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hutchibk · 03-26-2007, 11:47 PM

When I finished my initial cycle of chemo in 04, my onc told me he wanted to keep me on a 3 month check-up schedule until about 7-8 years out. He doesn't like to take chances with Her2neu.

We did tumor marker and blood work every 3 months. (the tumor markers have saved my life twice, as they have corresponded directly with both of my recurrences and have given us very early indication to follow through with scans). We also did bone scans every 6 months. About 6 months out I had pain across my chest and under both arms as well as the unaffected breast. We did a breast MRI and nothing showed up. I went to my Plastic Surgeon and he said that I had formed scar tissue around my implant and that it was causing the pain. He could remove most of it surgically and it would relieve the pain. (He was right)

I waited about 6 months to do the surgery. About a month before the surgery, we noticed in my 3 month check up that my tumor markers had started to inch up. My onc said to get the surgery out of the way and then we would talk about what to do or if we would just be on "watchful waiting". Well, the surgeon removed the scar tissue and sent it to pathology and the pathologist found a very small spot of tumor that had come off of the muscle under the implant when he took out the scar tissue. So small that the surgeon didn't even notice it. Well, this sent us on a frenzy of scans (CT, MRI) that revealed nothing else until we did a PET, and it revealed very small mets in my lungs, chest nodes and a small rice size tumor in an under arm node. Jumped right back into chemo, Taxol/Herc/Carbo.

After 6 months on that cycle, my tumor markers had dropped down to below 10, so my onc kept me on Herceptin and 3 week check-ups, and when nothing new showed up, he decided it was OK to move me to 6 week check-ups. On my first 6 week check-up we found again that my tumor markers were inching up. We immediately did bone scan and PET/CT. Sure enough, the 3 small chest nodes were shining again, as well as a little spot of bone mets on my cervical spine at about C2. And here I am today... Taxol/Herceptin indefinitely.

I don't know if tumor markers are as accurate for everyone as they have been for me, but I love them. They have saved my life twice now, by giving us the earliest possible indication that we had activity.

03-26-2007, 11:47 PM	#9
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	When I finished my initial cycle of chemo in 04, my onc told me he wanted to keep me on a 3 month check-up schedule until about 7-8 years out. He doesn't like to take chances with Her2neu. We did tumor marker and blood work every 3 months. (the tumor markers have saved my life twice, as they have corresponded directly with both of my recurrences and have given us very early indication to follow through with scans). We also did bone scans every 6 months. About 6 months out I had pain across my chest and under both arms as well as the unaffected breast. We did a breast MRI and nothing showed up. I went to my Plastic Surgeon and he said that I had formed scar tissue around my implant and that it was causing the pain. He could remove most of it surgically and it would relieve the pain. (He was right) I waited about 6 months to do the surgery. About a month before the surgery, we noticed in my 3 month check up that my tumor markers had started to inch up. My onc said to get the surgery out of the way and then we would talk about what to do or if we would just be on "watchful waiting". Well, the surgeon removed the scar tissue and sent it to pathology and the pathologist found a very small spot of tumor that had come off of the muscle under the implant when he took out the scar tissue. So small that the surgeon didn't even notice it. Well, this sent us on a frenzy of scans (CT, MRI) that revealed nothing else until we did a PET, and it revealed very small mets in my lungs, chest nodes and a small rice size tumor in an under arm node. Jumped right back into chemo, Taxol/Herc/Carbo. After 6 months on that cycle, my tumor markers had dropped down to below 10, so my onc kept me on Herceptin and 3 week check-ups, and when nothing new showed up, he decided it was OK to move me to 6 week check-ups. On my first 6 week check-up we found again that my tumor markers were inching up. We immediately did bone scan and PET/CT. Sure enough, the 3 small chest nodes were shining again, as well as a little spot of bone mets on my cervical spine at about C2. And here I am today... Taxol/Herceptin indefinitely. I don't know if tumor markers are as accurate for everyone as they have been for me, but I love them. They have saved my life twice now, by giving us the earliest possible indication that we had activity. __________________ 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."