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Old 09-11-2010, 07:59 AM   #1
TriciaK
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Would appreciate prayers

I haven't been posting often but I check in when I can and remember you all in thoughts and prayers. Some of you know my current situation---after fighting BC for 25 years, I am now facing my 4th cancer mets. They are back in my right lung, her2positive; there is one larger nodule and many small ones. We've been watching them for several months as my tumor markers (ca27/29) have been rising steadily (132 in July). The original BC in 1985 was in the right breast, then returned to my spine in 1990. Then I was NED for 15 years, until tests after a heart attack in 2004 showed that the cancer was back, now in my right lung, and now her2positive. I had 15 months of herceptin along with 6 months of navelbine. Then my ejection fraction dropped to 30 and my onc took me off herceptin. I've had 5 pretty good years, except for congestive heart failure (under control with meds), another mild heart attack I didn't know I had that showed up on an angiogram in 2009 and various other health problems (a triple bypass in 2006, scoliosis from the 1990 spine mets, fibromyalgia, gall bladder surgery and so on). An echocardiogram a month ago showed that my ef is now 45-50, so my oncologist doesn't feel I should go on herceptin again. I had two chemo treatments with navelbine alone, and then stopped so I could go on a long-planned cruise in Hawaii with my husband and oldest son and daughter-in-law. It was wonderful, though I mostly just enjoyed a lot of peace and rest. after arriving back I had blood tests on Tuesday, Sept 5, and was scheduled to see my onc for results and to plan further chemo the next day. Instead I wound up in the ER with severe chest pain and difficulty breathing. I was afraid it was either another pulmonary embolism (I'd had one 2 years ago) or another heart attack. After a long day of tests and treatments, it looks like it isn't a PE, and although my heart tests were worrisome enough to do an angiogram, it wasn't a heart attack. In fact my caradiologist told me in the cath lab that there was actually some improvement over the 2009 angiogram. He also did a carotoid artery echo and a regular echo with contrast. THe hope is that my ef may have risen enough so my onc will prescribe herceptin. I see the cardiologist Monday and the oncologist on tuesday and should then know what to do next. I feel I want herceptin, even though my heart is not strong. I am asking you for thoughts and prayers and any advice or experiences you may have. I question whether anything but herceptin or tykerb can stop the BC now. (Can't swallow large pills and have a power port so prefer herceptin.) I will keep you informed. Thank you so much for all the love and caring you have shown me and for prayers and suggestions now. Hugs, TriciaK
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Old 09-11-2010, 08:17 AM   #2
vlcarr
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Re: Would appreciate prayers

Dear Tricia,

You have always been such an inspiration to me. You demonstrate such courage and always such a positive attitude. I always enjoy reading your posts.

I don't have any advice, as I've never had to deal with what you are going through. You are a wise lady and I know you will figure out what is best, and I'm sure others will have some great advice.

I just wanted you to know that I'm keeping you in my thoughts and prayers.
__________________
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Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
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Old 09-11-2010, 08:27 AM   #3
bejuce
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Re: Would appreciate prayers

Dear Tricia,

I'm sorry about this latest setback. You are strong and will be able to ride through yet another storm with flying colors. Not sure what to say in terms of medical advice, except that if I remember correctly, Herceptin can be given when the ef is 50 and above. You are on the borderline, so I'd listen to what your medical team has to say. Have they offered you anything else besides Navelbine?

I'll be praying for you,

Marcia
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 09-11-2010, 08:37 AM   #4
Jackie07
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Re: Would appreciate prayers

Tricia,

And the dosage of Tykerb can be adjusted accordingly:

DOSE MODIFICATION GUIDELINES

Modify dose for cardiac and other toxicities, severe hepatic impairment, and CYP3A4 drug interactions. The concomitant use of strong CYP3A4 inhibitors and inducers should be avoided. Please see complete Prescribing Information.

Sending you good vibes.
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Old 09-11-2010, 10:00 AM   #5
krisvell
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Re: Would appreciate prayers

Tricia; You are in my thoughts and prayers that you to continue on a positive course. Your personal story has given me great hope and inspiration. I am routing for you.

Kris...
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06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 09-11-2010, 10:10 AM   #6
Julie2
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Re: Would appreciate prayers

Tricia,

You are in my prayers and thoughts. I wish everything turns out to be OK.

Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 09-11-2010, 10:15 AM   #7
Lani
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Re: Would appreciate prayers

I had a friend forward on the articles about troponin and herceptin cardiotoxicity

Hope they help!!!
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Old 09-11-2010, 10:20 AM   #8
lexigirl
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Re: Would appreciate prayers

Tricia,

Saying prayers for your heart to become stronger each day. I am very hopeful that you will be able to have the herceptin txs needed to beat the beast back.

Lexi
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Old 09-11-2010, 10:30 AM   #9
Ellie F
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Re: Would appreciate prayers

tricia
You have my prayers and good wishes that your heart will become stronger then you can start herceptin again.

Ellie
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Old 09-11-2010, 10:31 AM   #10
ElaineM
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Wink Re: Would appreciate prayers

Yes. By all means a prayer is coming your way from me.
I also have my fingers crossed for you. You are definitely one of my role models, because you have survived breast cancer more than 25 years even though you have had other health problems.
Tykerb pills can be cut in half with a pill cutter that is available at most pharmacies.
I also wonder if a person can put the number of pills prescribed after they are cut into a small food proccessor or blender with some warm water and liquified?
They are not supposed to be taken with food, but if they can be cut and liquified that might make it easier to take them.
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Old 09-11-2010, 10:57 AM   #11
Rich66
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Re: Would appreciate prayers

Tricia,
Have they considered low dose/metronomic Xeloda and/or Cytoxan? Has there been a recent biopsy to see if there are estrogen receptors or activity now? Metformin has low side effects and might help.
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Mom's treatment history (link)
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Old 09-11-2010, 11:02 AM   #12
Pam P
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Re: Would appreciate prayers

Tricia - You are such an inspiration to me in the way you handle each hurdle. I pray that you and your doctors get a good and safe treatment plan in place for you now.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 09-11-2010, 11:14 AM   #13
StephN
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Re: Would appreciate prayers

Dear Tricia -
Was thinking about you and about to put out a "hell-o-o-o" to find out how your trip went.

That part sounds great, and exactly what you wanted.

The lung mets part is another story. I can understand your wanting to stick with the targeted therapies in light of your age and other health issues. You have managed so well all these years.

I am wondering if you could get BOTH Herceptin and a lowered dose of Tykerb as a two pronged approach. It seems to me that this idea with 2 drugs in combination and low toxicity would be your best bet to shut down these mets.

I don't know what you consider as "large" for pills. But I think Xeloda and Tyklerb are not very big. Your doc or his nurse will know the pill sizes.

Sorry for the "episode" with short of breath. But the flip side of that was all the tests that show that you can take more treatment.
__________________
"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 09-11-2010, 12:30 PM   #14
Mary Anne in TX
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Re: Would appreciate prayers

My thoughts are like Steph's.
Hey, could you mash up that Tykerb and take it in chocolate?????
We did it as kids, right???
I'm prayin' and believin' for ya.
luv, ma
__________________
MA in TX.
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 09-11-2010, 12:40 PM   #15
tricia keegan
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Re: Would appreciate prayers

Dear Tricia,

I was so sorry to log on and read this news this evening, prayers are assured and you'll be in my thoughts daily my friend.

I know you're one tough lady and will get through this, I'm keeping everything crossed that ef will allow you herceptin or tykerb x
__________________
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 09-11-2010, 02:01 PM   #16
Delaney
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Re: Would appreciate prayers

Tricia, thinking of you. Just to let you know, tyverb and xeloda together are shrinking my lung mets, without herceptin. I have never had a steady run on herceptin because of my e/f.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 09-11-2010, 04:38 PM   #17
CarolynME
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Re: Would appreciate prayers

Tricia,

I am thinking of you and praying for you. It sounds like you have received some great options from other members to discuss with your doctors. I am hoping you will receive a sucessful treatment that is safe for your heart.

Delaney - it is great to hear the Xeloda/Tykerb combination is shrinking your lung mets.
__________________
1/10 Diagnosed with IDC; 3.7 cm tumor
3/10 Left Radical Masectomy; 2 /16 nodes positive - Grade 3 ER+/PR-/HER2+++
4/10 BRCA1 and BRCA2 both negative
4/10 Pet Scan showed another node .07mm positive on the internal mammary area
4/10 ALLTO Trial - randomized for Arm 4 - Taxotere/Carboplatin and Herceptin only (no Tykerb) Began 6 cycles Taxotere/Carboplatin (every three weeks) and Herceptin weekly for eighteen weeks and then every three weeks until the end of April 2011
Radiation to begin 9/2010
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Old 09-11-2010, 05:16 PM   #18
Barbara H.
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Re: Would appreciate prayers

Hi Tricia,
My thoughts and prayers are with you. I have been using the Herceptin/Tykerb combo for almost a year now. My CEA is less than .5 and CA 27/29 is 18. This combination is very easy for me. I also take COQ10. You may be able to cut the Tykerb in half, but you can't grind it up or take it with food. They are not too difficult to swallow. The regular dosage is 5 pills, but I only take 4. I eat vegetables, salads, and fruit, and very rarely have bathroom problems. I couldn't deal with that issue since I teach, and it is often difficult to leave my classroom.

Unfortunately, you still need treatment. Some Her2 patients only take 3 Tykerb tablets. Perhaps you could do that, and with close monitoring also do Herceptin. A cardiac exercise program for your age group might also help.

Again, I hope the best for you. You will alwaysl be an inspiration to me.

Kind regards,
Barbara
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Old 09-11-2010, 05:30 PM   #19
Patb
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Re: Would appreciate prayers

I am praying for you and sending healing thoughts
daily. You are such a fighter and I know you can do
this again. I am glad you got rest of your trip.
patb
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Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 09-11-2010, 05:51 PM   #20
Chelee
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Re: Would appreciate prayers

Tricia,
I'm sure sorry to hear about your trip to the ER. But it sounds like it may of been a good thing in the long run because you got all the medical test and procedures out of the way. You are well prepared now for your onc this wk...and I'm sure the articles Lani sent will be of help. I have a feeling your medical team along with your input will figure out your next step. With all you've been through I just know you will come up with the right course of treatment. Your such a strong warrior women and such an inspriation to me.

I will be keeping you in my thoughts and prayers.

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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