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Old 08-05-2008, 09:15 PM   #23
hutchibk
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Please, consider a few things before you start talking about death at your doorstep-

Also, it is probably not a case of "Herceptin not working particularly well for you" - it is a case of Herceptin only being one of the combo of targeted agents that researchers suspect are necessary to turn off all of the pathways that HER2 uses to escape and proliferate. Many of us, (including me) who have already been on Herceptin once, and switched treatments, are already planning for our future to add Herceptin back in WITH Tykerb - and many are getting nice results from that. So don't count Herceptin out at all. It is probably in your future again. But, for now, switching to Tykerb might be a very powerful option for you as it has been for many.

As far as WBR - Please get all the info available here on our site before you agree to that route. If you truly only see one met right now, WBR sounds to me to be overkill (like using a machine gun to kill an ant... it might cause collateral damage and is probably not necessary just yet, maybe never). One small met can better be knocked out with targeted radiation like Cyberknife or Stereotactic, and save WBR as a last resort for sometime in the very very distant future.

The two considerations you need to deal with right now are:

1. What type of treatment will best deal with the lung mets (which many of us have successfully knocked out more than once)

2. What type of treatments will succesfully deal with the one suspected brain met.

Tykerb/Xeloda both cross the blood brain barrier and can help treat and hold brain mets inactive for some time. And potentially help protect the brain from future mets (researchers are currently monitoring that prospect)... I believe that they can also work fairly well on the lung mets. Or it may be that your doc can consider the Tykerb with a different chemo that can deal even more powerfully with the lung mets... and use targeted radiation to knock out the brain met.

There are many options left to work with, several different combinations are possible. There is not only one way to kill or stun this rat that we call Her2 breast cancer... these days doctors are becoming more and more creative in their combinations and they are having some amazing results. One thought might be combining the Herceptin with Tykerb and a chemo which can offer a powerful punch that can treat the body mets as well as brain met. But I am not an ocologist, I just try and keep up with the research and always ask my doc lots of questions. He loves it. Ask Ask Ask your doctor many questions. Be as compelling a patient as possible!! Get your info in order. We can (and will happily) help you put together your list of very informed questions to ask your doctor as you proceed.

Please don't let this get the best of you. I am glad you got some support and rest in the PCU, but you have so many more options. We just have to work on staying as emotionally, mentally and physically strong and healthy as possible so that our doctors can keep throwing whatever they need to at our cancer to knock it back and render it inactive... until it pops up again and then throw the next thing at it. There is a lot in the pipeline and researchers are chasing HER2 pretty feverishly, so please just keep on keeping on and challenge your docs to be visionary and absolutely open-minded and confident in your treatment. Promise them that you will do your part to be as healthy as possible to tolerate whatever you need to fight this for many years...

Progression is only progression... and it can become regression very easily with creative combinations and visionary treatment. Always keep that in mind.

Love, Brenda
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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; 08-05-2008 at 09:26 PM.. Reason: typo
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