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06-26-2007, 08:12 AM
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#1
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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The key to watchful waiting in my case was the impending Tykerb/Xeloda. Since we knew that it should efficiently cross the blood-brain barrier, we had a decent chance that it might get us somewhere with the brain mets. Also, the other key is to have MRIs often. Mine are scheduled at 6 weeks apart. If I were not switching to Ty/Xel, I would not have have asked for this approach. And my plan is to do targeted rads if the next MRI only shows stable disease and not noticible shrinkage. But at least I was able to wave them off of WBR. If things go the other direction, I will go to MD Anderson and talk to them about targeted rads in combo with Temodar, etc. But for now, we are not losing ground and are giving the drugs time to work if they're gonna. It was a calculated risk, but I also asked my docs to tell me up front if they thought it was a really bad idea, and both of them said that upon further consideration chances were very slim that we would see very much progression in such a short time, that the spots were not in dangerous places and that there was no swelling around any of them. A lot of details were taken into consideration before we all agreed that this approach was OK.
__________________
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."
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06-26-2007, 03:53 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Brenda what I admire about you is that you are making your own informed choices. That's great, whatever the future brings you, you know that you are doing what is right for you.
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06-26-2007, 03:55 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Beckie, good to hear you have everything under control and you are happy with your medical team. I'm looking forward to the gathering in August, would love to meet you there.
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06-29-2007, 11:31 PM
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#4
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Brain MRI
Wow, once again I am in awe of the information and support on this site. When do you ask your doctor for a brain MRI? I am a 14-month survivor and feel good. Still on Herceptin til the end of this year.
Do I need to ask for a brain MRI now. Or will I get a "feeling" of symptoms if this should occur in my body? I am stage IIb.
BECKIE,
So glad that you insisted on the MRI. Not the kind of news you wanted, but sure sounds like from our friends on the board that it is treatable. Keep up the good work of asking for the best treatment and tests available. We are all behind you.
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
Last edited by Catherine; 06-29-2007 at 11:34 PM..
Reason: could not remember Beckie's name.
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06-30-2007, 10:12 AM
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#5
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I had no symptoms at all. We found my mets incidentally. We had a planned MRI of a known bone spot in my neck at C3. I asked my onc if I could go ahead and get one of the brain since I would be on the table anyway. It had been 18 months since we had MRIed the brain and I wanted to be sure all was still clear. He agreed it would be prudent since we were there anyway. We are both glad that I suggested it!
I think it is becoming time (at least for mets patients...) that if our docs aren't scheduling brain MRIs at least once a year, that we must start INSISTING upon them. The key to keeping this stuff under control and giving ourselves as many options as possible is finding reoccurances as early as possible!
__________________
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."
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