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Old 01-13-2012, 06:35 AM   #21
pinkpeonie
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Re: Cancer Etiquette: Talking to Someone With Cancer
Hi Ladies

I havent been on here for some time and have only just realised how many replies I had to this post.

I have only just read them now - not quite sure how I didnt get them before !!!
Anyway - I just wanted to say thank you so much for your supportive comments and so sorry that you didnt hear from me!!!

You will be pleased to know that I am actually going to look at a new school next week after all the sheenanigans of last year.
Am thinking a fresh start my be needed!!!

Trust you are all doing as well as possible and so sorry for the delayed response!!!

Have agreat day
Pinkpeonie xx
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Old 01-13-2012, 06:41 AM   #22
pinkpeonie
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Re: Cancer Etiquette: Talking to Someone With Cancer
Thanks Denise
I am still working this site out - I have only just read these posts after all this time!! Your comments did make me smile and thank you.
We hung in there til the end of the year but am looking into other options now!!
Hope you are doing well.
Take care PP.
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Old 01-13-2012, 11:06 AM   #23
meo
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Re: Cancer Etiquette: Talking to Someone With Cancer
I still have 2 more sessions of TCH, with Herceptin until October 2012. During the chemo, some well meaning comments of folks can be tough to take. As I was previously without medical problems, went to the gym, stayed slim, I thought I'd tolerate the chemo well. NOT! It has really taken it's toll on me...IBS, neuropathy, muscle aches, headaches, mouth sores ....etc., you've heard these already (even my nails hurt.)
Hearing of ladies accomplishing amazing tasks and coping so well made me feel like a failure at first. So glad we keep a positive attitude on this forum, I have benefited greatly from that. And I think you all will understand when I say that hearing of other's struggles has helped me put my journey in perspective and made me feel much less alone and given me strength to cope.
A big thank you to all my sisters on this site.
(still don't have my signature done )
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Old 01-14-2012, 05:50 PM   #24
Westcoastgirl
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Re: Cancer Etiquette: Talking to Someone With Cancer
Pink Peonie, I am a retired teacher. This teacher's behavior is worth a call to the principal. The teacher needs to be educated to save yet another situation such as you describe from happening. Intolerable!
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12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced

I have heard there are troubles of more than one kind
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Old 01-14-2012, 06:45 PM   #25
KDR
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Re: Cancer Etiquette: Talking to Someone With Cancer
I had my daughter's classmate's mother ask me, "What's your prognosis?" Crass, and she's a doctor. My response, "I don't know, what's yours?"

Also, never remind someone that you are just "Stage 0" or just "Stage 1" or any other lower stage than a Stage 4 patient, especially if you know the patient to be just that. It's almost of if the speaker/writer needs some kind of safety barrier and/or confirmation that they are not "as bad off" as the other, later Stage patient.

Karen
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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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