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hutchibk · 01-18-2008, 12:27 PM

I can honestly say that I never wanted more chemo or surgery! So I know how Annette feels. That said, and given there is no way to reverse what has already been (apparently) inefficiently done, (I would file a complaint with the FL medical assoc), in my opinion in the best interest of fighting for her life and the best possible outcome, I would:

1. if she has good trust in her oncologist, have him and the surgeon talk to each other, (if they haven't already). Have the Onc question him about the results and methods (and mistake)...
2. meet with a radiation oncologist recommended by the the most trustworthy of the doctors in her world. Have him also talk to the surgeon and pose questions.
3. open her brain to the possibility that more surgery might be the most prudent thing to do to be as certain as is possible that all cancer is gone.
4. I could be wrong, but I don't believe that chemo really treats what might be found in fatty tissue. Chemo works through the lymph and blood systems... I tend to believe that that would be in the realm of radiation for treatment. But remember, I could be wrong. That is a question for the experts.

But by all means, the doctors need to be talking among each other to sort this out for the best possible outcome, and you (as her advocate) and she need to stay in the loop on every level of this and make sure you are as knowledgeable as possible as she moves forward.

There are MANY others here on our site who are much smarter than me and who will be able to give you a lot of good info and a ton of support. Remember to always be a COMPELLING patient, that is the most fundamental advice I can offer to anyone starting this journey.

01-18-2008, 12:27 PM	#2
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	I can honestly say that I never wanted more chemo or surgery! So I know how Annette feels. That said, and given there is no way to reverse what has already been (apparently) inefficiently done, (I would file a complaint with the FL medical assoc), in my opinion in the best interest of fighting for her life and the best possible outcome, I would: 1. if she has good trust in her oncologist, have him and the surgeon talk to each other, (if they haven't already). Have the Onc question him about the results and methods (and mistake)... 2. meet with a radiation oncologist recommended by the the most trustworthy of the doctors in her world. Have him also talk to the surgeon and pose questions. 3. open her brain to the possibility that more surgery might be the most prudent thing to do to be as certain as is possible that all cancer is gone. 4. I could be wrong, but I don't believe that chemo really treats what might be found in fatty tissue. Chemo works through the lymph and blood systems... I tend to believe that that would be in the realm of radiation for treatment. But remember, I could be wrong. That is a question for the experts. But by all means, the doctors need to be talking among each other to sort this out for the best possible outcome, and you (as her advocate) and she need to stay in the loop on every level of this and make sure you are as knowledgeable as possible as she moves forward. There are MANY others here on our site who are much smarter than me and who will be able to give you a lot of good info and a ton of support. Remember to always be a COMPELLING patient, that is the most fundamental advice I can offer to anyone starting this journey. __________________ 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."