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06-15-2009, 05:54 AM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 589
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Recommendation of a liver specialist?
Hi all,
I want to get a 2nd opinion for Caryn and I was wondering if anyone knows of a top notch liver specialist in NJ? I got a name of someone from University Hospital in Newark (they do liver transplants) but I'm wondering if there might be someone with more cancer experience. NY is also a viable option if it makes sense.
Thanks,
Eric
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06-15-2009, 11:39 AM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I have heard the name Dr. Myron Schwartz in the past, in NYC. Don't know anything about him to be able to recommend him though.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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06-15-2009, 06:02 PM
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#3
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Senior Member
Join Date: Sep 2005
Posts: 589
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Thank you. I got the name of a top guy from a friend and advised Caryn's Onc who volunteered to call him. I'm hoping we come up with something good because Caryn's struggling rather than improving as planned.
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06-15-2009, 09:31 PM
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#4
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Senior Member
Join Date: May 2006
Posts: 3,142
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Recommendation of a liver specialist?
I am wondering if there might be a liver specialist at Memorial Sloan Kettering if your first choice doesn't work out. Memorial Sloan Kettering has clinics in New Jersey and Long Island in addition to the main hospital in New York City.
Hugs to you and Caryn !!
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06-16-2009, 09:59 AM
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#5
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Eric and Caryn,
My prayers continue for both of you and your children. May God show you the way to the right doctor and right drugs.
Peace,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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06-16-2009, 11:43 AM
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#6
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Senior Member
Join Date: Dec 2006
Posts: 415
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Feel the chemo working?
Hi~
This may sound a little crazy, but does anyone else out there think that you can/have ever felt the chemo working?
I know my Onc would say it's not likely, but I'd swear that I feel something going on in my sternal nodes (site of current recurrence)-sort of like a dull, stabbing pain/sensation- nothing like I've ever experienced before...
Just wondering - once you're diagnosed with this disease you tend to wonder about every little sensation in the body...
Jml
ps-sorry everyone - i thought i started a new thread with this post - didn't mean to interrupt this one
Last edited by jml; 06-18-2009 at 07:06 PM..
Reason: misplaced this thread :O
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06-16-2009, 01:13 PM
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#7
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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You could post this separately. I felt pain around the tumor site in my breast during my chemo. Of course I had surgery before chemo. But I wondered too if the chemo were attacking the site.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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06-16-2009, 02:51 PM
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#8
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Senior Member
Join Date: May 2006
Posts: 3,142
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Recommendation of a liver specialist?
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06-16-2009, 06:58 PM
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#9
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Senior Member
Join Date: Sep 2005
Posts: 589
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Thanks Elaine.
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06-18-2009, 07:12 PM
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#10
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Senior Member
Join Date: Dec 2006
Posts: 415
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oops - mis-placed my post
Sorry Eric & everyone -
I didn't mean to interrupt your thread with my post. I thought I had started a new post & when I went back to look for it, I couldn't find it.Now I realize what happened.
My apologies again.
I hope you're able to find a liver specialist you can trust & respect. If you happen to be down here in Atlanta, the surgeon that did my liver resection is amazing & kind and I have the utmost respect as a surgeon and a human being.
Jml
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01-14-2012, 08:38 AM
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#11
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Guest
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Re: Recommendation of a liver specialist?
7 month old baby we are fostering has Hep c need pediatric hepatologist please!
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01-14-2012, 07:33 PM
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#12
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Recommendation of a liver specialist?
Dr. Kemeny at Memorial Sloan Cancer Center. She is supposed to be wonderful..
And yes, I have felt the chemo working. Strange, oddly comforting.
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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