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02-25-2007, 06:44 PM
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#21
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Senior Member
Join Date: Feb 2005
Location: Wisconsin
Posts: 159
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Chelee--
Of which HMO are you a member? I may have a contact there (I am in sr. management in an HMO in Wisconsin). If there is anything you think I can do, I'd be happy to help (although if you're in a large, national plan, I probably won't have much luck, but I'd be willing to try :-)
Val
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *
6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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02-25-2007, 08:04 PM
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#22
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Val, I belong to Blue Cross of CA. The lady that handled my grievance was truly *trying* to help me & now her boss or someone has told her to *redirect* me back to square one. I think she felt sorry for me because she talked to me enough to know what I was saying was all true.
Its usually a matter of finding that *right button* to push . If I could find that right person? These people at my group don't realize...I don't want trouble or lawyers...I just want to get the same trt anyone in my situation would get & then go home & live my life. All this stuff consumes me & sucks the life out of me. They are killing me! I just don't understand how they can get away with retaliation? Even the lady that did the intake on my grievance will validate to *anyone* that calls her the FIRST thing I said to her when I called was, "Are you *sure* this won't make things worse, because IF it will, I DON'T want to do this"!! She said "No, it certainly isn't suppose too". (Later she even apologized for whats happened to me...she feels horrible.
Since your work in management maybe you know who I could talk to that really might care & could help me? I'm at my wits end. Blue Cross is large as you know so I am not sure if you could help or not? But the fact that you offered means the world to me. That is beyond sweet of you! I just can't thank you enough just for offering to help me. If you have any ideas I am all ears.  Again, thanks a million for offering to help...what an awesome women you are.
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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02-25-2007, 09:28 PM
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#23
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Senior Member
Join Date: Oct 2005
Posts: 476
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Chelee,
I am furious in reading about the outlandish behavior of your onc. I wonder this HER2 Support goup leaders can write to your doctors about the weird and perhaps unethical behavior of your onc as a formal protest. Bigger voice is power. For a doctor who doesn't care about her patient is criminal and a breatch of their oath. We might even threaten to sue in the name of this fine group. Keep your cool and hope you do well physically.
__________________
Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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02-28-2007, 01:22 AM
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#24
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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CLTann, You are using the RIGHT word when it comes to the way my onc has treated me...it IS "criminal". Thats why I really do not for the life of me understand how they can get away with this?! What bothers me even more...if they are doing this to me...you know there are others. And most will NOT speak up & go as far as me & just take the abuse. That is why I would love to find a way to straighten this out...no one going through cancer trt deserves to be treated this way!
I know when I was first DX and I was NOT getting answers to my questions about what her2/neu, herceptin, Er & Pr status, FISH test, you name it! My cancer team started telling me to QUIT spending so much time on the internet...that is was NOT good for me. I let them know nicely it was the ONLY way I could find out anything. How many of you were told NOT to learn what you could about your DX, her2 status, etc? I bet not a one of you. Even all the books I was sent from the American Cancer Society said to learn all you can and stay involved. I told them knowledge was power and it made me more comfortable to understand all this. They said actually it can be a bad thing too. Ha. They really have a problem with me staying on top of things....and actually they SHOULD like it. Every place else likes it...not mine it seems.
Thanks for the support CLTann.
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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04-05-2008, 07:08 PM
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#25
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Guest
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No Physical Check
I suggest that you ask to see your surgeon every 6 months - your surgeon will probably be happy to do the physical check. My surgeon has found 2 different tumors that my oncologist and I never found. I think the physical check is one of the most important.
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04-06-2008, 11:20 AM
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#26
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Chelee,
How your onc is treating you is inhumane! I would contact the insurance commisioner and complain because you do have the right to a second opinion. I would also contact the medical board in your state and explain how your onc is treating you. When they take you on as a patient you are entitled to competent treatment by the doctor. If not satisfied you have the right as a patient to seek help elsewhere. Best of luck.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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