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10-30-2012, 02:42 PM
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#1
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: after reading post by Rolepaul on brain mets--repostr 4 those running out of opti
Two sites that were just blips were false alarms according to the radiologist and the doctor. Probably a Lumbar Puncture scar and a strain from when Nina was giving massages. The consensus is that there has been no evidence of disease in her brain and spine since April. Still having lots of chemo, but backing off MRI scans to once per 8 weeks, IV to three every four weeks, and IT to once every two weeks. Trying to get to once per month on the IT to save on travel expenses and vacation. If this continues, it is likely that we have passed the point of high concern for now.
Moral of the story, if you give massages that are deep tissue, hard yoga, and walk five miles a day; your back is probably going to hurt and might show on MRIs as dye uptake. Nina is doing great, but massages at 3:00 am are not sexy if you have to get up and go work in three hours.
Now we need to spread the news as I am hearing it might work on sub-surface tumors as well. As they did in Independence DAy, get the Morse Code going.
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12-23-2012, 08:16 PM
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#2
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: after reading post by Rolepaul on brain mets--repostr 4 those running out of opti
Results still show NED. Now to treatments once per four weeks for IT Herceptin and Topotecan, once per three weeks for IV HCarolina.erceptin. Both doctors are writing articles on Nina's care. We are trying to get out the word to any one that will listen to us. One year after diagnosis with a 90 day predicted lifespan, Nina is still her self.
We made a decision that life is too short to deal with people we do not know. The result is that we are moving from Raleigh North Carolina to just outside of Boulder Colorado. We will be near Nina's parents, cousins, Aunt, and other family. We love the area. I took a job consulting in the pharmaceutical area, and will be able to be more outspoken on the treatment for Nina. Same money, more travel, but should be better home life for us. This is the best Christmas present I could give Nina. Her present to me is to continue to be my life partner.
We want Nina's results to give hope for a better future to those who are in similar situations to our last Christmas. Everyone was making end of life decisions, but we made start of new life decisions. We wish all a Merry Christmas and have positive results in their healthcare. To those of you who are NED, we have joined you and want to stay here!
HAPPY HOLIDAYS!!!!!!!!!!
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12-24-2012, 07:26 AM
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#3
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: after reading post by Rolepaul on brain mets--repostr 4 those running out of opti
May she remain NED forever! My daughter,Susan, is following in her footsteps. The doctor said he will up the dose since he has consulted with your team. He hesitated to do it last session as my daughter had a bad reaction the treatment before with extreme vomiting and was hospitalized for a few days.
Hopefully this coming week he will give her the larger IT herceptin dose. The spine mets have been stable, but we would like to see a decrease in volumn and maybe even have them go completely away.
As in your wife's case, my daughter was given only a few weeks and she is floating along OK so far.(Diagnosed in July of this year.) Still just getting the 40 herceptin IT along with the topotecan.
Many good wishes and thanks for your information that helps others.
Ev
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10-31-2012, 08:58 AM
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#4
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: after reading post by Rolepaul on brain mets--repostr 4 those running out of opti
Paul,
So glad to hear this good news! My first post-gamma MRI is on the 8th, and I hope my news is as encouraging as Nina's.
You're both in my prayers for continued success and many, many years together!
Denise
__________________
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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10-31-2012, 10:08 AM
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#5
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: after reading post by Rolepaul on brain mets--repostr 4 those running out of opti
I am elated by this news, Paul! Oh, yeah!!!
Denise, you're gonna be good!
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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10-31-2012, 11:41 AM
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#6
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: after reading post by Rolepaul on brain mets--repostr 4 those running out of opti
How wonderful for Nina and you! Gods blessings to you both. You are in my prayers,
__________________
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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12-24-2012, 11:23 PM
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#7
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: after reading post by Rolepaul on brain mets--repostr 4 those running out of opti
Ev,
The vomiting may be due to the cancer cells being hurt. Nina and Carol in Malta both saw this. They need to bump the dose to 1.5 mg/kg, for Nina at 140 pounds this was 100 mg. If they are administering it twice per week, the 40 mg might work, but the concentration necessary for effectiveness was never fully understood until recently. The spinal fluid regeneration is much faster than for blood.
It is my hope that your Christmas be one filled with hope for Susan to recover as fully as Nina has done. I know what you are going through. Make sure Susan knows we are pulling for her. Have her doctors contact Dr. Loghin again after 1/2/2013. Keep on pushing. Never give up. Susan knows, I hate to lose.
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12-26-2012, 02:35 PM
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#8
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: after reading post by Rolepaul on brain mets--repostr 4 those running out of opti
Paul,
So happy you and Nina are making happy future plans! So much hope! So much love to share!
Best of everything to both of you in the New Year!
Denise
__________________
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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