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Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb

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Old 11-02-2007, 09:27 PM   #1
Vanessa
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I just started Tykerb today. I received it in the mail by fed ex. My doctor told me to start small (2 or 3) pills a day and then increase. I took 2 pills tonight, which I realize is a very small dose, but I haven't had any diarrhea yet, of course I realize it could hit me at any time. I am a little concerned about that side effect, but I am prepared with Immodium and will try the BRAT diet. I hope your side effects get better Roz.

I also appreciate your specific input Brenda, you have your information really organized. Anybody have dry lips and lining of the mouth. It seems like every chemo, antibody and even radiation has that as a side effect. I am interested in hearing about any other side effects anyone else had has and how they dealt with them. Also, can you purchase bentonite clay at a health food store? I am glad this tx is working for a lot of people.
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Old 11-04-2007, 03:45 PM   #2
hutchibk
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Hi Vanessa - sorry, I have been in San Antonio for a couple of days...

I haven't had specific dry lips or inside of mouth other than the typical feeling of being a bit dehydrated... so I drink, drink, drink water and fluids like crazy. I bought my bottle of Bentonite Clay at Whole Foods...

Let us know how you are doing!! I am still sailing with relatively NO side effects from Tykerb/Xeloda. Best of luck as you ramp up your doseage.
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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 11-07-2007, 01:01 AM   #3
Vanessa
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Brenda,

I don't know how you are doing it and how you started out at the maximum dose. I started at 2 and got severely sick at my stomach. So, my doctor told me to stop it for a couple of days and then start at one. She also gave me a shot of Aloxi today. So I am taking 2 Zofrans during the day and 2 phenergans at night and still sick at my stomach. I am so glad you tolerate it so well and thanks for your tips.

Roz,

I am also sleeping a lot with it. Again, I don't know how I would have felt if I had taken more than 2 to begin with. I think I am supposed to start with 1 tomorrow night. Also, my doctor believes that part of my stomach trouble is from the high dose of steriods during radiation. Oh well, we will see. I am determined to take this medicine. Good luck to everyone that is struggling with Tykerb.
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Old 11-07-2007, 01:55 AM   #4
Roz
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side effects
Hi Vanessa,
My oncologist said that they are seeing it in almost everybody. As my hospital has only got to dispense the EAP in the last few months, they are able to keep tabs on how people are responding. (i"m sure every hospital is the same tho) I looked up the dose of Tykerb I am taking and according to the official site 750mgms can be given to people with liver problems. So let's hope I can tolerate it so I can go up to 4 tabs in a week or so. Altho it's early days yet (3 days to be exact) I feel a whole lot better.
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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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