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Old 09-16-2007, 08:13 AM   #1
Joy
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Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
I just have to say AGAIN

You people are the very best! Thank you for all of your kind words and compliments and sharing. So I couldn't take it anymore, with the rash-well and probably lots of other stuff, so I called my NP at the center. She prescribed oral minomycin and I started Friday night and my skin is almost completely cleared up. I'm quite shocked as I looked like a teenage boy with cystic acne by friday (I'm not making fun-I had terrible acne growing up took Accutane and everything) and much more back to the ALMOST 40, but still in my 30's, mom. My skin is definitely drier but I have lotions and potions for that.

I was intrigued by information I got in my other thread about acne meds making it worse and I've researched and found some info on that. So I also cut back on the acne oriented treatments. EGFR drug skin reactions rarely contain bacteria, like acne eruptions, and the reason-they think-that antibiotics like minomycin work is not because of the antibiotic property, but rather their anti-inflammatory properties.

This is very interesting to me because I've had eye troubles for years between all of our fun meds and the Colorado climate. I've had extreme dry eye and I've worked with my eye doc a lot on this. One thing he kept wanting me to do was go on minomycin as it does something (can't remember exactly) to help with dry eye.

Well I didn't really want to go on antibiotics, but the skin thing was so painful physically and emotionally that I broke down and I'm here to tell you my eyes look and feel the best they have in years and that result was almost immediate.

My worst side-effect so far is dizziness (my sister likes to ask how I can tell the difference). It is pretty weird and if I were in my 20's I might enjoy it, but it is really too weird for me now. I hope it passes like a lot of early side effects do.

I'm still feeling a little down in that now I'm on that dumb dog- chasing -the -tail -ride of modern medicine with drugs.

I was in a hotel room with a friend last weekend who is on a fair number of meds for other reasons and we are the same age and we just had to laugh as our pill bottles stacked up on the night stands. Then we were sorting them out when we were packing up, "Is that mine-oh-it's yours-okay how 'bout that one". I finally just started cracking up and said, "welcome to the nursing home". It is just crazy business and as maddening as it is, I'm grateful to be here and I do know that these meds have made that possible.

And I hope that the Tykerb is being as ugly on the cancer cells as it has been on my face-I hope that for everyone on this med.

Thanks fo r letting me share and I hope we all find what works to mitigate all these effects. AND thank you all for all of your information-what a difference it makes (there aren't words for it).
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 09-16-2007, 01:05 PM   #2
hutchibk
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Hey Joy - I just posted on your other thread some of the same info you learned ... we all just have a sort of harmonic convergence here on the board sometimes! LOL
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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."
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