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hutchibk · 05-03-2009, 10:22 AM

I think the overall crapiness you feel is hungover from taxotere/carbo more than the Herceptin. I had taxol/carbo/herceptin a few years ago, and just felt hit by a Mack truck for about 3-4 months after finishing the taxol/carbo portion. Herceptin by itself is pretty easy to tolerate with mostly mild SEs.

My first go-round on Herceptin I had runny eyes and nose... this time, not really at all. But this time it is with Tykerb, so I wonder if somehow the synergy between the two negates certain side effects (while causing others...).

I get sporadic cramps in my leg muscles while sleeping - like one week out of every month. Acid reflux is a foregone conclusion for the rest of my life since being in cancer treatment, but only sporadically and mostly when I eat certain things. Never have I had diarrhea on Herceptin by itself, but definitely when I have had other treatments in combo with it.

Brittle nails became the norm due to taxotere for me, and they have never been good since. And then being on Xeloda for 18 months sealed the deal.

I think you will feel better the further out you get from taxotere/carbo. Those are nasty chemos, and I know that they each kicked my butt. I would be hard pressed to blame the enduring crummy feeling on Herceptin. Give it some time.

If your doc wants you on it for a full year, I would go with that, personally. HER2 is nothing to mess around with, good dx and clean margins or not.

05-03-2009, 10:22 AM	#5
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	I think the overall crapiness you feel is hungover from taxotere/carbo more than the Herceptin. I had taxol/carbo/herceptin a few years ago, and just felt hit by a Mack truck for about 3-4 months after finishing the taxol/carbo portion. Herceptin by itself is pretty easy to tolerate with mostly mild SEs. My first go-round on Herceptin I had runny eyes and nose... this time, not really at all. But this time it is with Tykerb, so I wonder if somehow the synergy between the two negates certain side effects (while causing others...). I get sporadic cramps in my leg muscles while sleeping - like one week out of every month. Acid reflux is a foregone conclusion for the rest of my life since being in cancer treatment, but only sporadically and mostly when I eat certain things. Never have I had diarrhea on Herceptin by itself, but definitely when I have had other treatments in combo with it. Brittle nails became the norm due to taxotere for me, and they have never been good since. And then being on Xeloda for 18 months sealed the deal. I think you will feel better the further out you get from taxotere/carbo. Those are nasty chemos, and I know that they each kicked my butt. I would be hard pressed to blame the enduring crummy feeling on Herceptin. Give it some time. If your doc wants you on it for a full year, I would go with that, personally. HER2 is nothing to mess around with, good dx and clean margins or not. __________________ 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."