HER2 Support Group Forums - View Single Post

Chelee · 01-09-2010, 04:45 PM

Hi Vicky, First I have to tell you that I had the "same" experience you had with the TCH. It was either the 4th or 5th infusion of TCH and I didn't feel like I had my chemo either. Your the first one I've heard say that besides me. I even called my chemo nurse to ask if she forgot to give me my Taxotere or something...that I felt like I had no chemo this time? She assured me I got everything & said to enjoy myself. lol (So strange, I thought I was the only one.)

As far as scans go I was given a baseline once I was staged after surgery. I had a PET/CT and brain MRI. After I completed trt I was scanned again. Any time I complained of a symptoms I got scanned. I've only been turned down once so far.

As to tumor markers (CA27.29) that is something they did from day one. Had a baseline TMs....and have continued to have them about every 3 months. For me personally they are very reliable. The entire 3.5 yrs I was NED they stayed between 15 & 18...never moved. Then they slowly over a yrs time inched up & that's when I made my onc run a PET/CT and found my recent recurrence. (So I credit my TM'ers 100% for us finding out I'd recurred.) We will continue to run my markers. Alot of onc's are totally against running them as they aren't reliable for everyone. Tumor markers are really just one piece of the puzzle they can look at with everything else to see what's going on.

As to your actually question "no" I did not have to fight for them...this was their choice/protocol. Maybe because I was already stage IIIA, 3.5 cm mass, Her2/neu, 3+++, 5 pos nodes. That might of played a big part in their decision to run markers? (Just quessing?) And no, I do not believe TM'ers or scans are standard of care. Most onc's these days believe in waiting for symptoms. But without my TM'ers I would not of known about my recurrence. So I'm all for running them...but let me say again...they do not work for everyone.

Chelee

01-09-2010, 04:45 PM	#5
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: Tumor Markers & Update Hi Vicky, First I have to tell you that I had the "same" experience you had with the TCH. It was either the 4th or 5th infusion of TCH and I didn't feel like I had my chemo either. Your the first one I've heard say that besides me. I even called my chemo nurse to ask if she forgot to give me my Taxotere or something...that I felt like I had no chemo this time? She assured me I got everything & said to enjoy myself. lol (So strange, I thought I was the only one.) As far as scans go I was given a baseline once I was staged after surgery. I had a PET/CT and brain MRI. After I completed trt I was scanned again. Any time I complained of a symptoms I got scanned. I've only been turned down once so far. As to tumor markers (CA27.29) that is something they did from day one. Had a baseline TMs....and have continued to have them about every 3 months. For me personally they are very reliable. The entire 3.5 yrs I was NED they stayed between 15 & 18...never moved. Then they slowly over a yrs time inched up & that's when I made my onc run a PET/CT and found my recent recurrence. (So I credit my TM'ers 100% for us finding out I'd recurred.) We will continue to run my markers. Alot of onc's are totally against running them as they aren't reliable for everyone. Tumor markers are really just one piece of the puzzle they can look at with everything else to see what's going on. As to your actually question "no" I did not have to fight for them...this was their choice/protocol. Maybe because I was already stage IIIA, 3.5 cm mass, Her2/neu, 3+++, 5 pos nodes. That might of played a big part in their decision to run markers? (Just quessing?) And no, I do not believe TM'ers or scans are standard of care. Most onc's these days believe in waiting for symptoms. But without my TM'ers I would not of known about my recurrence. So I'm all for running them...but let me say again...they do not work for everyone. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.