HER2 Support Group Forums - View Single Post - Lani, propeller heads, and WBR sisters/brothers ~ looking for info and ideas

hutchibk · 08-30-2009, 12:29 PM

Denise, the genesis and continuation of my brain mets story and treatments was this: Apr 2007 diagnosed with 3 small measurable brain spots/metastasis, and numerous "punctates".

I was offered WBR followed by Tykerb/Xeloda. This was one month after Tykerb came into mass access. My docs and I all agreed to approach the plan backwards in a way. We decided to start Tykerb/Xeloda first, monitor me closely, see what that gained us, and then consider WBR if warranted.

Tykerb/Xeloda eliminated the brain mets on its own with no rads, for 18 months, and kept everything below the chin completely stable.

Last Sept we saw 5 of the original spots "wake" up again. They hadn't grown, but they had started to "shine" on MRI. So, we decided to target them with IMRT. It knocked them out and we switched my systemic treatment to Tykerb/Herceptin.

Ty/Herc kept me stable and clear on MRI in the brain until we saw a new spot in June, 2 months ago. (not one that showed up originally, a totally new one). It has continued to keep me stable below the chin.

We targeted that one with IMRT. The MRI last week was the follow-up to see how it looked after zapping that one, and now they see the two new little critters.

I asked him about adding Xeloda back in - if there was any synergy with the Ty/Herc and he says he believes that my fairly lengthy exposure to Xeloda already speaks to potential resistance to it, and if we did add it back in that we would see more really uncontrollable side effects than anything.

Same with adding Temodar right now, or switching to Avastin... but those are deeper questions that I have for them next week. I don't know if he would add either with Ty/Herc, and he is not inclined to upset the whole apple cart and remove me from Ty/Herc since it is holding me very stable below the chin. He also does not believe it is time for trial or experimental anything yet. He has associates at MDA and Baylor in Houston (as well as elsewhere), so I don't have to go there in person, he reaches out for input if we need it.

But, he is not opposed to me bringing in things that I learn here, and mulling them over....

So, what I plan to do is have these two new little critters target zapped (whack-a-moled) and buy some time to look farther, deeper, wider before signing on for WBR. I at least want to get my PET scan done at the end of Sept to verify that the torso is still stable. If it isn't, then we would have to start talking about changing the systemic treatment, which could include things like Temodar or Avastin, etc...

Plus, it buys me more time to get some travel done with my sweetie before I might have to start WBR and all the recovery that will come with that.

Keep the ideas coming girls. I am looking forward to my classes with Marie and Lani!!

08-30-2009, 12:29 PM	#10
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Re: Lani, propeller heads, and WBR sisters/brothers ~ looking for info and ideas Denise, the genesis and continuation of my brain mets story and treatments was this: Apr 2007 diagnosed with 3 small measurable brain spots/metastasis, and numerous "punctates". I was offered WBR followed by Tykerb/Xeloda. This was one month after Tykerb came into mass access. My docs and I all agreed to approach the plan backwards in a way. We decided to start Tykerb/Xeloda first, monitor me closely, see what that gained us, and then consider WBR if warranted. Tykerb/Xeloda eliminated the brain mets on its own with no rads, for 18 months, and kept everything below the chin completely stable. Last Sept we saw 5 of the original spots "wake" up again. They hadn't grown, but they had started to "shine" on MRI. So, we decided to target them with IMRT. It knocked them out and we switched my systemic treatment to Tykerb/Herceptin. Ty/Herc kept me stable and clear on MRI in the brain until we saw a new spot in June, 2 months ago. (not one that showed up originally, a totally new one). It has continued to keep me stable below the chin. We targeted that one with IMRT. The MRI last week was the follow-up to see how it looked after zapping that one, and now they see the two new little critters. I asked him about adding Xeloda back in - if there was any synergy with the Ty/Herc and he says he believes that my fairly lengthy exposure to Xeloda already speaks to potential resistance to it, and if we did add it back in that we would see more really uncontrollable side effects than anything. Same with adding Temodar right now, or switching to Avastin... but those are deeper questions that I have for them next week. I don't know if he would add either with Ty/Herc, and he is not inclined to upset the whole apple cart and remove me from Ty/Herc since it is holding me very stable below the chin. He also does not believe it is time for trial or experimental anything yet. He has associates at MDA and Baylor in Houston (as well as elsewhere), so I don't have to go there in person, he reaches out for input if we need it. But, he is not opposed to me bringing in things that I learn here, and mulling them over.... So, what I plan to do is have these two new little critters target zapped (whack-a-moled) and buy some time to look farther, deeper, wider before signing on for WBR. I at least want to get my PET scan done at the end of Sept to verify that the torso is still stable. If it isn't, then we would have to start talking about changing the systemic treatment, which could include things like Temodar or Avastin, etc... Plus, it buys me more time to get some travel done with my sweetie before I might have to start WBR and all the recovery that will come with that. Keep the ideas coming girls. I am looking forward to my classes with Marie and Lani!! __________________ 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."