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Old 12-06-2007, 05:30 PM   #1
Vanessa
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Tykerb rash/A very good day

I know people have posted about the Tykerb rash and I believe I am just now experiencing it. It is mostly on my legs and looks like mosquito bites and itches like mosquito bites. Does that sound about right. I will get a chance to show my chemo nurse tomorrow.

On Tuesday, I had an appointment with my general practitioner, who practices both allopathic and alternative medicine. He asked me if he could pray for me and I said yes. He got down on his knees, took both of my hands and prayed. The next day on Wednesday, I had the best day ever. No naseau, I was able to eat, no diarrhea and I had a decent amount of energy. I was so grateful to have a good day and attributed to the prayer. However, this morning I woke up and I felt terrible. I had a headache, naseous, diarrhea and no appetite. I was extremely disappointed. I realize the prayer could have still made me have a good day, I guess I was just expecting more. Anyway, thanks for letting me vent. I just needed to write about it. Thanks.
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Old 12-06-2007, 06:26 PM   #2
Becca
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Vanessa, I have not had a rash like the other gals described, but more like what you are having. A small rash area, like a bite, maybe bigger with itching. Only a few for me, like on my back, shoulder, hand--on and off at different places.

My day yesterday was just like yours, felt good with plenty of energy--did holiday shopping most of the day. Today worn out, nausea, diarrhea. Hope tomorrow is a better day for both of us. Prayer helps me a lot--need to spend more time at it.
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Old 12-07-2007, 06:57 PM   #3
chrisy
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Vanessa, where did you find a doctor who will pray for you! That is really a blessing.

Sorry you're not consistently feeling well - and I hope things start to settle down for you, you sure deserve a break.

My rash was minor, then gone, and now is back again. For me, it's more like whitehead zits on my nose and also rashy on my back. I think also my scalp - but I can only see my nose so that's all I'm positive about.

Take care, my dear
Chris
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 12-07-2007, 11:36 PM   #4
Vanessa
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I wish all of our days could be good days. I did have another good day today, not quite as good as the other, but definately less nausea and diarrhea. My rash does look like mosquito bites and whiteheads and is very itchy. I have been using cortisone creme and my nurse recommended Calamine or Caladryl lotion.

Chrisy, the doctor that prayed for me is an MD that practices a combination of allopathic medicine and alternative medicine. He prays for all of his patients on the day of their appointments. He staffs every morning and includes prayer. This particular day I think he felt led to pray for me, after hearing about brain mets. It was a very powerful prayer. He takes care of my thyroid and monitors my heart, liver enzymes and other metabolic issues.

I have a spot on my scalp also. Most of them are on my legs. I have not done any Christmas shopping yet. I need to get to it. Here is hoping that we have more good days than bad days!
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Old 12-08-2007, 02:33 AM   #5
Roz
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Hi Vanessa,
I have a constant rash on my right arm (side of mastecotomy) and on the back of both of my hands. I put it down to slowly increasing the Tykerb. The body just gets ready to let the rash subside when I hit it with another half a tablet! However I think I will stop and 4 and half for some time now, so hopefully the rash will subside. I too had very big swings in energy, but it seems to have settled more now (I hope, anyway).
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diagnosed June 03. Rt sided Inflammatory BC in rt lower quadrant. 7cm tumour. Also 3 DCIS. 3 rounds of EC, mastectomy with axillary clearance (12 nodes+ of 19). 1 more EC. 5 weeks of rads, with weekly booster to attack skin lymph involvement. 4 cycles of Taxol. Tamoxifen.Recurrence December 04, Herceptin started early Jan05,+ Arimidex.
NED 26 mths. Recurrence early Mar07. Taxol added to Herceptin. NED. Will have total of 6 cycles, then Aromisan and Herceptin. Early Oct 07, recurrence to the pesky right upper lobe, with some pleural thickening upper rt hemithorax. T/X now the treatment. May 2008, Taxatere and Herceptin for lung recurrence
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Old 12-08-2007, 04:12 PM   #6
jml
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Rash & diarrhea is a GOOD thing!

My sister, (a physician recruiter for Genentech) and my Onc's NP told me that rash & diarrhea are thought to be a good indicators that you're responding to the drug!
Apparently, studies show anectodal evidence that the population that was most responsive/sensitive to Tykerb (& another drug that was presented, but I don't know which) also reported rash & diarrhea.
So, when I broke out into a dreadful rash all over my neck, that crept up behind my ears & all over my belly, I CELEBRATED!
Accupuncture has always been really effective in helping me manage the side effects of chemo like nausea, flu'ish feeling, & has even made the rash & diarrhea more manageable.
Regardless, I do a little happy dance as I'm itching & running to the restroom!
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Old 12-08-2007, 04:32 PM   #7
kareneg
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Wink

Dear Vanessa,

I am so sorry you are feeling like this I am praying that it gets better, and I also herd that if you get the rash that means your responding. I had Tykerb in 2006 and had no rash and I also did not respond to the treatment. So I pray you respond and feel better soon!
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Karen

IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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Old 12-10-2007, 08:41 PM   #8
hutchibk
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That is wonderful, Vanessa! My general surgeon asked if he could pray with me a few hours before my mastectomy. I said OF COURSE. He is a magnificent man. He has also prayed before the removal of my old port and the insertion of my newest port. I love him. He is one of my heros, as well as one of the most talented surgeons in town. He prays before every surgery, and preferably with the patient.

I have not have anymore rash since my first two weeks. I do occasionally have itching, but no rash or whiteheads. I am glad you had a couple of good days. I wish you many many more of those!
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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 12-10-2007, 09:44 PM   #9
tousled1
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Vanessa,

What a wonderful doctor you have. I've never run across a doctor that asked if he could pray for/with me. Sorry you're not feeling so great but it does make you appreciate the "good" days a whole lot more.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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