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Old 03-01-2012, 05:50 PM   #1
CoolBreeze
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Hail Mary Pass - dropped the ball

I had scans a week ago and apparently, something is growing on my liver, where I had the ablation.

For newbies, back in October I had the left lobe of my liver removed and a spot of cancer ablated in the right lobe that was too deep to resect.

I guess they didn't get it all. The spot in the right lobe appears to be back.

So, here I am with no treatment plan. I got a terrible case of c-diff at the end of November and spent time in the hospital with that - I went septic and nearly lost my colon. My colon is still recovering but not 100%. So, they aren't giving me chemo and now the cancer is growing back. I am on herceptin but apparently it isn't doing much for me.

I am going to have a PET to be sure but I don't think it's possible that it's anything else. I would love to hear that they would ablate it or radiate it again, but I also can't take antibiotics because of c-diff so not sure how they'll manage.

It makes me really sad that I did such a big surgery and didn't get anything from it. It was my hail mary pass so I don't regret it but I wish I'd been one of those who had a liver resection and got years.

I'm not on a hormonal - tamox didn't work for me. My doctor is considering putting me on letrozole but I'm weakly ER+ and he says sometimes those AIs can stimulate the ovaries in women who are just barely into menopause, as I was. But, we need to do something, yes?

Just thought I'd update you all.
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 03-01-2012, 06:00 PM   #2
Rich66
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Re: Hail Mary Pass - dropped the ball

"sometimes those AIs can stimulate the ovaries" They could probably monitor circulating markers for estrogen/estradiol. maybe Faslodex would be a better option..or even with an AI.
It seems possible SIR therapy (beads) might be of use on the liver. Not sure if they do that with one lobe though. Also TACE.

Maybe Herceptin + Tykerb + endocrine options above? Shouldn't be hard on immune system.
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Old 03-01-2012, 06:04 PM   #3
chrisy
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Re: Hail Mary Pass - dropped the ball

Oh, sad can't even describe it I'll bet. Don't give up on the long term success - it could still happen. The complication of not being able to take antibiotics is a problem, but maybe they could do a targeted radiation - like cyberknife - to do the "cleanup" which might not require antibiotics.

Systemically, you might ask about adding tykerb to the herceptin; sometimes the combination can work even if the single agent doesn't.

Try to keep your chin up, you've worked so hard to get to this point. Don't give up.
Chris
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 03-01-2012, 06:20 PM   #4
BonnieR
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Re: Hail Mary Pass - dropped the ball

"But, we need to do something, yes?"...YES!! I am afraid I dont have the knowledge to make specific suggestions. But I wanted to say I share your disappointment and feel your sadness. Time for a new game plan, to use the sports analogy. From the replies you have already received, it sounds like some options may be available that have not been tried yet. Meanwhile, I will give my standard sign-out, Keep the faith. Always.
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 03-01-2012, 06:22 PM   #5
Pray
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Re: Hail Mary Pass - dropped the ball

Ann, I am so sorry! I wish I could offer you great advise. Please know that you are in my prayers. You truly amaze me with your fighting spirit. Gods blessings to you and your family.
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Old 03-01-2012, 06:31 PM   #6
CoolBreeze
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Re: Hail Mary Pass - dropped the ball

My oncologist has not recommended anything, which surprises me. He's pretty forward thinking but I came up with the AI idea. He said maybe he'd put me back on Navelbine as it's the easiest to take but he wasn't definitive about it. I wish he'd brainstormed more ideas but maybe he wants to wait for the PET to be 100% sure. I hadn't thought of tykerb, duh.
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http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 03-01-2012, 08:44 PM   #7
ElaineM
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Wink Re: Hail Mary Pass - dropped the ball

Wow !! I am sorry to hear something is growing in your liver. I am glad Chrisy responded. Maybe some other folks with "liver" experience will respond since i don't know anything about liver mets. Meanwhile adding Tykerb might be a good idea if the AIs are not an option.
I think if I were in your situtation I will eat plenty of foods that are good for the liver while the docs decide what to do. Kale, beets, broccoli, onions and garlic are some that come to mind. I would ask if I could take milk thistle which is also good for the liver.
I hope a solution is just around the corner. Take good care of yourself and hang in there.
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ElaineM
12 years and counting
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Old 03-01-2012, 09:55 PM   #8
chemteach
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Re: Hail Mary Pass - dropped the ball

I'm sorry to hear there's something on your liver. I don't know enough about those treatments mentioned to suggest anything at all. You've been through a lot, more than most, I think. Keep going, keep looking and asking and thinking of treatment options. It sounds like you have some great people on your side. Thoughts and prayers are with you.
__________________
7/25/2011 Diagnosed DCIS and IDC on left from biopsy.
8/9/2011 Bilateral mastectomy
7mm clear margins Stage 1b, grade 3, 0/4 SLN ER- PR+ Her-2/neu +
9/19/2011 Started TCH every 3 weeks, TC for six cycles, Herceptin for 1 year

May all of your dreams bloom like daisies in the sun....
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Old 03-02-2012, 12:20 AM   #9
michka
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Re: Hail Mary Pass - dropped the ball

Ann, I am so sorry to read your post. First I hope that the Pet will not confirm the scan. Sometimes it can take months for the liver to recover from surgery and I had traces on the pets and MRIs from the operation that disappeared slowly. If you cannot have chemo and you only have one spot can they go after it with RFA? Because if it is the same spot and if you have no new one it means they didn't get everything out the first time but not that the cancer is spreading so your strategy may still be very good. Thinking of you Ann. Hugs. Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 03-02-2012, 12:26 AM   #10
Rich66
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Re: Hail Mary Pass - dropped the ball

ttp://her2support.org/vbulletin/showthread.php?p=221053#post221053
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Old 03-02-2012, 12:35 AM   #11
StephN
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Re: Hail Mary Pass - dropped the ball

Hello Ann -
I was about to write what Michka said, as I recalled that she had some doubtful scans and then things began to shrink and look better.

Perhaps this is the same thing that can often happen in the brain after radio therapy of some kind. There will still be some flair or what looks like a lesion. I will be surprised if it truly is the tumor coming back at this point.

It is hard to be patient in these situations to wait and see, especially if you are only getting Herceptin, which I am sure IS helping against further progression. When you don't have other spots to measure, the good news is that they are NOT there.

Take care of the c.diff. and hopefully that can happen soon.
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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 03-02-2012, 06:02 AM   #12
NEDenise
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Re: Hail Mary Pass - dropped the ball

Oh, Ann,
I'm so sorry you've gotten such disappointing news. I'll be thinking of you and hoping for good news, and an effective treatment plan in your very near future.
Hugs,
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 03-02-2012, 07:25 AM   #13
caya
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Re: Hail Mary Pass - dropped the ball

Ann, I'm sorry for your disappointing news, but still cheering you on, as I'm sure we all are.

I see you've had some good advice already, hopefully more will be posted soon.

all the best
caya
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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
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Dignosed 10/16/06, age 48 , premenopausal
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Old 03-02-2012, 08:59 AM   #14
Debbie L.
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Re: Hail Mary Pass - dropped the ball

Ann, I'm sorry to hear your news, and I send lots of good thoughts. Maybe we could call it just a fumble at this point? No one knows the future, as others have said so well already.

Just a thought -- since the dang C-diff damage is what's limiting your options right now -- is there any possibility that hyperbaric O2 treatments would help the colon heal more quickly? I don't know much about this but I keep hearing about it for tissue healing in general. I do get some google hits, talking about hyperbaric O2 for radiation-induced colitis so it does seem it might be effective deep inside.

Lapatinib is not easy on the gut for most -- something else to consider.

After the PET, regardless of whether your onc has formulated a plan or not, could be a good time for a 2nd opinion.

I know you'll keep us posted. Lots of good thoughts to you. How are you feeling (in any way that you care to answer that questions -- physically and/or emotionally)?

Love,
Debbie Laxague
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Old 03-02-2012, 12:05 PM   #15
Rich66
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Re: Hail Mary Pass - dropped the ball

Good points above about possible necrosis as opposed to new growth.

what do you mean by colon recovering? Digestive function? Would probiotics (florastor) help?
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Old 03-02-2012, 12:10 PM   #16
rhondalea
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Re: Hail Mary Pass - dropped the ball

I have no useful input, but please know that I'm thinking of you and hoping that it's just a residual effect (scar tissue, maybe?) of the ablation.
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Old 03-02-2012, 02:50 PM   #17
Mtngrl
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Re: Hail Mary Pass - dropped the ball

Ann,

I'm so sorry. After all you've been through that must be just devastating.

Sending positive energy. . . .
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_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 03-02-2012, 03:58 PM   #18
chekmark
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Re: Hail Mary Pass - dropped the ball

Ann,
It saddens me to read your post. Are they sure it is what it is? Maybe its scar tissue since you just recently had your surgery. It is so disappointing when we put every ounce of our being into treatment, put our bodies thru chemo and the everlasting effects only to find out that it did not work. I saw my oncologist yesterday and she was telling me about so many improvements in research and makes things sound so promising and then I read your post. I pray that you continue to stay positive through out this. I know how difficult that is. I am at a loss for words and cannot even imagine how you are feeling right now but like the others have said, you have been thru so much and except for the c-diff have done pretty well. One day at a time. I have no advise and I wish I did since I really am uneducated in the liver and I am still trying to figure out this whole her2 thing. We may never have the answers that we want but you always have everyone here for all the support you could possibly need. We are cheering for you and hope that the next news will be good news. Prayers and more prayers to you and all on this site. I wish I could I say the right thing to make it all better. Please keep us posted.
Blessings, Darlene
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 03-02-2012, 04:12 PM   #19
bejuce
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Re: Hail Mary Pass - dropped the ball

Can they biopsy the area to determine if it's indeed a cancerous growth? Hope it's just scar tissue or necrosis as mentioned above. Either way, hoping for a successful resolution soon.

Hugs,

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

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


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Old 03-02-2012, 09:10 PM   #20
Jackie07
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Re: Hail Mary Pass - dropped the ball

Ann,

Your doctor will figure out a good approach soon. Hang in there. We are all rooting for you.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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