HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 04-21-2013, 07:34 AM   #1
NEDenise
Senior Member
 
NEDenise's Avatar
 
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
Cool NEDenise vs NEDecadron Smackdown!

Sounds waaay more exciting and fun than it really is...but I got your attention!

So...since several of you have so sweetly PMed...patiently waiting for an update...which by the way I am so touched by...I thought I'd better just jump in and post.

I'm okay. Not great, but not terrible either. Cancer is definitely not winning...but Decadron and brain swelling are making things pretty crappy. I have scans tomorrow (Monday), and I see the neurosurgeon on Tuesday. But honestly...I already know what's up...my brain is swelling because the irradiated lesion is BIG, and my poor body just doesn't know what to do with all that dead tissue.

So...the fluid builds up
I start to lose control of my balance...
my right hand starts to shake
I end up in bed...laying around for hours/days...feeling nauseous, tired, and head-achey...

I take more Decadron for a few days...
The swelling in my brain goes down
but the swelling in my face and neck increases (you can't imagine what I look like right now, and vanity will not allow me to post a photo...but trust me when I tell you that I don't even recognize my face in the mirror)
I'm embarrassed to admit it...but there are days I just want to stay home, so I don't have to risk meeting anyone I know, looking the way I do.
And...of course, the longer I'm on these steroids, the more out of breath, fat, and weak-legged I get.

Brain mets are not for the faint of heart. I'm not expecting any great revelations from the scans...and I know already that surgery to remove all the dead tissue is ABSOLUTELY NOT an option. The whole gooey mess is just too close to my brain stem...and the surgeon has been clear from day one that cutting there would almost certainly kill me. I've asked everyone on my med team if there are other options for reducing the swelling...and so far...nothing.

So, friends, here I am...8 months after the GammaKnife procedure...battling the swelling...and nursing a codependent love/hate relationship with Decadron. It keeps me from seizures or stroking out...but it also makes me look and feel like a freak! (Grotesquely bloated is the phrase that comes to mind!)

Now...for the positive spin we all know floats in my heart and my crowded brain!
I'm not dead. (yay me!)
I'm not planning to die soon. (and we all know how stubborn I can be!)
Decadron...though the side effects suck...works.
I don't have any cognitive issues at all.
My family is awesome, and I get to spend every single day with them.
My body is NED...and I think my brain is too.
My sense of humor is still intact...and I laugh often.
On bad days, retail therapy works very well on the internet.
I have my beautiful friends here...to whine to, lean on...and draw strength from!
And...I know that God has a plan for me. I just hope it's one I'm going to be happy with...

So...surprise, surprise...a looooong post from Denise. Sorry. But it's been a while and there was a lot to share.

Please keep the prayers, healing energy, good juju, and love heading my way. It helps more than I ever would have imagined.
Sending love to all of you!
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
NEDenise is offline   Reply With Quote
Old 04-21-2013, 08:16 AM   #2
KG1993
Senior Member
 
Join Date: Sep 2011
Posts: 93
Re: NEDenise vs NEDecadron Smackdown!

Denise,
Hang in there. You have a great attitude.

Does your scan show the swelling or do you just go by the symptoms you are currently having? (remember my mom is also having a lot of the same problems)

KG
KG1993 is offline   Reply With Quote
Old 04-21-2013, 08:16 AM   #3
KG1993
Senior Member
 
Join Date: Sep 2011
Posts: 93
Re: NEDenise vs NEDecadron Smackdown!

PS I wish my Mom had the positive outlook you have.
KG1993 is offline   Reply With Quote
Old 04-21-2013, 08:58 AM   #4
jacqueline1102
Senior Member
 
Join Date: Apr 2012
Posts: 175
Re: NEDenise vs NEDecadron Smackdown!

Hello Denise,

You are an incredible young woman. I marvel at your humor and insight. My thoughts are with you often. What I find most amazing is you are going through such a difficult time and yet I find that you so often posts words of comfort for others. You are a peach, dear Denise.

Take good care,

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
jacqueline1102 is offline   Reply With Quote
Old 04-21-2013, 09:36 AM   #5
Paty
Senior Member
 
Paty's Avatar
 
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
Re: NEDenise vs NEDecadron Smackdown!

Dear Denise,

Thank you for the update. I understand that sometimes you do not even feel like writing. And here you are, giving us some of your time to keep us posted. I wish you the best for the scan results tomorrow. I will be praying for those results and for your well-being. You have an excellent attitude and that is a great example to many. I wish that the swollen areas go back to normal again soon and they do not interfere on the vanity issues (LOL). Wishing you the best Denise. Please forgive me if I do not write much, but I always read your posts. God bless you dear.
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
Paty is offline   Reply With Quote
Old 04-21-2013, 10:03 AM   #6
carlatte7
Senior Member
 
Join Date: Jun 2012
Posts: 129
Re: NEDenise vs NEDecadron Smackdown!

Oh, Denise...you remind me of an old VBS song..."theres no one else, just like you! Theres no one else, just like you! You're you! You're you! Theres no one just like you!" Thanks for the update and prayers for something that will reduce the s/e of the 'roids for ya.
__________________
Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year anniversary of last Herceptin.
Sept'14- bloodwork good, return to onco in 8 months.
Oct'14- surgeon will see me in April '15. Moving on.
May '15- mammo unchanged, keeping same schedule. Tumor markers soon and if all is well port comes out.
July '15-tumor markers normal. See onco in a year. Appt. for port end of month. First grandchild born July 1st- for today, life is good.
carlatte7 is offline   Reply With Quote
Old 04-21-2013, 10:37 AM   #7
BonnieR
Senior Member
 
BonnieR's Avatar
 
Join Date: Jun 2007
Posts: 2,210
Re: NEDenise vs NEDecadron Smackdown!

I just love you and that attitude of yours! Keep the faith
__________________
Bonnie

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
BonnieR is offline   Reply With Quote
Old 04-21-2013, 11:13 AM   #8
Andrea Barnett Budin
Senior Member
 
Andrea Barnett Budin's Avatar
 
Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Re: NEDenise vs NEDecadron Smackdown!

Well DENISE!

You NED DENISE have this canser thing down. I am glad you're okay, which coming from you means as you say, not great, not
terrible. On those days, I used to say when people asked -- tomorrow will be better. And that is what I'm hoping for you. We will all await your report back from the scans and neuro guy (I hate when the doc's nomenclature is his area followed by surgeon. Cause what do they believe in?! Surgery. But I hear your emphatic ABSOLUTELY NOT happening and that sounds like just the way I'd respond to such an idea.)

Yes, your body is confused by the new goop/dead tissue in your brain. Tell it to settle down. Dead tissue is a good thing. Is there hope of it shrinking on its own? My dead remains of tumors in my liver just hang there it seems. Each set of scans shows stable. I reassure my liver all the time that these new neighbors are harmless and to chill out. Perhaps a chat with your brain might help. Couldn't hurt.

So it's the fluid build up that is resulting from the necrotic tissue that's the issue, causing the imbalance? Steroids help that, so you have no choice (if there are no other options) to go w/that. You can't be falling and breaking other body parts. So bed rest at dizzy times is essential to your well-being.
(I had no balance problems midst my 10 yrs of Vit H, yet managed to skid as I stepped off a curb into a giant gravel-filled pot hole with a smaller pot hole at the far end where my foot got wedged into a position no ballerina could accomplish. That was followed by surgery w/pins and plates and 3 mnths of a cast above my heart, which isn't easily accomplished. That was followed by 6 mnths of physical therapy cause my brain, as docs warned, forgot how to walk. Talk about balancing problems. I sponge-bathed in front of the sink while standing on the 1 foot I was allowed to bear weight on. So not easy...)


I have a friend with some weird affliction, autoimmune nonsense that forces her to infuse weekly lest she get sick every 8 days, and she is on steroids, forever. So her usual petite self has been replaced with this very round version of her old self. But her new self is full of a shining Spirit, a happy, loving, smiling Soul who is grateful to be alive. DENISE YOU ARE SO MUCH MORE BEAUTIFUL THAN YOU THINK YOU ARE. Once you open your mouth, your True Self just sparkles all over the place and makes everyone want to gather round and be near you.

I know that unfamiliar face in the mirror is horridly disconcerting. I dab makeup at it for camouflage, struggle to get my curly locks to go where I want them to vs places where they conspire against me, put on earrings and something comfortable and yet stylish -- and face the world -- anyway.

Denise, you totally rock. PRINT OUT YOUR POSITIVE SPIN AND POST IT AROUND YOUR HOUSE. Keep it in your beautiful face all day, every day. (My favs from that list are the obvious. Your sense of humor is well in tact. I can sense you laugh often. And you cause others to laugh along with you. What a gift! Your cognitive abilities are apparent in your fabulously written posts every one! And I completely relate to your retail therapy by Internet. It's so wonderful to shop around from site to site for the best buy, to figure out how not to pay for shipping and then have surprise packages arrive at your door, like it's a party gift.

God's plan is your plan. For you to continue to shine through this dismal time and come out a newer, better, more evolved and even more enriched human being. I send you my prayers as I send them up, I am forward healing energy and empowerment to you as my fingers dance on the keyboard. Keep venting and let your radiance shine through. You are textbook perfect as a patient and I hope will soon only visit docs cause you're due, cause you'll be fixed and will be living as NED Denise.

Love to you my dear Sister,

Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
Andrea Barnett Budin is offline   Reply With Quote
Old 04-21-2013, 12:57 PM   #9
jml
Senior Member
 
jml's Avatar
 
Join Date: Dec 2006
Posts: 415
Re: NEDenise vs NEDecadron Smackdown!

Denise,
I am at a loss for words.
Other than to offer you love, hugs, comfort & prayers.
You ARE keeping the Faith my friend.
Hang on tight!

Jessica
jml is offline   Reply With Quote
Old 04-21-2013, 01:30 PM   #10
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,144
Re: NEDenise vs NEDecadron Smackdown!

Hang in there Denise! Remember words of wisdom from TriciaK, even the bible states "and it came to pass" - not "it's here to stay".

Awaiting your results as anxiously as you are dear one.

Love and hugs from me.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 14 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
Becky is offline   Reply With Quote
Old 04-21-2013, 03:05 PM   #11
LoisLane
Senior Member
 
LoisLane's Avatar
 
Join Date: Mar 2010
Location: Thornhill Ontario Canada
Posts: 266
Re: NEDenise vs NEDecadron Smackdown!

Thinking of you dear Denise and sending many prayers and healing thoughts to you!!
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara

November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2

January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
LoisLane is offline   Reply With Quote
Old 04-21-2013, 03:42 PM   #12
ElaineM
Senior Member
 
ElaineM's Avatar
 
Join Date: May 2006
Posts: 3,142
Wink Re: NEDenise vs NEDecadron Smackdown!

You sure have had your ups and downs. I know things are not pleasant for you right now, but please know all of us are hoping you will be feeling better soon.
Take good care of yourself and keep putting one foot in front of the other.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
ElaineM is offline   Reply With Quote
Old 04-21-2013, 04:52 PM   #13
ammebarb
Senior Member
 
Join Date: Mar 2009
Posts: 508
Re: NEDenise vs NEDecadron Smackdown!

Prayers for you daily, Denise. I'm really glad you took the time to update us. Sending best wishes for tomorrow and then your appointment. Hugs.

Barb A.
ammebarb is offline   Reply With Quote
Old 04-21-2013, 05:02 PM   #14
Bunty
Senior Member
 
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 461
Re: NEDenise vs NEDecadron Smackdown!

Denise, I'll say it again, but you are amazing. I say that quite a bit on this forum, and to others, but it's true. The spirit that you, and many others have, is incredible.

Sorry you continue to struggle with the side effects, but I believe that it will come to pass as well. Your attitude and the love surrounding you, is and will be a great strength to you!

Sending you a healing hug for the scans.....

Cheers Marie xx
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Bunty is offline   Reply With Quote
Old 04-21-2013, 06:03 PM   #15
sassy
Senior Member
 
sassy's Avatar
 
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
Images: 4
Re: NEDenise vs NEDecadron Smackdown!

You always let that "light" shine Denise!

I know that positive Attitude will stand you in good stead dealing with the SE's and kicking cancer to the curb.

Prayers for more good news and continued improvement.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
13 YEARS NED!
sassy is offline   Reply With Quote
Old 04-21-2013, 06:50 PM   #16
Laurel
Senior Member
 
Laurel's Avatar
 
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 1,969
Re: NEDenise vs NEDecadron Smackdown!

Sounds waaay more exciting and fun than it really is...but I got your attention! Yes, you certainly did, you little stinker, you!

So...since several of you have so sweetly PMed...patiently waiting for an update...which by the way I am so touched by...I thought I'd better just jump in and post.

I'm okay. Not great, but not terrible either. Cancer is definitely not winning...but Decadron and brain swelling are making things pretty crappy. I have scans tomorrow (Monday), and I see the neurosurgeon on Tuesday. But honestly...I already know what's up...my brain is swelling because the irradiated lesion is BIG, and my poor body just doesn't know what to do with all that dead tissue. You know, Denise, here in Pa we just let the vultures take care of our road kill. Saves $ and feeds the birds at the same time.....how brilliant. What we need is something akin to a vulture that goes in and cleans up the goo. Decadron reduces the associated swelling the goo causes....hmmm. Some M.D. needs to see this most excellent analogy and get back into the lab!


So...the fluid builds up
I start to lose control of my balance...
my right hand starts to shake
I end up in bed...laying around for hours/days...feeling nauseous, tired, and head-achey...

I take more Decadron for a few days...
The swelling in my brain goes down
but the swelling in my face and neck increases (you can't imagine what I look like right now, and vanity will not allow me to post a photo...but trust me when I tell you that I don't even recognize my face in the mirror)
I'm embarrassed to admit it...but there are days I just want to stay home, so I don't have to risk meeting anyone I know, looking the way I do.
And...of course, the longer I'm on these steroids, the more out of breath, fat, and weak-legged I get. I may be revealing my bias here, but my bet is you are still quite beautiful...altered perhaps, a new face in the mirror which is disconcerting, but beautiful, smiling, weary perhaps, haggard on the off days, but...alive, breathing, functional, cognizant, HERE. And just lovely.

Brain mets are not for the faint of heart. I'm not expecting any great revelations from the scans...and I know already that surgery to remove all the dead tissue is ABSOLUTELY NOT an option. The whole gooey mess is just too close to my brain stem...and the surgeon has been clear from day one that cutting there would almost certainly kill me. I've asked everyone on my med team if there are other options for reducing the swelling...and so far...nothing.

So, friends, here I am...8 months after the GammaKnife procedure...battling the swelling...and nursing a codependent love/hate relationship with Decadron. It keeps me from seizures or stroking out...but it also makes me look and feel like a freak! (Grotesquely bloated is the phrase that comes to mind!) You are in good company among many newly annoited "freaks". Just think of the newly burned, disfigured, limbless souls in Boston. They are still beautiful and breathing. You are so wonderful on the inside that I know you glow on the outside. These many changes that present themselves challenge our sense of who we are, I understand a bit with my gray hair and double chin, but the inside? Now that is only getting more interesting, growing, surrendering, stalwartly forging forward, trying to be grateful, and gracious....

Now...for the positive spin we all know floats in my heart and my crowded brain!
I'm not dead. (yay me!)
I'm not planning to die soon. (and we all know how stubborn I can be!)
Decadron...though the side effects suck...works.
I don't have any cognitive issues at all. Clearly not!
My family is awesome, and I get to spend every single day with them.
My body is NED...and I think my brain is too. Me, too!
On bad days, retail therapy works very well on the internet. Are you a QVC gal, too?
I have my beautiful friends here...to whine to, lean on...and draw strength from! And your many friends here!
And...I know that God has a plan for me. I just hope it's one I'm going to be happy with...Funny how He never consults us on His plans for us. I think this odyssey and adventure of yours has great purpose. You have blessed me enormously, more than you can imagine, and I am just one. When you arrive at the pearly gates decades from now that crown on your head is going to weigh a ton. Better start neck exercises now is my sage advise. Back in the 80s I used to exercise to a Jane Fonda tape. There was an exercise where you inclined your head forward, back and side to side. In my twenties I thought it a ridiculous waste of time, but now let's just say I get it! And to think the things I used to say to poor Jane as I did those butt lifts! I repent of the awful things I said.....! She did help my butt. Now it sags into my shoes.....

So...surprise, surprise...a looooong post from Denise. Sorry. But it's been a while and there was a lot to share.

Please keep the prayers, healing energy, good juju, and love heading my way. It helps more than I ever would have imagined. You got it, kid!
Sending love to all of you! Right back at ya!
__________________

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

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

Laurel is offline   Reply With Quote
Old 04-21-2013, 07:19 PM   #17
mamacze
Senior Member
 
mamacze's Avatar
 
Join Date: Sep 2005
Location: Berlin, Connecticut
Posts: 625
Re: NEDenise vs NEDecadron Smackdown!

Yes, you have my attention as well; 200%!!
Happy to hear you are OK. Sometimes OK is the best we can do given the circumstances; and honey, you are right; you have some circumstances.
I hate that you just feel lousy. I also hate that we can not wave a magic wand and give you the gift of health or at least the feeling of good health for even just a smidge of time.

So instead, good juju, prayers, chocolate, lovin' up hugs are wrapping loving arms around you. Attack that retail therapy with a vengeance. When you feel like doo-doo then a little purchase on QVC is a small price to pay for a good mental health lift.
XOXO
Love and Hugs,
Kim (from CT)
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only, waiting for re-enroll in U of W vaccine clinical trial for "booster".
mamacze is offline   Reply With Quote
Old 04-21-2013, 07:21 PM   #18
mamacze
Senior Member
 
mamacze's Avatar
 
Join Date: Sep 2005
Location: Berlin, Connecticut
Posts: 625
Re: NEDenise vs NEDecadron Smackdown!

PS - Becky, thank you for remembering AND reposting the wisdom from TriciaK

"even the bible states "and it came to pass" - not "it's here to stay".

Love it; brought tears to my eyes...so much truth.
XOXO
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only, waiting for re-enroll in U of W vaccine clinical trial for "booster".
mamacze is offline   Reply With Quote
Old 04-21-2013, 07:30 PM   #19
conomyself
Senior Member
 
Join Date: Sep 2012
Posts: 111
Re: NEDenise vs NEDecadron Smackdown!

You are amazing Denise!

In a short time I'm sure you'll be telling us the body "took out the trash" and you're feeling wonderful!!

Please keep us posted -- lots of good thoughts and prayers going your way!

Rachael
__________________
7/30/2012 Diagnosed with metastatic breast cancer
8/3/2012 CT scan mets to liver (major!!), lungs, spine, and skin
8/8/2012 Biopsy results: invasive ductal carcinoma
ER+/PR+/HER2+ amplification 4.8 (whatever that means)
8/13/2012 Brain MRI (clear); bone scan verified CT scan
8/14/12 started Taxotere/Carboplatin/Herceptin, 2 rounds (added Neulasta after 9/4 treatment)
9/4/12 CA 15-3: >3000
9/15/12 CA 15-3: 840
9/15/12 started Taxotere/Perjeta/Herceptin, 4 rounds (no Neulasta)
10/29/12 CT scan showed dramatic improvement in all areas - largest liver met 2.5 cm, largest lung met 10 cm
12/17/12 Started Perjeta/Herceptin, 2 rounds
12/17/12 CA 15-3: 17 Yay!!!
1/21/13 CT scan showed improvement - largest liver met 1.9 cm, largest lung met 2 mm
1/29/13 CA 15-3: 12 Started Herceptin only
3/12/13 CA 15-3: still 12 yay!! Back to Perjeta/Herceptin
3/29/13 CT scan more improvement - largest liver met 1.2 cm, some lung mets disappeared!
3/7/14 started Tamoxifen
6/27/13 - 1/2015 CT scan stable
Began a diet of only single ingredient foods and went nearly NED excepts for some tiny lung spots - ask me if you want to know more...
1/2015 - 1/2017 CT scan stable
conomyself is offline   Reply With Quote
Old 04-21-2013, 08:59 PM   #20
caya
Senior Member
 
caya's Avatar
 
Join Date: Jan 2007
Location: Thornhill, Ontario Canada
Posts: 2,303
Re: NEDenise vs NEDecadron Smackdown!

Thanks for the update dear Denise - you are certainly a Warrior Woman. You have such a great attitude, I am in awe of you.

Keep well, good luck with your scans tomorrow (praying for great results) and a good discussion with the doc the next day.

all the best
caya
__________________
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
12 Years NED!!
caya is offline   Reply With Quote
Reply

Tags
brain mets, brain swelling, decadron, gammaknife

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 12:45 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2019, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter