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Old 04-10-2011, 09:44 AM   #21
Mary L
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Re: Another update on triciaK

Tricia, so glad you were able to sleep. I'm sure you feel much better because of it. Sending my prayers & Best Wishes. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 04-10-2011, 10:21 AM   #22
ElaineM
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Wink Re: Another update on triciaK

I just happened to remember something that happened to me several years ago.
I developed a terrible rash with some itching around my mouth, nose and on my cheeks. I went to several doctors and had allergy testing. No one could figure out what was wrong with me or what was causing the problem.
I decided to talk to my local pharmacist. She checked all the medicines I was taking for problems, ingredients and interactions and discovered the powder used as a filler or binder in my generic blood pressure medicine could cause a rash. The next day I took the medicine to my naturopath who has different kind of allergy testing than the allergist has. We discovered the pharmacist was 100% correct !!!!!!!! The day after that I called the insurance company. They sent a form for my doctor to fill out requesting the brand name of the medicine. He did that. The insurance company approved the request and I now use the brand name with no problems.
If it can happen to me it can happen to other people too. Maybe you would like to talk to a pharmacist about the itchy rash.
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ElaineM
12 years and counting
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Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 04-10-2011, 10:50 AM   #23
hutchibk
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Re: Another update on triciaK

Here's the info that was shared 2-3 years ago as a response to Tykerb rash.... please take it to your doctor and see if it will help. You definitely want to stay on Tykerb/Xeloda as long as it is working against the cancer, in my opinion.

*Employ a proactive approach in managing skin reactions.
*Suggest that patients use a thick, alcohol-free emollient cream.
*Suggest that patients use a sunscreen of SPF 25 or higher, preferably
containing zinc oxide or titanium dioxide
* If patient presents with rash, verify appropriate administration of drug and proceed with the following therapy algorithm:

Mild:
Minimally located
No impact on activities of daily life (ADL)
No sign of superinfection

Continue EGFR targeted treatment @current dose and monitor for change in severity.

topical hydrocortisone 1% or 2.5% cream and/or Clindamycin 1% gel

Reassess after 2 weeks, if reaction worsens or does not improve, proceed to next step.


Moderate:
Generalized
Mild Symptoms (e.g. pruritus, tenderness)
Minimal impact on ADL
No sign of superinfection


Continue EGFR targeted treatment @current dose and monitor for change in severity. Continue treatment of the skin reaction with the following:

Hydrocortisone 2.5% cream or Clindamycin 1% gel
or Pimecrolimus 1% cream
Plus Doxycycline 100mg BID or Monocycline 100mg BID

Reassess after 2 weeks, if reaction worsens or does not improve, proceed to next step.


Severe:
Generalized
Severe symptoms (e.g. pruritus, tenderness)
Significant impact on ADL
Potential sign of superinfection


Reduce EGFR targeted therapy as per label and monitor for change in severity. Continue treatment of skin reaction with the following:

Hydrocortisone 2.5% cream or Clindamycin 1% gel
or Pimecrolimus 1% cream
Plus Doxycycline 100mg BID or Monocycline 100mg BID
Plus Medrol dose pack

Reassess after 2 weeks, if reaction worsens, dose interruption or discontinuation may be necessary.

and then there's this from an abstract that I found from Dec 2009...
Rash
A common toxicity associated with lapatinib is skin rash. In the initial phase I study of lapatinib monotherapy, rash was reported in 31% of patients [20]. Similar rates of rash have been reported across the lapatinib clinical trials [2230]. In the large phase III trial of lapatinib plus capecitabine versus capecitabine alone, 28% of patients in the combination arm experienced rash, versus 15% in the capecitabine alone arm [27]. The vast majority of rash cases were mild to moderate (grade 1 or 2), with grade 3 rash seen in 1% of patients in both the combination arm and the capecitabine-alone arm.
The characteristic rash of lapatinib is shown in Figure 2. This rash has been seen as a class effect of drugs that target the ErbB-1 receptor. These targeted drugs also include the agents erlotinib, cetuximab, and gefitinib [38]. The drug-associated rash is characterized by inflammatory papules and pustules most often seen on the face, chest, and back and may resemble folliculitis or an acneiform drug eruption. The distribution is termed acneiform because the lesions are present at sites with large numbers of pilosebaceous units such as the scalp, face, neck, and upper trunk. However, the characteristic rash is different from classic acne vulgaris because of its lack of comedones. Histologic sections from patients who developed rashes while receiving cetuximab reveal suppurative folliculitis and superficial perifolliculitis as the most common histologic changes with microcomedones notably absent [39].




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Figure 2. A typical papular eruption on the face following lapatinib therapy. (Photo courtesy of Nancy U. Lin, M.D., and Margaret A. Haldoupis, R.N.)

The presence of rash in patients on the ErbB-1 inhibitors gefitinib, erlotinib, and cetuximab has been associated with superior radiographic response and symptom benefit [40, 41]. This observation led to speculation that the same may be true with lapatinib. While there has been no clear evidence to date of an association between rash and clinical benefit from lapatinib in breast cancer, a phase II study of lapatinib in patients with advanced liver, gallbladder, and bile duct cancers found that 20 of the 57 patients enrolled in the study developed a skin rash [42].
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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."

Last edited by hutchibk; 04-10-2011 at 04:50 PM..
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Old 04-10-2011, 03:38 PM   #24
Trish
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Re: Another update on triciaK

I'm looking forward to reading your autobiography and I think your family is extraordinarily fortunate to have you as their matriarch. I was on weekly Abraxane for 8 months with occasional breaks and it was very effective (in combination) in bringing down the tumour markers . I'm so glad the hives are beginning to abate. May things continue to improve,
Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 04-10-2011, 06:08 PM   #25
krisvell
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Re: Another update on triciaK

Hi Tricia,
Sending prayers and blessings your way and hope for the right treatment for you. I am new to the Stage IV journey and you are inspiration to me. I also want to read your finished manuscript.
Wishing you many good nights sleep.
Hugs,
Kris....
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06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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