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Old 08-03-2008, 11:10 AM   #21
hutchibk
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Dana - that joint pain should disappear when you finish Herceptin - it might take a few months...
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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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Old 08-03-2008, 11:26 AM   #22
DanaRT
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hutchibk,
I think it's the Herceptin too. My chemo nurse feels it's residual from the taxotere but I never had joint pain until I was on Herceptin alone.Thanks for sharing that it will get better.

Dana
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Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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Old 08-11-2008, 03:57 AM   #23
TerriC
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Dana, I had the hip, knee and joint pain also. Plus I was retaining water and the side effects would last for 4 or 5 days. I would just start feeling normal again and it would be time for another infustion. But I found that if we slow down my infusion rate, my joints only really bother me the first day-and only minimally. I am on weeky infusions and instead of the 30 minute rate, I get it over 60 to 75 minutes. It's worth the extra time to me so I don't feel so old afterwards.
Hope this helps.
Terri
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Found lump 3/07 at age 44
Surgery: 7/07 rt-MRM, lt-Simple Mast. w/ immediate implants using Alloderm
Tumor: 3 cm., grad III, poorly diff., Stage IIA, IDC, ER/PR-, HER2+++(FISH 3.2) 0/14 nodes
Chemo 8/07-3/08 AC x 6 DD, Taxotere x 12
Herceptin 3/08 weekly for 1 year-done 2/17/09!!!!
Brca 2 +, complete hyst 6/15/2009
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Old 08-25-2008, 11:29 AM   #24
StephN
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Wink Got Relief!

My physician's assistant noticed my hands early last spring and I had lots of those cracks and a bandaid on right index finger.

I told her that this problem gets worse as winter goes on and then REALLY bad when I start my gardening (even thought I wear gloves). Seems to be the rubbing of the tool handles on my already tender skin - through the gloves.

Anyway she recommended CARMOL 20. It is WONDERFUL stuff. Available at most any pharmacy and not real expensive like a prescription. (A little goes a long way.)

It is 20% urea, hypoallergenic, contains NO parabens, lanolin or mineral oil. Also NO aloe for people like my Mom who is allergic to that.

It just vanishes into my hands and I can use it multiple times a day on the worst parts. If a split really opens and starts to bleed it gets the antibiotic ointment.

However, since I started using the Carmol, my hands are about good as new! And I am on continuous Herceptin, which I thought might be part of the problem, which I am now questioning.

So, now I will see how it works in the coming wintertime.

P.S. I have also been getting my Herceptin infused over 45 minutes for years now. It does make a difference in how I feel.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 08-25-2008, 11:57 AM   #25
Mary Jeanne Phillips
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Dear StephN, thanks for the reply about the carmol20. I also read your story. It is very encouraging. I am now on Tykerb to interfere with the brain tumors hopefully and slow the growth in Liver, lungs, and bones. I have never taken the real intense systemic chemo since 2001 when I took cytoxin and Rfu or something like that plus 35 radiations. I am on macrobiotics and immune boosting hypnotherapy. Until Tykerb I felt GREAT even through 5 brain tumors and a craniotomy. Thank for writien. MJ
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