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Old 08-30-2012, 03:41 AM   #41
NEDenise
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Re: Gammaknife, Tykerb...reality check

Good Morning!
In the spirit of "leaving a record" for others who walk this weird road in the future...

Steph...Oh my! Thanks for reminding me that the Decadron fatigue was on its way! Unbelievable...unless you've lived it!

So...
I'm now 3 days without steroids...completely weaned.
Fatigue...I haven't been so tired since chemo!
I also started back to work full time on the same day I stopped the steroids, so...that's a factor too.

I was so exhausted by the end of the first day, my core muscles literally ached...just from being "upright" all day. I came home...ordered dinner out...took a nap for 3 hours...then went to bed!!

I've also had a mild headache since stopping the steroids, but honestly, I don't think it has anything to do with my brain "issues"...it's hot here, so I think I may be a little dehydrated...and I'm tired...which can give you a headache too.

And...though my face is starting to deflate...I still feel like I look ridiculously "fat" when I look in the mirror. Sure hope that resolves before I meet my new students next week! Vanity, thy name is Denise!

Mostly...I am so excited to get my "real" life back...the one where I'm so busy being Denise, that I don't think about cancer trying to kill me!!

But, I have to admit...sometimes...my mind still wanders to that dark place...where the Tykerb isn't working...and mets are taking over my precious brain...killing me while I'm trying to get my life back. It's not a happy place... And, I never used to go there...ever. I'm blaming the steroids.

I'm hoping that when I'm not so tired all the time...I'll get my unfailingly positive outlook back.

In the mean time...thanks for checking in on me.
Echo tomorrow (fingers crossed...worried because I've been feeling kinds "winded" this week)
Check in with rad onc who did the gamma next week.

Happy Labor Day, Friends!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 08-30-2012, 03:57 AM   #42
JennyB
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Re: Gammaknife, Tykerb...reality check

Lots of love to you and sincerely hoping you stay well away from the dark place that will mess with your beautiful psyche given half the chance

Jenny
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Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 08-30-2012, 03:59 AM   #43
Mary Anne in TX
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Re: Gammaknife, Tykerb...reality check

I can't think of any better medicine for "getting back to me" than a room full of kids! During treatment I went to my grand daughter's kindergarten graduation. Her friends told her that I was nice, but they didn't like my "hair do"! I guess a scarf on a bald head wasn't their cup of tea! I laughed and laughed realizing that kids hold that mirror before our eyes and keep reality coming. My guess is that the kids will love watching the "puffiness" disappear. Those kids will see your heart above all else. Best wishes and many prayers, ma
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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 08-30-2012, 03:25 PM   #44
twosenuf99
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Re: Gammaknife, Tykerb...reality check

Denise
I just logged back on after weeks of being gone. Been thinking about you alot and wondering how you are doing. Sorry you are going through all this. Totally glad you are pushing through and going back to work. Hugs to you!

Tracy
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Baseline Mammogram November 2010, found 2 suspicious calcifications (right side).
Second Mammogram April 2011, found 2 masses in the right breast, 1 in the lymph node and 1 in the left breast.
3 Biopsies May 11, 2011
Diagnosed right Invasive Ductal Breast Cancer which spread to my lymph node 5-13-2011.
Between Stage 2 and 3 with tumors grade III. ER/PR- but Her2neu+++
PET Scan clear
Breast MRI showed 2 masses in left, 5 in the right and 2 in the lymph node.
Biopsy of left mass benign
Joined clinical trial which required second biopsy of one of the right masses
Port placed May 27, 2011
Began Chemo (Taxol, Herceptin and Tykerb) on June 1, 2011 - September 12, 2011
Bi-lateral Mastectomy with reconstruction (expanders) October 3, 2011
FEC 12 weeks
Radiation 6 weeks
Herceptin 8 months finish September 2012
Exchange surgery August 3, 2012
Been NED since October 2011
Lymphedema right arm since Nov 2013
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Old 08-30-2012, 10:24 PM   #45
Pray
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Re: Gammaknife, Tykerb...reality check

Hi Denise,

Your about to not have anytime to go to the dark place with how busy the school year is! I do hope it is a wonderful funfilled year for you and your kids at school and home. Gods blessings to you little Sis. Because of you I just might go back to work in January! You inspire me so!
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 08-30-2012, 10:44 PM   #46
StephN
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Re: Gammaknife, Tykerb...reality check

Sorry that fatigue hit you broadside, but that is what happens to most of us in the situation with decadron.

Maybe you can give yourself some time over the long weekend to let your body come back to itself - although it is a bit of a process.

I always said the drug was way worse than the treatment for brain mets. I had terrible pains in my legs from weaning just a little too fast for me. Had to readjust a little and that helped.

Like a hangover that won't go away! But that WILL pass in due time.

Decadron is like being on uppers and downers when you are not.
__________________
"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 08-31-2012, 01:51 PM   #47
Lani
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Re: Gammaknife, Tykerb...reality check

In the spirit of "leaving a record" for others who walk this weird road in the future...

You did--and a beautifully described one!

Hope this helps nix/calm lots of future anxiety!
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Old 08-31-2012, 02:10 PM   #48
KaiM
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Re: Gammaknife, Tykerb...reality check

Denise, a room full of kids sounds like great 'medicine'! many people have asked me how I handle my diagnoses and treatments with two very little ones with me all the time... I always say, 'I don't know how people handle it without?' Kids have a magnificent way of keeping you and your brain too occupied to live in 'cancerland.' They fill your days with laughter and hugs too!
__________________
9/11 - dx 3 mnths after giving birth to my 2nd child. (not a clogged milk duct) ER/PR- HER2+++
10/11 - Initially staged at 2b after unilateral mastectomy
11/11 - CT scan 4 weeks later found spots on bones and liver (crap!) Stage 4
12/11 - starting TCH
5/12 - STABLE. stoping TCH after 6 months and continuing Herceptin with Tykerb and Xgeva
8/12 - STABLE, but I'm calling it NED because all they see is bone scaring!
11/12 - STABLE
2/13 - STABLE
6/13 - STABLE
9/13 - STABLE
12/13 - STABLE
3/14 - STABLE
6/14 - STABLE
9/14 - STABLE
12/14 - STABLE
...Continue Herceptin and daily Tykerb and scans every 4 months
1/16 - STABLE
Mom to Audrey (8 yrs) and Hudson (4)

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Old 09-01-2012, 01:34 AM   #49
KsGal
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Re: Gammaknife, Tykerb...reality check

I was just thinking about you this morning, and came on site to read your funny posts. I love your positive attitude, and how you take even the icky things and make them seem not so bad. You are such an encouragement to others (including myself), that we can get through these crazy treatments with our sense of humor and positive outlook intact. Big hugs to you Denise...here's to today being even better than the last, and that it continues that way for a long, long time.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 09-05-2012, 06:07 PM   #50
NEDenise
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Re: Gammaknife, Tykerb...reality check

Hi Friends,
Just a quick update...
Went back to the classroom! Exciting! Fun! I didn't realize how much I missed it...till I met the kids and got started! But...

Oh my goodness! I'm exhausted...every day! I haven't been awake past 9:00 once this week!
And my feet and ankles are sooooo swollen and sore! That has to be related to all the meds...I never had any issue with that before.

And...twice now, I've had to make what Chris calls the "fun run". It was at two different times of day, and doesn't seem to be related to my diet in any way. But hey, two days out of 21...that's pretty good, I think.

I've started having a cracker or small cookie when I take my Tykerb, and it's helped with the nausea very nicely. I know my tummy is supposed to be empty...but Tykerb on a totally empty stomach means a day full of nausea for me. Literally, when I don't eat a little something with the med...I'm nauseous for the entire day. I'm going to check it out with the onc when I see her...but it's really a quality of life issue at this point. What's the use of killing off the tumors in my brain, if all I can do is lay around trying not to toss my cookies?!

I see the docs tomorrow...I'll keep you posted.
Thanks for all the prayers...please keep them coming...I'm not sure what's going on inside of me.
Denise

Oh! I forget to mention...my face, while not back to its normal size...I don't look like the circus fat lady any more! Small steps....silver linings!
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 09-05-2012, 06:32 PM   #51
Vicki revised
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Re: Gammaknife, Tykerb...reality check

Denise, Tykerb is fickle. When I took it in the spring I had no side effects. I've been on it over a week now with intense nausea, cramps and sudden intense diarrhea several times day and night. Are you taking Zofran? I've added lots of ginger to my diet and it seems to be helping. Fresh ginger snaps from the bakery are wonderful.
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Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 09-05-2012, 06:59 PM   #52
hutchibk
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Re: Gammaknife, Tykerb...reality check

I was on Tykerb for almost 3 years, 18 mos w/Xeloda, 18 mos w/ Herceptin... It ended up not fickle for me. When I dropped Xeloda for Herceptin, things got even better.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 09-05-2012, 09:23 PM   #53
Pray
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Re: Gammaknife, Tykerb...reality check

Denise, I hope all goes well for you at the Dr's tomorrow. Gods blessings to you funny lady! By the By are you a Striesand fan?
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-06-2012, 03:58 AM   #54
Paula O
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Re: Gammaknife, Tykerb...reality check

I bet you're a fabulous teacher! I'm glad you are back with the kids in your classroom again.

Hope the echo results are great and the dr's visit goes well. Are you any less winded?

Denise, if you are comfortable sharing, how did you discover the brain mets? Was it a routine brain scan post treatment or were you having symptoms? You may have shared it and I missed it--if so, sorry about asking for a repeat.

I don't know if you are propping up your feet but that can really help with edema in the lower extremities. You might put a foot stool under your desk at school for the times you are sitting and elevate your legs at home too. Watching your sodium intake can also be of help.

Rooting for ya!

Paula
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Old 09-06-2012, 04:16 AM   #55
Sandra in GA
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Re: Gammaknife, Tykerb...reality check

HI Denise,
I am so glad you are back in the classroom. My only advise is to keep Immodium with you at all times and take two at the first sign of trouble. Hope you feel better soon.
Sandra
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Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 09-06-2012, 04:46 AM   #56
Redwolf8812
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Re: Gammaknife, Tykerb...reality check

So glad to hear from you and that you're doing well! Thank You, Lord!

:-) Penny
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...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)

Penny

July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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Old 09-06-2012, 10:16 PM   #57
SoCalGal
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Re: Gammaknife, Tykerb...reality check

How many pills are you taking? Been on Tykerb for about 5 years. Used to take a full dose. Now I've settled on 3 per day and it seems to work just fine. I didn't think that nausea was a side effect of tykerb. I wonder if an acid blocker would help calm your insides down. I know for me, prednisone makes me feel nauseated. I wonder if all the cortisone set up the sour stomach? Please check with the doc on food plus tykerb. I think it really affects how it is absorbed. Am all for QOL being first and foremost! Hang in there!
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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, to remove skin mets. Not able to get clear margins. So schedule another 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 – cut out, cut out, 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. New onc orders PET/ct & Brain MRI to re-stage me.
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 trial but then 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. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
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 GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
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 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
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 Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
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 and due for MRI brain check (check please!).
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: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
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
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation one=her2+ er/pr negative. AUGUST hoping to start clinical trial if they would just get it together and accept me.
CuckFancer!! 11 years MBC.
Aug 27, 2018 - start clinical trial ZW25 aka this better fu*king work
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Old 09-07-2012, 03:37 AM   #58
NEDenise
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Re: Gammaknife, Tykerb...reality check

You guys are so sweet! I appreciate all your advice and concern more than you probably realize!

Vicki and Flori - Checked with onc...she definitely doesn't want my stomach to have ANY food in there! Sooooo...she prescribed Zofran.

Nancy - who ISN'T a Steisand fan, at some level? What a gift that voice is!

Paula - sit during the school day? Hahahaha! Elementary teachers almost never sit. But, believe me, once I'm home...my recliner is my best friend!
My echo (last Friday) was excellent...so any "windedness" must be from the weight I've gained!
And, my friend, you can read all about this ridiculous brain met journey on the thread "Brain Mets *&%$*" back in July. I'd post it here, but I can't get the link to work!

Sandra - I stash Immodium like squirrels stash nuts!

Brenda - I'm reeeeaaaaaly hoping that once I get all the timing correct...my experience with Herceptin and Tykerb will be like yours.

Penny - Thank you, Jesus indeed!!

Saw the Gamma Rad Onc yesterday. He's optimistic that they were able to zap and kill all the active disease, AND, he doesn't think the BC had a chance to spread to the lining of my brain (lepto meningeal disease) so...that was a relief, for now anyway.

Off to school! I haven't been this excited to go to work in years!! God is Good!

Hugs all around!
Please keep praying that the rad onc is right, and that no new lesions pop up between now and the November MRI.

Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 09-07-2012, 10:13 AM   #59
Debbie L.
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Re: Gammaknife, Tykerb...reality check

Thanks for the update, Denise. As everyone else has said, it's always good to hear from you.

Re: empty stomach and tykerb, I remember something in the last few years about a few studies that showed food in the stomach INCREASED the absorption or availability of Tykerb, so that (in theory) a smaller dose would be used if Tykerb were taken with meals. But the counter to this was, if I recall correctly (always a big IF) -- that all the studies and calculations had been done with empty stomachs and thus it would be to too iffy to to adjust the dosing regime now, without basically starting from scratch. I wonder why they chose empty stomach back in the beginning.

Sorry I don't have time to look into this and supply references right now, but maybe someone else is interested enough to enlighten us.

Debbie Laxague
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Old 09-10-2012, 04:05 PM   #60
embur102
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Re: Gammaknife, Tykerb...reality check

Denise,

I haven't checked the board in a long while, but you are always on my mind. After reading these most recent posts, I have to say, you, Girl, are one DAMNAMAZING woman!!! I promise to never whine about my weany side effects again.

You are truly inspiring!! Keep rocking!!
Prayers, thoughts, healing energy and hugs galore
xoxoxoxoxoxoxoxoxoxoxoxoxoxox
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