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hutchibk · 07-07-2008, 07:54 PM

Hi Gill-

a few things to help you while you consider these trials... and I thank you for considering participating as I believe these trials are very important for refining the future of HER2 treatment for those who come after us!

1. Tykerb crosses the blood/brain barrier, and is currently
thought to perhaps protect the brain from metastasis if used in early treatment. Not a bad reason to participate in a Tykerb trial. Some on here have combined Tykerb with Herceptin already and are tolerating it well. Also, there was a newer study posted here a few weeks ago that spoke to the promise of Herceptin with Tykerb...

2. There is no telling whether the Herceptin for a year is the answer for you or not. It has contributed to putting some of our members in remission for many years and then others of us have had recurrence after a year or more of Herceptin... it's all just a big unpredictable ball of confusion at this point in time, but we all hope to have predictive testing on our side within the next 5-10 years. I hope they hurry!

3. Tykerb side effects vary by individual. I have been very fortunate to have had very little side effect from Tykerb. I got a very mild bout of dry skin on my cheeks for about 2 weeks and it disappeared. I had about 2 months of sporatic diarrhea, but that went away with a disciplined diet and my body getting used to the drug, and after more than a year I have virtually no side effect. Some here have had much more acute side effects. It just depends on the individual.

Good luck with whatever you decide. I wouldn't worry too much about the side effects. I think they are very manageable and can be easily mitigated.

Brenda

07-07-2008, 07:54 PM	#2
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Hi Gill- a few things to help you while you consider these trials... and I thank you for considering participating as I believe these trials are very important for refining the future of HER2 treatment for those who come after us! 1. Tykerb crosses the blood/brain barrier, and is currently thought to perhaps protect the brain from metastasis if used in early treatment. Not a bad reason to participate in a Tykerb trial. Some on here have combined Tykerb with Herceptin already and are tolerating it well. Also, there was a newer study posted here a few weeks ago that spoke to the promise of Herceptin with Tykerb... 2. There is no telling whether the Herceptin for a year is the answer for you or not. It has contributed to putting some of our members in remission for many years and then others of us have had recurrence after a year or more of Herceptin... it's all just a big unpredictable ball of confusion at this point in time, but we all hope to have predictive testing on our side within the next 5-10 years. I hope they hurry! 3. Tykerb side effects vary by individual. I have been very fortunate to have had very little side effect from Tykerb. I got a very mild bout of dry skin on my cheeks for about 2 weeks and it disappeared. I had about 2 months of sporatic diarrhea, but that went away with a disciplined diet and my body getting used to the drug, and after more than a year I have virtually no side effect. Some here have had much more acute side effects. It just depends on the individual. Good luck with whatever you decide. I wouldn't worry too much about the side effects. I think they are very manageable and can be easily mitigated. Brenda __________________ 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."