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12-12-2009, 12:46 AM
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#1
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Recommendations for 4 months or 6 months?
I just got ahold of the "Consult notes & recommendations" from the (COH) City of Hope onc I went to for a 2nd opinion back in Sept. regarding trt options. My onc and the COH onc both agreed I would do Herceptin/Navelbine/Zometa. However after reading the COH recommendations she says I would be receiving Navelbine every 2 wks due to bone marrow tolerance. Then she goes on to say she would treat me for four months with the Navelbine/Herceptin after which she would discontinue the Navy Beans and maintain me on Herceptin alone. (I guess she is assuming 4 months of Navy Beans is all I'd need?)
But my onc decided to start me on "wkly" Navelbine versas the every 2 wk dose...and said I'd have it for six months instead of 4 months. Plus my onc said in 3 months she will run a scan to see if it's working. I wonder why the COH onc says only 4 months? Since I've recurred in so many places I'm surprised the COH onc said only 4 months? Especially with MBC that's Her2. Does this seem right?
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.
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12-13-2009, 04:11 PM
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#2
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Recommendations for 4 months or 6 months?
I wonder why the 2nd opinion onc that I went too at COH that has much more experience and knowledge then my onc...seems to think only 4 months of Navelbine would be enough for me. Then after 4 months of Navelbine I would be able to go off Navelbine and just use Herceptin alone? (Just thinking out loud here...feel free to chime in.) lol
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.
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12-13-2009, 11:08 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Recommendations for 4 months or 6 months?
Ok...this is going rather well. lmao
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.
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12-13-2009, 11:26 PM
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#4
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Recommendations for 4 months or 6 months?
Never heard of an onco-clairvoyant. Sounds pretty ideal. Did they use the cutting edge palm scan?
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12-15-2009, 01:21 AM
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#5
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Recommendations for 4 months or 6 months?
Rich, rotflmao. I think you hit the nail on the head, that must be it! No palm scanner yet...but I'm pretty sure she will have it soon. 
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.
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12-15-2009, 02:41 AM
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#6
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Recommendations for 4 months or 6 months?
Have you tried asking her? (Even if she doesn't have a great track record for communication skills so far, she may actually have thought this over. If she hasn't, it would be nice to know)
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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12-15-2009, 01:29 PM
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#7
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Recommendations for 4 months or 6 months?
Jacqueline, Actually the 2nd opinion onc that said this does have a good track record unlike my onc. I read this on my 2nd opinion's "consult & recommendation" notes I requested. That onc has a very impressive backround so that's why I was curious as to her comments? I put a call into her a week or so ago but haven't heard back from her yet?
It sure would be nice if she was right...just not sure how she comes up with that conclusion?
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.
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12-15-2009, 03:03 PM
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#8
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Recommendations for 4 months or 6 months?
Hi Chelee,
I think I hit the send button too quickly. Should really start reading my own posts before I send them. What I meant is, why don't you ask the onc that's coordinating your treatment. It seems s/he's a bit difficult to talk to. Perhaps there's a reason for choosing this protocol? Perhaps it's based on new information? Or better yet, get the two oncs to discuss it and let you know what they come up with. I wish I could just bring you to the Netherlands for treatment. I would know where to go, whom to ask, and it wouldn't all have to take so long.
Anyway, how is your poor femur doing? Is it healing?
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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12-15-2009, 10:48 PM
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#9
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Recommendations for 4 months or 6 months?
I think you can get a medical grade version of this with a palm scanner. Don't get me wrong, I love the idea. Both my parents' medical folks assured them they were "cured"...before they earned the advanced cancer badge. |
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12-16-2009, 02:55 PM
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#10
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Re: Recommendations for 4 months or 6 months?
That's pretty funny Rich. I got through all the features until I finally found out what it was for! I wish there was a medical version. "Mobile MRI!"
Sorry Chelee, I don't know much about what you're asking, but keep asking, I'm sure you'll find an acceptable answer somewhere.
Best wishes to you. Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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