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Old 04-20-2010, 10:32 AM   #21
Rich66
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Re: Need some perspective, please

Obviously anything has to be coordinated with your onc but..

If you have migraine issues, feverfew herbal is supposed to help with that. Feverfew contains parthenolide which has anticancer/cancer stem cell properties as well as calming qualities..supposedly enhancing melatonin production. Available at www.GNC.com
If common allergies might be an issue, Quercetin is supposed to help with that...along with anti-cancer/metabolism regulating qualities. I believe it is thought to help with diahrrea. Thought to increase absorption of certain nutrients and meds. Available as supplement but found naturally in onions.

There is some suggestion that Avastin, like many therapies, might be better tolerated if given lower dose/more frequently.
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Old 04-20-2010, 12:22 PM   #22
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Re: Need some perspective, please

Hi Flori! I'm sorry to hear how you've hit this rough patch. Are you trying to drink more and trying some of the fluid recipes and anti-diarrhea remedies listed here in the past? Please know that your in my thoughts and prayers. Love,,,,,,Bill
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Old 04-20-2010, 06:03 PM   #23
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Re: Need some perspective, please

Please know I am thinking of you and wishing you the
best. The others have given you good advice and food
for thought. Just know we are here for you in our hearts.
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.
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Old 04-20-2010, 11:33 PM   #24
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Re: Need some perspective, please

Flori, how goes it?
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 04-21-2010, 09:56 AM   #25
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Re: Need some perspective, please

Hi Flori,

Hope you are doing better. I am thinking of you dear girl.

all the best
caya

Sei Gesund.
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
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Old 04-21-2010, 11:38 AM   #26
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Re: Need some perspective, please

Flori--I just got back from the AACR annual meeting. Apparently Avastin seems only to
slow down progression of disease, but not change overall survival in any way.

Perhaps your oncologist knows of other means of achieving antiangiogenesis without the same side effects ie, metronomic chemotherapy, NSAIDs etc

One word of caution (and unfortunately I could not split myself into six clones and attend all sessions that interested me): there are those who have observed a rebound of tumors after discontinuing avastin --originally described in mice, don't know how often in humans--felt to happen because although avastin kills the blood vessel lining cells of the blood vessels feeding the tumor, it does not destroy the framework of the scaffolding for the blood vessels, so once it is stopped the scaffolding is already there which means it take much less time, effort and energy to reconstitute a new vascular system to feed the tumor.(like leaving the foundation and bearing walls rather than destroying an entire house, it is much quicker,easier to rebuild the house)

Someone from Genentech talked about the phenomenon and whether it was
found in humans and what could be done about it. I knew I would be sorry if I didn't attend--that someone would expect me to be able to help with that knowledge, but knew most talks were taped and could be bought through a company for listening afterwards ($399 for the entire meeting, but I met someone perhaps willing to split costs). If I get the tape I will listen to the talk and update you.

With that in mind, it might theoretically be best to add something else antiangiogenic when stopping avastin, although I generally agree with Becky that it is generally a good principle to stop one thing at a time to see what is causing a problem.

I also met someone from the NIH who is interested in having her2+ patients
for a trial he is doing with a radionucleide (radioactive-labelled compound) which is targetted with herceptin which seeks out and identifies (and perhaps someday treats) residual her2+ residual disease.

There were loads of new drugs being found useful in her2+ disease, and very hopeful reports with panher blockers.

Hopefully the cavalry (of new drugs) is coming over the hill just in time to be available to help if you find your present combo is not all it can be.

Best of luck!
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Old 04-21-2010, 12:04 PM   #27
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Re: Need some perspective, please

Tying in with what Lani saw at AACR, more on Angiogenesis, Avastin and other approaches:

http://her2support.org/vbulletin/sho...218#post221218
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Old 04-21-2010, 03:28 PM   #28
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Wink Re: Need some perspective, please

So sorry you are still under the weather. If you can't make it to the doc's office for hydration keep drinking water, tea, juice, soup and eat alot of fruit-------That will help with the hydration. I know salt can increase blood pressure, but it might help to put a little pinch of salt in a glass of warm water and drink it slowly for hydration. Oranges and bananas have potassium. Instant hydration and instant Gadorade !!
We are cheering for you !! Take good care of yourself.
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Old 04-21-2010, 06:51 PM   #29
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Re: Need some perspective, please

Flori, Flori, Morning Glory, you better listen to Sister Elaine. Don't make me come out there.
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Old 04-22-2010, 08:31 AM   #30
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Re: Need some perspective, please

hot off the press:
Eur J Clin Pharmacol. 2010 Apr 17. [Epub ahead of print]
Incidence and risk of significantly raised blood pressure in cancer patients treated with bevacizumab: an updated meta-analysis.
An MM, Zou Z, Shen H, Liu P, Chen ML, Cao YB, Jiang YY.

R&D Center of New Drug, School of Pharmacy, Second Military Medical University, 325 Guo He Road, Shanghai, 200433, People's Republic of China.
Abstract
PURPOSE: Bevacizumab is a humanized monoclonal antibody targeting vascular endothelial growth factor. The aim of this study was to gain a better understanding of the overall incidence and risk of significantly raised blood pressure in cancer patients who receive bevacizumab therapy. METHODS: We performed a meta-analysis of relevant randomized controlled trials (RCTs) identified in PubMed, Cochrane library, Embase, and American Society of Clinical Oncology conferences. Overall incidence rates, relative risks (RRs), and 95% confidence intervals (CIs) were calculated using a random-effects model. The primary clinical endpoint was significantly raised blood pressure (grade 3 or above). RESULTS: A total of 12,949 cancer patients with a variety of solid tumors from 19 RCTs were included in our meta-analysis. The overall incidence of significantly raised blood pressure was 8% (95% CI 6-10%) among patients receiving bevacizumab. Bevacizumab treatment was associated with a statistically significant increased risk of developing significantly raised blood pressure (RR 5.38, 95% CI 3.63-7.97). The RRs of significantly raised blood pressure in patients receiving bevacizumab at 5 and 2.5 mg/kg per week were 7.17 (95% CI, 3.91-13.13) and 4.11 (95% CI 2.49-6.78), respectively. Among cancer patients, those with renal cell carcinoma (RR 13.77, 95% CI 2.28-83.15) and breast cancer (RR 18.83, 95% CI 1.23-292.29) who received bevacizumab at 5 mg/kg per week had a higher risk of developing significantly raised blood pressure. CONCLUSIONS: Among the patients included in the trials analyzed in this meta-analysis, the addition of bevacizumab to cancer therapy treatments significantly increased the risk of significantly raised blood pressure. The risk may be dose-dependent and vary with tumor type.

PMID: 20401474
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Old 04-22-2010, 05:38 PM   #31
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Re: Need some perspective, please

Flori,

Try a bit of dried seaweed crumpled and littered over your salad, or in some miso soup. I have found that my blood pressure rises as I do not seem to have enough Iodine in my diet. I do not use salt to cook or add to foods, but with all the sodium in our diets I never considered I'd need some Iodine, but apparently it isn't added to salt they way it was in the past. I had a BP that was creeping up to where yours is ever since chemo. I finally added the Iodine after some research on elevated BP and also take a herbal supplement called Hawthorne. One 500mg cap daily has my bp back to normal. Also, Flori, pain will shoot your BP into the stratosphere.

Hoping and praying you get answers and relief.
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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

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I think I just might hang around awhile....

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Old 04-23-2010, 08:16 AM   #32
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Re: Need some perspective, please

I think the virus part has passed, no fever and my headache is almost 100% gone. I'm sure in a few days I'll start to feel my energy return. After day 2 of hydration, my b/p was 120/72.

I am taking a chemo break for a month. After 2 days of sitting for hydration and talking to my doc about my quality of life of late, my frustration with side effects and feeling like crud, she says that it would do me some good to just take a break. She said that since my disease is mostly stable, it would not hurt to take a month off. I am going to focus on the time off, and what it can mean to me in getting my "me" back. I will be able to step up the exercise, eat better, and do a bit of travel.

Thank you for your input and support. I printed out every response, cut them out, and taped them alongside my mirror. (Well some of them I just printed out to discuss with my doc, Lani, Brenda and Rich!).

It really does help to remind yourself to focus on the good. As Chris said, one step, one breath at a time.

With gratitude,
Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 04-23-2010, 09:59 AM   #33
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I am very happy to hear you are feeling better Flori. Enjoy your month vacation from treatment. You deserve it !!
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Lucky 13 !! I hope so !!!!!!
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Old 04-23-2010, 12:53 PM   #34
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Smile Re: Need some perspective, please

Hi Flori,

Enjoy that month long chemo break. And eat some chocolate, it's good for you...

xo sweetie.

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
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Old 04-23-2010, 01:52 PM   #35
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Re: Need some perspective, please

Glad to hear that you're feeling better, Flori! It sounds like you and your onc. are in agreement that a break will do you some good. Sounds like a great chance to do all the things you mentioned, and maybe you can re-post that pic of your daughter's tattoo while you're at it. It's a classic.
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Old 04-24-2010, 02:24 PM   #36
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Wink Re: Need some perspective, please

Flori,
So glad you are feeling better. A break will help with everything. Just don't do what I do and try to "do it all" at the same time. Rest, eat well and enjoy!
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Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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Old 04-25-2010, 08:41 PM   #37
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Re: Need some perspective, please

Just adding some hugs and prayers for you!!!!
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st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
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Old 04-25-2010, 10:08 PM   #38
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Re: Need some perspective, please

Flori,

Enjoy the off month: recharge, refuel, regroup, and redraw the battle plan...
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Old 04-26-2010, 02:20 PM   #39
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Re: Need some perspective, please

Just wanted to chime in and say that I hope you are feeling better, Flori. And I wanted to offer you some words of encouragement from one of my heroes:

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.

Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial

Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED

Send me a PM if you'd like to follow my journey on Caringbridge.
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Old 04-26-2010, 06:37 PM   #40
lkc Gumby
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Re: Need some perspective, please

Hi Flori, I've never written directly to before, But have often read your posts. This one hit me, as I felt your" desperation"
I am hoping you have just a simple virus and are feeling much better soon!
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Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
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