you as I type. Hopefully I am not making mistakes by doing that.
It would be nice if you can read this post.
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Old 08-05-2012, 04:24 AM   #9
Redwolf8812
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Re: Adding Carboplatin to Perjeta and Herceptin

Sheila, I'm on carboplatin also. The oncologist put me on Vitamin B6 for neuropathy and it made a world of difference.

Prayer going up for you.

- Penny
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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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Old 08-05-2012, 09:11 AM   #10
Mary Anne in TX
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Re: Adding Carboplatin to Perjeta and Herceptin

Hi Sheila! the carboplatin surely worked for me. It's what finally started the tumor marker numbers to really go down. Cheering for you every day!
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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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Old 08-05-2012, 11:06 AM   #11
Paty
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Re: Adding Carboplatin to Perjeta and Herceptin

Sheila,

Tinking of you and sending you good wishes with the new drug. I am so sorry you are not feeling that well, but there has to be a drug for that pain. Love you Sheila, you are my hero!! Hugs, hugs, hugs!

Paty
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Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 08-16-2012, 05:03 AM   #12
NEDenise
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Re: Adding Carboplatin to Perjeta and Herceptin

Hi Sheila,
Thinking of you this morning and sending tons of prayers, love and positive, healing energy your way!

Close your eyes, my friend, and feel it all wash over you!
Love,
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 08-16-2012, 07:16 AM   #13
Mtngrl
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Re: Adding Carboplatin to Perjeta and Herceptin

Dear Sheila,

So sorry you're disabled, in pain, and experiencing progression. I pray that the new regimen is your ticket out.

I love 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
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Old 08-16-2012, 08:33 AM   #14
Andrea Barnett Budin
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Re: Adding Carboplatin to Perjeta and Herceptin

Dearest Sheila,

Always always always thinking of you. You are one of the most remarkable women I've ever had the pleasure to know. (Even if it is a cyberspace love affair...)

My husband is diabetic and having major nerve issues (eye and thigh, ulna). The doc has recommended just what I've been pleading with him to take. He's not a supplement person. But since the endocrin lady told him, he's added some.

B12 (helps energy as well as nerve repair) and B6. Also Alpha Lipoic Acid (600 mg), L-Carnitine 500 x 2 and Co-enzyme Q-10 -- 150 X 2.

I pray these will help you get some relief. And, of course, that your new recipe will be effective and kick canser's butt!

Much love, as always, always, always,

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 08-16-2012, 10:59 AM   #15
Lani
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Re: Adding Carboplatin to Perjeta and Herceptin

not saying it will help, but doubt it could hurt:

have you ever tried TENS--transcutaneous electronic nerve stimulation

Non invasive, it uses gel pad electrodes attached by wires to a machine smaller than a transistor radio
(really dating mysel!!!)

It works on the prinicipal that if you place the ekectrodes between the pain and the brain that it will interfere with the gating mechanism of incoming pain messages to the spinal cord and brain.

It sort of mildly tickles the nerve above where the pain is and works similarly to biting your finger when you stub your toe. The brain doesn't seem to be able to process two pain messages coming at the same time, so by biting your finger your toe pain seems less.

I knew a breast cancer patient who tried this 20 years ago, long before bisphosphonates were used, for pain from multiple mets in her thighs and pelvis and it seemed to help her.

Was it the placebo effect? Maybe. Was it coincidence? Perhaps. The devices are usually free to try from physical therapists, may be available to rent rather than buy and have come way down in price over the years as I understand it.

Perhaps asking your doctor for a referral to a pain doctor early on before things get out of hand would be useful---or at least ask if your doctor thinks this might be worth a try on the theory that there is no reason it should hurt.(you don't put it over the site of the pain but proximal to it so no strong electric fields near the tumor (it only uses pocket batteries anyway)and nothing is invasive, just skin pads with gel.) and it might possibly help.

As you know I ALMOST never make suggestions(I am not qualified to do so), just post info. Don't know if my suggestion is pertinent or advisable, but from what I have read and heard, it is unlikely it could hurt.

Best of luck
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Old 08-16-2012, 12:00 PM   #16
Andrea Barnett Budin
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Adding Carboplatin to Perjeta and Herceptin

In '01 I fell in a pothole and broke my ankle in 3 places, tore tendons and muscle and required surgery. After the 3 mnths of terrible pain they removed the cast and I was allowed to go for physical therapy. I did so 3 days a wk for mnths.

After phys therapy they put ice on the ankle and then the TENS machine. It vibrated little tiny tickles and after a while it lessened, so I asked them to turn the machine up. They did. And it was great for a while, but I needed to crank it up again. And again and again. They finally moved the machine next to me so I could do it myself.

I swear it's electronic nerve stimulation helped me heal and lessened the severe pain. I love that machine. And would recommend it to everyone! It was miraculous in helping me heal and experience far less pain.
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 08-16-2012, 07:26 PM   #17
Laurel
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Re: Adding Carboplatin to Perjeta and Herceptin

Sheila,

I was off the boards for a time and missed your update. I am so sorry to hear you are suffering and will pray you find relief and that the Carboplatin is a wonder drug for you. I know you are not one to complain so my guess is this nerve pain has you pretty low. Prayers coming your way. Hang in there and please update when you are up to it. Love to you!
__________________

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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Old 08-16-2012, 07:56 PM   #18
mmoons
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Re: Adding Carboplatin to Perjeta and Herceptin

Sheila-

I too was off the internet for a while, but immediately clicked on the post from you...and was so sad to hear of your pain.

I hope you feel all the love and support coming you way from all of us, Sheila. Please let us know how you feel - when you are up to it.

Love, love, love you and pray you feel better. I will eagerly watch for the post that the next cocktail has kicked this stupid beast far into oblivion.

XOXOXO

Maureen
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Maureen


My loves

IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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Old 08-16-2012, 09:04 PM   #19
Pray
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Re: Adding Carboplatin to Perjeta and Herceptin

Dearest Sheila,

I too am hoping and praying this new treatment for you works! My heart aches knowing you are in pain. Gods blessings to you Wonderful women. I hope we hear some good news from you soon. Peace my friend, Nancy
__________________
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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Old 08-17-2012, 07:36 AM   #20
ammebarb
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Re: Adding Carboplatin to Perjeta and Herceptin

I am also thinking about you and praying that you are getting some relief from pain and a good response to the carboplatin. Gentle hugs, dear Sheila.

Barb A.
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