Thread: Please !!!!
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Old 07-01-2009, 10:23 AM   #2
hutchibk
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Join Date: Oct 2005
Posts: 3,519
I agree Joe that it is a fine line, and I have been reluctant to post successes at times when others are experiencing failures. But I have also experienced recurrences when others have been getting wonderful results, and so it goes, around and around. Such is the nature of this disease.

We are an amalgamation of people who share a common subset of cancer. That is truly the only common thread. Each one of us will come at it from a different perspective and a will have different fruit to bear on the subject. We all have different bodies, different doctors, different experiences, different approaches, different results, different psychology, different theories, different faiths, different spirituality, different treatments, different needs. We live in different countries, eat different diets, have different living situations, working situations, spousal (or not) situations. No one thing mentioned, offered, espoused, touted, expressed or experienced is going to apply to all who visit here.

In this cancer life, I have learned that one must attend to shared information with a proper personal skepticism and ability to suss out what makes sense for them and what doesn't. Some days, I am more open to some things and certain info than I might be on other days. But it is up to me to take it or leave it or to not click on a thread that I just don't have the energy for. I take personal responsibility when I am here. I don't blame anyone for what they post, unless they break the code of the site. I don't get upset by anyone who is too sunny or positive when I am feeling blue or worried for my situation. If it doesn't float my boat that day or that week, then I just don't go there. Life is about choices and I can't blame anyone else for the choices I make.

I come here because this is a family to me. A group of people who I share something in common with. I come here to try and contribute to the conversation, with my perspective, successes, and failures, hoping they might be helpful to someone else in their fight. And I have learned WELL beyond my initial expectations - many hints and ideas that have possibly saved my life more than once. I promise that is not an exaggeration. Before I became an active member, I read the forums and learned about brain mets and lapatinib trials. Scared me to death! Not knowing that I would ever need it, I kept that info in my back pocket for 4 years... running it by my doc who always said that "we are not there yet, it is not out of trials, and let's hope we don't ever need it." Well, we did and it has been a savior for me for 2.5 years.

This is a support group and those who are members post what is close to their heart... it is an outlet, a forum, and a tool; and sometimes it is a vent, a rant, a sadness or a fear. Often it is a question, a prayer, an overtly positive message, a success, or just an update with warts and all. And sometimes it is a propeller-head named Lani who shares the future with us in ways that makes us HOPE AND CHEER, even though we may not understand anything written in the trial results that she posts. That is what support groups are all about. Sometimes you take, sometimes you give, and sometimes you just sit back and let it happen around you.

That said, anyone who joins here looking for a site that fills only a narrow need that they have, is a true curiosity to me.

I hope all who visit here will take personal responsibility for their choices.
__________________
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."

Last edited by hutchibk; 07-01-2009 at 11:23 AM.. Reason: typo
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