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Old 04-13-2014, 04:26 AM   #1
Chuck18
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Brain mets, WBRT, SRS, TDM1 and a VP shunt

Not sure if this is the right forum. If not, please let me know which one to post in.
My wife received TDM1 for the first time on March 9th, and had a severe reaction, with greatly increased brain edema. We found out later that this was also discovered at the University of Colorado in patients that had undergone previous SRS, as reported in the Feb 2014 Neuro-Oncology journal. My wife has also undergone three rounds of SRS in 2013.
After initial treatment with high steroid dosages, the oncologist, neurosurgeon & radiation oncologist decided to insert a VP shunt, which has helped.*My wife is now scheduled to restart the TDM1 today,, and also undergo another round of SRS in about 2 months. The doctors here admit that they do not know of any similar cases that include brain mets, WBRT, SRS, TDM1 and a VP shunt. They called my wife a "pioneer".
Is there anyone out there who is aware of a similar scenario?
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Old 04-13-2014, 08:08 AM   #2
KDR
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Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt

Chuck18,
It is very upsetting that your wife (and you) had to endure such a scary experience. I am hoping she sails through the rest of her treatments with as much ease as possible. I personally do not have experience with the factors in her treatment, but wish you all good things.
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 04-13-2014, 06:37 PM   #3
BonnieR
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Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt

Chuck, I'm glad you found us but sorry you had to. I think where you've posted is fine and should be seen by our more senior and knowledgable members who can relate to your wife's experience. Thank you for reaching out on her behalf. I know this must be a difficult experience for you too. Keep the faith
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Old 04-14-2014, 04:40 AM   #4
Aussie Girl
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Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt

Dear Chuck,

It's hard to be on the frontier of knowledge and experience. You must both be exhausted. My thoughts are with you and your wife. I am thinking that if the shunt allows the TDM1 to continue to do its work, that is a good thing. Hold your wife close and think of this cancer community surrounding you. You are not alone.

Aussie girl
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31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 04-14-2014, 01:34 PM   #5
Jackie07
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Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt

Hi Chuck,

I don't have experience in any of the things you've listed. But many members of my brain tumor support group (I have a separate issue of life-long brain tumor) have shunts to drain the fluid and reduce the cranial pressure (caused by the edema?).

http://www.cancer.org/cancer/braincn...eating-surgery

Hope things improve and T-DM1 will do it's job.

Sending you good vibes.
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Last edited by Jackie07; 04-14-2014 at 01:50 PM..
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Old 04-14-2014, 01:52 PM   #6
Pray
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Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt

Chuck, please know that your wife and family are in my prayers. Gods blessings.
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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)
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Old 04-14-2014, 04:18 PM   #7
Rolepaul
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Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt

TDM-1 has Herceptin and emanstine bound together. If they get to the brain, it might be too aggressive inside of the fixed confines of an encapsulated lesion. It was important to start Intrathecal Herceptin at 40 mg per patient before going to the higher dose to prevent this same issue! Nina had no issues with Intrathecal Herceptin after SRS (twice) and another round of band radiation. She had radiation to the lower spine due to mets there. Nina has been on IT Herceptin at for 27 months with the disease kept at bay. I think TDM-1 is not a good idea for brain mets, but I am not 100% sure. I am sure for IT treatment. Please be aware that Emanstine was not allowed in the past because it was so toxic in the general body usage. If the cells are compromised in any way, and there are residual tumor cells present, the reaction may be too strong. That does not appear to be the case with Herceptin. We are looking at Perjeta the same way, but there is a reluctance by those in Clinical Affairs to use Perjeta because the Phase I trial at Northwestern for Herceptin through Intrathecal introduction is not yet complete.
PM me if you want.
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