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

hutchibk · 08-31-2009, 08:20 PM

OK, so here is what I learned today:

I have a 1cm tumor sitting in the sella turcica (gesundheit) pushing on the pituitary gland, and a 6mm one directly above it, sitting next to the sella/pituitary stem, pushing on the optic chiasm of the optic nerves. There is no edema around either one, but it sounds like they are a bit complicated when it comes to treatment. Crap.

He says they are fairly slow growing. We went back to Nov 08 and didn't see them, but could see them barely (in retrospect) on the March 09 pictures, and then a little bit more on the June 09 pictures and of course, more enhanced on last weeks pics.

I guess this might explain some of my weird symptoms the last 3 months... excessive thirst (electrolyte imbalance?), mild appetite, mild mental fogginess - all due to a pissed off pituitary gland, and mild eyesight blurriness - due to a pissed off optic nerve.

Surgery is not possible because of the danger around the optic nerve, and resulting blindness.

Targeted rads (IMRT/Cyber/Gamma) are not possible because of the same danger.

If it weren't for the little one, we could probaby remove the pituitary one surgically with minor problem, but they are so close together that he really impressed on me that that would be risky.

He is very keen to the idea of not painting us into any corners, wanting to leave as many options open for future treatments that might be needed. We talked about two radiation options today but I need to talk to him again tomorrow to get more clarification of them.

We scheduled my PET for Weds to be absolutely certain that there is nothing new in the body. He needs that info to drill it down and help him decide on one of two options.

08-31-2009, 08:20 PM	#16
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Re: Lani, propeller heads, and WBR sisters/brothers ~ looking for info and ideas OK, so here is what I learned today: I have a 1cm tumor sitting in the sella turcica (gesundheit) pushing on the pituitary gland, and a 6mm one directly above it, sitting next to the sella/pituitary stem, pushing on the optic chiasm of the optic nerves. There is no edema around either one, but it sounds like they are a bit complicated when it comes to treatment. Crap. He says they are fairly slow growing. We went back to Nov 08 and didn't see them, but could see them barely (in retrospect) on the March 09 pictures, and then a little bit more on the June 09 pictures and of course, more enhanced on last weeks pics. I guess this might explain some of my weird symptoms the last 3 months... excessive thirst (electrolyte imbalance?), mild appetite, mild mental fogginess - all due to a pissed off pituitary gland, and mild eyesight blurriness - due to a pissed off optic nerve. Surgery is not possible because of the danger around the optic nerve, and resulting blindness. Targeted rads (IMRT/Cyber/Gamma) are not possible because of the same danger. If it weren't for the little one, we could probaby remove the pituitary one surgically with minor problem, but they are so close together that he really impressed on me that that would be risky. He is very keen to the idea of not painting us into any corners, wanting to leave as many options open for future treatments that might be needed. We talked about two radiation options today but I need to talk to him again tomorrow to get more clarification of them. We scheduled my PET for Weds to be absolutely certain that there is nothing new in the body. He needs that info to drill it down and help him decide on one of two options. __________________ 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."