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Old 02-01-2010, 12:53 PM   #1
Sheila
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The update I posted on Treatment

Just wanted you to know the update I posted...you all give me strength and hope! Thank you....


Re: Scanxiety Confirmed, Progression Shown
A quick update and thank you for all your support and information...the Avastin is approved, and I will begin tomorrow, so far no other agent. My muga last Thursday showed a major drop of 15 points, and now below 50....dont know if it was because I had it 2 days after my 3 week herceptin, the combo of the Tykerb/Herceptin, or the mass of lymph nodes in my chest pressing on my pulmonary artery...now I have to see a cardiologist...I asked about surgery or radiation, and was told i could get a consult, but it was probably a no....and now with Avastin, the surgery would be a no.
Just wish they were adding a chemo in...this has been a very trying week as my Dad was life flighted to a major heart institute in Illinois Saturday after suffering a heart attack...he had angioplasty and is doing amazing....he is so worried about me which makes all of this even harder.....so, cardiologist appt this week, Avastin tomorrow at 7am in Chicago...get the kleenex, let the nosebleeds begin....trying to stay focused and positive.
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 02-01-2010, 01:00 PM   #2
Rich66
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Re: The update I posted on Treatment

Glad your Dad is hanging in there.

Will you be staying on the Herceptin?

Might be worth asking for Avastin weekly.:
http://her2support.org/vbulletin/sho...218#post221218
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Old 02-01-2010, 01:07 PM   #3
StephN
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Re: The update I posted on Treatment

Dear Sheila -
Glad you are getting a consult with a rad onc. Hope they can do cyberkife and give you some relief. Find the top person in your area for this.

I was also wondering the frequency of your Avastin. Can they give a weekly dose?

With a drop in your Muga is the Herceptin off the table for now?

I know you are in Fight Like Hell mode!
{{{hugs}}}
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 02-01-2010, 04:06 PM   #4
chrisy
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Re: The update I posted on Treatment

Sheila, I'd like to see some chemo component added in as well...maybe even your old friend Xeloda! I know you've been on and off that many times, but it worked really well and since it's been a while maybe it is worth checking out again. The cancer might have forgotten about that one.

I'll also keep my fingers crossed that maybe the rad onc will have some ideas.

You sure don't need the added stress of your dad's issues...but maybe you two can get a family discount. It does seem that there should be an explanation for the muga drop that is unrelated to the herceptin or even tykerb/herceptin together. There is a lot going on there that could have affected the results. Maybe you could get a retest, or an echo.

Hang in there, Sheila.
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 02-01-2010, 05:14 PM   #5
Gerri
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Re: The update I posted on Treatment

Shelia,

I'm happy to hear that you got approval without having to jump through hoops. Sure hope Avastin works for you again.

So sorry to hear about your dad but glad he is doing okay. Sounds like you got your fighting spirit from him!

Fight on - we are all in your corner!
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Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
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Old 02-01-2010, 06:32 PM   #6
Laurel
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Re: The update I posted on Treatment

Sheila,

Happy you got the Avastin approved easily this time and I sure pray it is mighty effective! Sorry about your pop, but I bet he is a fighter like his daughter, so no worries about him. You baby yourself, Girlfriend, you've earned the right to focus on you. How long do you think it will be until you know if the Avastin is doing the trick?
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 02-01-2010, 07:12 PM   #7
Barbara H.
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Re: The update I posted on Treatment

Hi Sheila,
Sorry that you have had such a tough week. It's bad enough to have to give up Tykerb, but more concerning is your latest Muga score. I assume that you are taking CoQu10. Hopefully, you can get your score back up in the normal range. I think that T-DM1 might be an effective treatment in the future, but your muga score needs to improve. Please know my thoughts are with you. It's unbelievable to me that those nodes can be so resistant to all the therapy you have taken.
I am also sorry to hear about your Dad.
Thinking of you!!
Barbara H.
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Old 02-01-2010, 07:47 PM   #8
lizm100
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Re: The update I posted on Treatment

Sheila-

since I'm not very knowledgeable in all the different treatments available (I know that many on this forum are all) all I have to offer is prayers and positive energy. Stay strong and keep positive thougths.

Sending (((hugs))) and a box of kleenex (as you stated you will need) your way. You are an amazing person.

Liz
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Old 02-01-2010, 07:52 PM   #9
Mary Anne in TX
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Re: The update I posted on Treatment

Hi Sheila! I'm thinking as positive as these ol' brain cells have the power to think for you! When I got kicked out of the Neratinib Trial I went to a cardiologist and after some tests, he said I could take whatever chemo Dr. K suggested. He said I had a wiring problem that wouldn't be impacted by the chemo. I'm believing that you will get the ok to continue with whatever will zap those node mets to outer space and get you back to comfy and peaceful. Much love to one very amazing woman! ma
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Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 02-01-2010, 08:26 PM   #10
Carolyns
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Re: The update I posted on Treatment

Hi Sheila,

Thank you for keeping us posted. You are always in my prayers.

Love, Hope, Peace, Carolyn
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Old 02-01-2010, 08:35 PM   #11
karen z
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Re: The update I posted on Treatment

Sheila,
Thanks for your update and glad that the Avastin was approved quickly. Please keep us updated as you have your consult(s) and review all options. Very sorry to hear about your dad.
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Old 02-01-2010, 11:14 PM   #12
Jackie07
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Re: The update I posted on Treatment

Sheila,

Thanks for the update. We will keep both your Dad and you in our thoughts and prayers.
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Old 02-02-2010, 01:42 AM   #13
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Post Re: The update I posted on Treatment

Sheila, I am happy you are able to start Avastin. I hope your nose will not bleed this time. Tell us how you feel. Hugs. Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 02-02-2010, 01:59 AM   #14
Chelee
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Re: The update I posted on Treatment

Shelia, I'm glad you didn't have to fight to get the Avastin. Although I do wonder why they aren't throwing something else in the mix as you said? Maybe they want you to see the Cardiologist first due to the drop in your muga?

I know it won't be easy with all you have going on...but when you get a chance I would go ahead and get that "consult". Even though I know what a pain it is...epecially with all you have to deal with right now. I think it would be a good idea...but I'm sure I don't have to tell you that of all ppl.

I'm so sorry to hear about your Dad. That's just too much...my heart really goes out to you. You will both be worried sick about each other, but it does sound like they took good care of him. I am glad he is doing ok under the circumstances. I sure wish you didn't have to deal with all this...but I do want you to know I will be keeping you & your Father in my thoughts & prayers.

Chelee
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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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Old 02-02-2010, 09:08 AM   #15
Shobha
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Re: The update I posted on Treatment

Sheila,

Adding my prayers and positive thoughts for you! Avastin has worked well for a couple of my friends in my local support group. Wishing you the same great results.

hugs,
shobha
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DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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Old 02-02-2010, 09:24 AM   #16
chrisy
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Re: The update I posted on Treatment

Hi Sheila,

Hope your first Avastin went well and that it is a nasty shock to the cancer. Very nasty.

Call me if you need me to send you kleenex.
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 02-02-2010, 10:08 AM   #17
MJo
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Re: The update I posted on Treatment

Interested in hearing more about your experience with Avastin. Last night in my support group a woman was talking about how excited her doctor is about Avastin's potential. Sorry you had added stress of your dad's illness. Isn't that the way life works sometimes! Go figure. Sending positive thoughts....
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
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Old 02-02-2010, 11:31 AM   #18
WolverineFan
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Re: The update I posted on Treatment

Shelia,

I am so glad to hear that you were approved for Avastin. I'm also glad you are getting in to see a cardiologist this week, am terribly sorry to hear about your dad. I know this is such a stressful time for you, but stay focused and continue to fight strong as you always do. I am thankful your dad is doing well, and will keep both of you in my prayers.
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Oklahoma

3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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Old 02-02-2010, 11:52 AM   #19
ElaineM
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Wink Re: The update I posted on Treatment

I hope your Avastin treatment went well and it will be the thing the cancer can't fight. Have you considered co enzyme Q 10 to bring up your muga score? I also hope your Dad is doing well. Keep putting one foot in front of the other.
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ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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Old 02-02-2010, 02:08 PM   #20
Rich66
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Re: The update I posted on Treatment

Mol Cancer Ther. 2009 Jul;8(7):1867-77. Epub 2009 Jul 7.
Increased antitumor activity of bevacizumab in combination with hypoxia inducible factor-1 inhibition.

Rapisarda A, Hollingshead M, Uranchimeg B, Bonomi CA, Borgel SD, Carter JP, Gehrs B, Raffeld M, Kinders RJ, Parchment R, Anver MR, Shoemaker RH, Melillo G.
SAIC-Frederick Inc, National Cancer Institue at Frederick, Frederick, MD 21702, USA.
Inhibition of hypoxia inducible factor-1 (HIF-1) is an attractive therapeutic strategy to target the tumor microenvironment. However, HIF-1 inhibitors may have limited activity as single agents and combination therapies may be required. We tested the hypothesis that HIF-1 inhibition in a hypoxic-stressed tumor microenvironment, which could be generated by administration of antiangiogenic agents, may result in a more pronounced therapeutic effect. The activity of bevacizumab, either alone or in combination with the HIF-1alpha inhibitor topotecan, was evaluated in U251-HRE xenografts. Tumor tissue was collected at the end of treatment and changes in tumor oxygenation, angiogenesis, proliferation, apoptosis, HIF-1alpha levels, HIF-1 target genes, and DNA damage were evaluated. Bevacizumab decreased microvessel-density and increased intratumor-hypoxia, but did not induce apoptosis. Moreover, bevacizumab alone caused a significant increase of HIF-1-dependent gene expression in tumor tissue. Addition of a low dose of daily topotecan to bevacizumab significantly inhibited tumor growth, relative to mice treated with topotecan or bevacizumab alone (P < 0.01). The addition of topotecan to bevacizumab was also associated with profound inhibition of HIF-1 transcriptional activity, significant inhibition of proliferation, and induction of apoptosis. Importantly, DNA damage induced by topotecan alone was not augmented by addition of bevacizumab, suggesting that increased cytotoxic activity did not account for the increased antitumor effects observed. These results strongly suggest that combination of anti-vascular endothelial growth factor antibodies with HIF-1 inhibitors is an attractive therapeutic strategy targeting in the hypoxic tumor microenvironment.


See if you can add Steph N's secret weapon, Milk thistle
3.1.4. Flavonolignans
A flavonolignan is a compound containing a flavonol linked to
a lignan molecule. Silibinin is the major active constituent of sylimarin,
a mixture of flavonolignans isolated from Silybum marianum.
In a recent study, using athymic nude mice implanted with
human colorectal carcinom HT29 cells, it was found that oral
feeding of silibinin suppressed tumor cell growth [84]. Silibinin
inhibited tumor proliferation, reducing also microvessel density.
Silibinin administration was associated with a decrease of both the
nuclear localization and protein concentration of HIF-1a.
The
mechanisms responsible for these effects are unknown.
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