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Old 04-09-2009, 06:22 PM   #3
hutchibk
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Join Date: Oct 2005
Posts: 3,519
I am not a doctor, but I am a patient who has been on Tykerb for 2 years. I disagree with your doc that it is the Xeloda. I would surmise that it is a combo of the two or soley the Tykerb. I say that because I started Xeloda first for 3 weeks with no diarrhea at all. When I added in the Tykerb, that's when I had the initial problems, immediately. I am now on Tykerb/Herceptin and I never had diarrhea on Herceptin alone, but I did when I added Tykerb in. With Xeloda, I was on 5 Tykerb per day. With Herceptin, I am on 4 Tykerb per day. If it is a problem that does not correct within a month or so with good diet, then it is not unusual for your doctor to lower your dose by one or perhaps two pills. Many here have had to do that and have not lost efficacy by reducing dose a little.

In my experience, it took me about a month for my guts to settle down after I started the Ty/Xel combination. I have to eat very very clean and healthy. It really makes a huge difference. During that first month I ate the BRAT diet for breakfast everyday. (Banana, rice, applesauce, toast). And, my doctor told me to take 2 immodium tablets immediately when the diarrhea started, and then to take one after each subsequent episode, until it stopped. I worried about taking too much immodium in a 24 hour period, but I did let myself take a total of 6 in a day when necessary. It did work well for me. After about a month, my bowels settled down. But, it always comes back if I break down and eat unhealthy. I can't eat anything fried or any junk food (potato chips, candy, cokes/sodas). The cleaner and healthier I eat, the more regular I am. I only indulge in fast food maybe once every couple of months if I am in a hurry. Otherwise I eat very healthy... fresh, clean, no processed foods from boxes (except pasta), whole grains, non-fat organic dairy, very little meat/poultry, very sporatic alcohol. That's what works for me.
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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; 04-13-2009 at 10:50 AM.. Reason: add info
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