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KDR · 05-30-2014, 08:19 PM

I am very good friends with lk1 and we talk everyday. We used to see each other a lot, but our schedules have changed. But not a day goes by that we don't speak. I met Kim (Radiant) in California and in New York. I was supposed to meet with jkl in Pittsburgh as I am there often on real estate business, but she had a last-minute meeting that Friday. I am very friendly with AndiBB (love her) and Eileen (em...), who I see often. I was friendly with Donna Charpeid, who we just lost. She lived not far from me. Her husband and I keep up contact. I met Jay (Courtney's husband) in California. I absolute love Mamacze (Hey, angel) and we speak and share notes. Andi and Kim are my go-to's. Was also friendly with Kris (Krisvell) until we lost her.

JoanM is another of my favorite telephone check-in people. She is very much on top of breast cancer news. I love Michelle (Michka).

Fern (Waterdreamer) is a special friend on the West coast. We share experiences, possibilities and stories and lives.

I had many conversations with Denise, but never met her in person. I will never forget how she chilled me with the story that she was the third elementary teacher in the same classroom with breast cancer. I found her obit on the Internet when it was just an hour old and called her number, hoping it wasn't her, but her husband, Ted, said it was. Couldn't believe it. Asked him if he wanted me to post it or not. He said yes.

I am a big fan of Phil McCartin and his wife Lorraine and we confer often. Their tenacity will benefit us all, and already has.
I also have a deep respect for Rolepaul and the work he is doing, making strides for all of us. These are more go-to's.

I am Facebook friends with many here, the beautiful Adriana and Steph. I receive quite a lot of PMs and got one very special one a few months back that really blew me away. Sender, you know who you are. Sometimes a special message in the PM box just radiates right through you; there was one I remember from a man, and it was very special. People really watch and really care here. It is truly a bit of a family affair.

So, Leah, since I travel to PGH often, perhaps we will catch up one day. I haven't listed all my contacts and friends here. There are too many!

Like Sonali and the group from Genentech, etc.

In life, I have a lot of friends in general. I love it! I'd like to think that we are all friends. How did that old saying go? "In the world, there are no strangers, only friends you haven't met yet."

There are bound to be people I've missed; I still love you, I am just very tired. It's 11PM and I've been up since 530AM.

05-30-2014, 08:19 PM	#4
KDR Senior Member Join Date: Aug 2010 Location: New York, New York Posts: 1,580	Re: meeting others in real life too... I am very good friends with lk1 and we talk everyday. We used to see each other a lot, but our schedules have changed. But not a day goes by that we don't speak. I met Kim (Radiant) in California and in New York. I was supposed to meet with jkl in Pittsburgh as I am there often on real estate business, but she had a last-minute meeting that Friday. I am very friendly with AndiBB (love her) and Eileen (em...), who I see often. I was friendly with Donna Charpeid, who we just lost. She lived not far from me. Her husband and I keep up contact. I met Jay (Courtney's husband) in California. I absolute love Mamacze (Hey, angel) and we speak and share notes. Andi and Kim are my go-to's. Was also friendly with Kris (Krisvell) until we lost her. JoanM is another of my favorite telephone check-in people. She is very much on top of breast cancer news. I love Michelle (Michka). Fern (Waterdreamer) is a special friend on the West coast. We share experiences, possibilities and stories and lives. I had many conversations with Denise, but never met her in person. I will never forget how she chilled me with the story that she was the third elementary teacher in the same classroom with breast cancer. I found her obit on the Internet when it was just an hour old and called her number, hoping it wasn't her, but her husband, Ted, said it was. Couldn't believe it. Asked him if he wanted me to post it or not. He said yes. I am a big fan of Phil McCartin and his wife Lorraine and we confer often. Their tenacity will benefit us all, and already has. I also have a deep respect for Rolepaul and the work he is doing, making strides for all of us. These are more go-to's. I am Facebook friends with many here, the beautiful Adriana and Steph. I receive quite a lot of PMs and got one very special one a few months back that really blew me away. Sender, you know who you are. Sometimes a special message in the PM box just radiates right through you; there was one I remember from a man, and it was very special. People really watch and really care here. It is truly a bit of a family affair. So, Leah, since I travel to PGH often, perhaps we will catch up one day. I haven't listed all my contacts and friends here. There are too many! Like Sonali and the group from Genentech, etc. In life, I have a lot of friends in general. I love it! I'd like to think that we are all friends. How did that old saying go? "In the world, there are no strangers, only friends you haven't met yet." There are bound to be people I've missed; I still love you, I am just very tired. It's 11PM and I've been up since 530AM. __________________ 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. Last edited by KDR; 05-30-2014 at 08:37 PM.. Reason: Was interrupted!