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Old 06-19-2013, 08:18 AM   #1
NEDenise
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Brain MRI - Hmmmm

Well my friends...

The goo is not all gone.
But, it is a pale shadow of it's former self! Not smaller really, but so much less dense that it's hard to see unless you know where to look. (which I do, at this point!)


So, that means the Avastin is doing what we hoped...it's just not finished yet. The plan - though the goofy tumor board will probably recommend the craniotomy option again when they meet on Thursday - the plan that we will actually be implementing is to continue Avastin, and scan again in two months.

I am so fortunate, blessed even...that my surgeon is actually a pioneer in the use of non-surgical treatment of these sorts of brain "issues". He only came to Penn about 3 weeks before my brain met diagnosis. Coincidence? Or God taking really good care of me? I wonder...

Dr. Brem did caution me yesterday that often microscopic BC cells "hide" in the necrotic areas and sort of "get used to" the Avastin...then start to grow and cause new problems. I assured him that in that case...my Lapatnib would just step in and squash them!

He has pronounced me his "STAR PATIENT" and asked me record a video clip to include in the presentation he's giving this week to a group of medical and radiation oncologists. My case is apparently exactly what he's been trying to convince oncs to do.

Now, even though I am not happy about my piggy little face being captured on video...I agreed...because it struck me that if even one of those oncologists actually listens to what I say...and that spares one patient from unnecessarily harsh, or dangerous treatment...my pride just wasn't that important. (Besides, he promised NOT to post it online anywhere!)

In the clip, I asked the doctors in the audience to please try all the possible targeted treatment options before recommending the "nuclear options" like whole brain radiation, and craniotomy. In the clip, I told them, "What goes on in my brain, makes me who I am. I trust my doctors to protect that. There are worse things than being dead. Honestly, if I can't be me anymore...I don't want to be alive."

Now, on a lighter note...when I viewed the scan images...I found two very interesting things. I think they may explain my sense of humor...and why I seem to laugh an awful lot. I've circled them in red...so you could see them too! If you look closely, you'll see that both Mickey Mouse, and some smiling guy wearing sunglasses are hanging out in my brain. I sooo hope people in heaven can still check in on us...because this is just the sort of thing Chrisy would have cracked up over!

CTs tomorrow! Prayers welcome on that front too!
Thanks for checking in on me! You guys rock!
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 06-19-2013, 10:17 AM   #2
'lizbeth
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Re: Brain MRI - Hmmmm

Denise,

Today - your are my hero!

I am so pleased for you that Avastin is helping. And that you are brave enough to make a video with puffy checks. I'm sure if we do chinese face reading puffy cheeks mean something very positive!

You are a STAR! Shining bright, and funny too.
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Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
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Additional treatments:
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ENERGY Study, UCSD La Jolla

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Old 06-19-2013, 12:17 PM   #3
caya
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Thumbs up Re: Brain MRI - Hmmmm

Denise,

You are definitely a "STAR." So glad the Avastin is working. Praying for continued good results for you 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 06-19-2013, 01:50 PM   #4
Redwolf8812
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Re: Brain MRI - Hmmmm

Love that star brain of yours!

- Penny
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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 06-19-2013, 04:10 PM   #5
StephN
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Re: Brain MRI - Hmmmm

Hi -
Glad there is some real evidence of improvement other than you just saying so! I am so familiar with those MRIs! Seen literally dozens of mine by now. But don't recall seeing the Great Mickey in any of mine. Maybe you were meant to be a Mousketeer!

However, in the second scan it looks like a grasshopper's head to me. So, I hope it will just hop away with the rest of that fading gunk.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 06-19-2013, 05:40 PM   #6
Laurel
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Re: Brain MRI - Hmmmm

Aw shucks, Denise, that's just about as good a bit of news as anyone could ask for! I bought a bottle of GooGone last week and thought of you, naturally. It didn't do what I had hoped so I am glad the Avastin is a better producer!

Thanks for being brave, bright, and brilliant you (thanks to your Mickey Mouse brain!).
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Smile On!
Laurel


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

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

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Old 06-19-2013, 06:14 PM   #7
Andrea Barnett Budin
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Re: Brain MRI - Hmmmm

Way to go NEDenise!!! Love your attitude. And your language.

You nailed the message, broadcast to many...

In the clip, I asked the doctors in the audience to please try all the possible targeted treatment options before recommending the "nuclear options" like whole brain radiation, and craniotomy. In the clip, I told them, "What goes on in my brain, makes me who I am. I trust my doctors to protect that. There are worse things than being dead. Honestly, if I can't be me anymore...I don't want to be alive."

I see Mickey Mouse for sure! That must be your laugh button, not sure about the smiling guy with glasses, but like Rorschach pix, what I see is a smiling doggie. Very cute btw.
Thanks for the red line. How do you do what you do???!!!

I was not happy with Dr. B's microscopic BC cells "hide" in the necrotic areas and sort of "get used to" the Avastin...then start to grow and cause new problems...

DO NOT LET HIM PLANT A SEED IN YOUR BRAIN! I had lobular bc, which hides, I know, but... Your brain goo is fading slowly but surely, maybe trying to hide in the shadows, but again...

My necrotic areas in my liver viewed as diminishing bc tumors (ea measured and reported precisely w/ea ev 8 wk scan) were viewed by 2 totally unrelated, independent radiologists. I had 3 oncs, for some reason. I'd found 1 on Long Island where I lived, another in Westchester and another in Manhattan. Westchester onc asked me to bring in my scans for HIS radiologist to read. That radiol had worked at Sloan Kettering. He said what he saw he did not think were tumors, but the dead remains of tumors, cyst-like, filled w/fluid. He believed what he was looking at were the dead remains of tumors.

Manhattan onc, lo and behold, asked me to do the same thing. Bring scans for HIS radiologist to read. And he said -- exactly the same thing.

I stopped Taxotere (after 9 mnths, fluid around my heart and around my lungs, dragging my tail) -- hoping Herceptin alone would keep me stable.

Those dead remains of tumors are still visualized (since '99) and exactly the same. They call them STABLE.

Do not fret. Say good bye and good riddens to your uninvited guests. They are going down and out. And you had the perfect answer as well, if Avastin fails, you have backup!!!!!!!!!!

Thanks for keeping us in the loop, amazing lady!

Oh, just scroplled down and see guy in sunglasses. Looks like a skull to me. Like a dying entity. And he is smiling. Must be very tired fighting against you. Glad to go. Happy for him... And for YOU!!!

Much love,
Andi
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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...
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Old 06-19-2013, 06:16 PM   #8
Paula O
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Re: Brain MRI - Hmmmm

How funny to see Mickey mouse in that brain scan! I'm glad you are doing so well, Denise.

Paula
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Old 06-19-2013, 07:00 PM   #9
KDR
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Re: Brain MRI - Hmmmm

Denise
You are truly an amazing patient. I wish you the best in sweeping out the bad cells altogether. I can't wait for the day when we can say, "Oh, I just got dxd with HER2," and we treat it just like an infection, with a pill waiting at the pharmacy to get it out--for good.
Yours,
Karen
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Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 06-19-2013, 07:28 PM   #10
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Re: Brain MRI - Hmmmm

Denise,
So glad you updated us! We got ya on the prayer front. You rock!
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4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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Old 06-19-2013, 07:45 PM   #11
karen z
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Re: Brain MRI - Hmmmm

Star patient AND in a helpful film. All of this sounds great.
Glad to hear positive news. Don't know quite what to say about Mickey Mouse seeking refuge in your head but we all lead rather interesting lives.
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Old 06-19-2013, 09:59 PM   #12
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Re: Brain MRI - Hmmmm

Hi Denise,

My prayers are with you tomorrow and always. Gods blessings to you and your family. Peace my friend, Nancy
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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 06-19-2013, 10:21 PM   #13
SusanN
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Re: Brain MRI - Hmmmm

Already praying for you girl...love that you were able to SPEAK and be heard...!!! Couldn't had been said better from a "Star!!"
Hugs to you... always filled with HOPE!!
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10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 06-20-2013, 01:32 AM   #14
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Re: Brain MRI - Hmmmm

Denise,

So glad to hear your goooo...d news. And I'm sure having Mickey residing in your brain is a good sign! You go girl!

They'd probably find Goofy in my brain.......
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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
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 06-20-2013, 07:15 AM   #15
Vicky
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Re: Brain MRI - Hmmmm

Denise- you are indeed a star and a treasure all tied up into one! I couldn't agree more with your wish to hold off on whole brain or surgery! ME TOO! So thankful to see someone who get exactly how I feel and I am lucky as well in that my docs have supported me with targeted therapies.

Now I'll be curious to see what resides in my brain- besides my "blobs" as I call them

Thanks for keeping us updated- prayers for the CT coming your way!
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3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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Old 06-20-2013, 07:17 AM   #16
ammebarb
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Re: Brain MRI - Hmmmm

So good to see your post and hear that the Avastin is doing its thing! Loved that Mickey has taken up residence.

So glad you got to express your thoughts for the Doc's video. You are absolutely right...if it helps one other person with a course of treatment, it was worth it.

Sending best, best, best wishes for continued success with Avastin. You are ever in my prayers.

Barb A.
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Old 06-20-2013, 09:41 AM   #17
KsGal
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Re: Brain MRI - Hmmmm

This is wonderful news...((hugs)) Thank you for being brave and starring in the video. Im sure it will help far more than one person.
Leave it to you to even make me laugh with your brain scan...definitely Mickey Mouse. The second one tho...to me it looks like an earthworm with big googly eyes and a graduation cap on. Im just saying...
As someone who went through WBR, I agree with your feelings on it. If I had been presented any other options, I certainly would have looked into to those before going through this. Sadly, I was not, but maybe with more doctors like your doctor and more videos like the one you made will bring these other options to the forefront.
Prayers to you and yours, as always. Keep squashing those cells!
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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 06-20-2013, 09:44 AM   #18
Andrea Barnett Budin
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Re: Brain MRI - Hmmmm

SQUOOSH ON, NEDDY! MUSH THE GOOSH/AKA GOO...

Thinking of you...............

ANDI
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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...
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Old 06-20-2013, 10:25 PM   #19
BonnieR
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Re: Brain MRI - Hmmmm

I cant think of a better spokesperson than you! So articulate. I love the message you want to express. And your doctor for being so sensitive to that. You both are making a difference. Thats what we are put here to do
Keep the faith.
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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
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Old 06-21-2013, 12:18 AM   #20
Pamelamary
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Re: Brain MRI - Hmmmm

Denise, you can always make me laugh - and it's obviously "built in"! So glad to hear the Avastin is working and I think you are a hero for championing the less intrusive options. Sure that video won't be posted? Not even here?
Much love..... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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