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Old 09-27-2012, 03:54 PM   #21
dawny
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

My good thoughts are also with you Jessica
Dawn
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Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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Old 09-27-2012, 04:01 PM   #22
Bill
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

My thoughts and prayers are with you, Jessica. You hang in there. You're a good fighter! I can tell by the way you straddled that dog and didn't get bit. He was scared of your spirit.
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Old 09-27-2012, 04:06 PM   #23
Bill
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

(you didn't get bit, did you? Because if you did, I'd feel bad about my last post. I can tell you're a fighter, though, to even try something like that. You're proud and full of courage.)
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Old 09-27-2012, 04:27 PM   #24
pwiswell
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

You summed up my own feelings so adequately. I suspect many of us on here share the same feelings and fears. I have not experienced NED since 2006 but have just started on Xeloda and Tykerb and hoping these are the drugs that will do it. You are in my prayers and many of us will be there with you tomorrow. Good luck and please let us know what you find out so we can all celebrate with you.
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Old 09-28-2012, 09:41 AM   #25
karen z
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

Jessica,
More and more positive thoughts.
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Old 09-28-2012, 02:43 PM   #26
jml
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NED in HEAD, but not in Body:( Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

Hi Friends~
Thank you for sharing your words and feelings with me. There is definitely power in numbers and I can feel each every one of you.
I'm so heart broken about Brenda (Hutchibk) and with my scan situation I could hardly bring myself to log on, but knew I had to be back in touch with you, my sister warriors.
So, YES! NED in the HEAD! Thrilled with this news of course, but a little disappointed that the Rad Onc told me that the reason I have a bald'ish path down the center of my skull is bc the WBR can permanently destroy the hair follicle. Uh, NO, I don't recall you telling me that, Doc! I knew that I would lose my hair, but had no idea that it was potentially permanent!?!!? In the scheme of things, this is small potatoes, but I know you all understand the desire & need for the return to normalcy, which to me, includes having hair.
As for the PET of my body, it does look really good, with no other disease other than a lymph node in my chest that has increased in size (~dime) and SUV=13. Initially this was not extremely alarming to me, disappointing yes, but not particularly alarming. Especially because I have had much scarier results with much more significant disease load.
But then I realized the implications of the location of this growing node - it lies adjacent to the Superior Vena Cava, the main vein that returns blood to the heart from the upper body. If this node continues to grow, compress, obstruct the vessel, something called SVC Obstruction, the heart would not be able to withstand that. That would be very bad. There's no indication that the node is currently in contact/compressing the SVC, but my resting heart rate has quite high, WNL, but much higher than norm for me @90bpm's.
Ultimately, my docs say they're not alarmed and have scheduled an echocardiogram for Nov 1, if that's any indication how not so urgent the situation is. I think for my peace of mind I'm going to ask to have it scheduled sooner. Knowledge is Power.
In the meantime, I'll continue on my current regimen of oral Methotrexate 4 days/week, q3week Herceptin and a small change to the oral Cytoxan from daily to every other day. We're trying to give my bone marrow a chance while I stay on continuous treatment, rather than running it down then taking a 2 week chemo break. I need to be on sustained treatment like I was the first 6mos get this node knocked down. But you have to keep your body healthy enough to withstand the chemo in order for the chemo to work. Right now I would not be a candidate to change regimens, if there were any options, because my counts are so low.
I wish it were as simple as eating more spinach and a steak, as many have suggested, but 10years of chemo makes for sluggish, fatigued bone marrow
Right now, just trying not to let the snowball gain momentum and will continue fighting hard.
You all are a treasure to me and I ask that we all now turn our love and prayers towards Brenda.
May she always be in peace and comfort.

Keep the Faith~

Jessica
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Old 09-28-2012, 06:05 PM   #27
NEDenise
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

Jessica,
Thanks for posting this update. I think we all needed a little good news today...and Brenda would normally be the first to cheer.
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 09-28-2012, 06:07 PM   #28
alicem
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

Oh Jessica, I can't begin to tell you how wonderful this news is. I've SO needed to hear this - especially because of what is going on with Brenda. I have been so worried because there was no news and even though these times are bittersweet, I am jumping for joy over your results. I know you are doing everything you can for your strength because you are your own special advocate. That is indeed the legacy of those on this forum, and those who are angels. I'm so sorry about the hair. If it means anything, you look so good In your wig, but I know how important normalcy is. I want to remind you that not only are you beautiful on the outside, you are gorgeous on the inside.

Have a wonderful weekend my friend.

{{{{{hugs}}}}}} and much love from Deep in the Heart of Texas!

~all my best, Alice
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9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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Old 09-28-2012, 06:55 PM   #29
karen z
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

Hi. Very grateful for your good news.
Stay strong as I know you can.
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Old 09-28-2012, 07:20 PM   #30
sassy
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

Jessica,

Glad to hear your news, been checking. I take it as all good--hair not withstanding. Like Alice said, you look so good in your wig, but I know its not the same.

Stay strong!
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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
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 09-29-2012, 02:08 AM   #31
Kellennea
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

That is great news!!
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10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
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Old 09-29-2012, 04:59 AM   #32
Pray
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

Jessica, Thank you so much for the update! Your awesome at this fight and this node is just another battle and you have this fight down pat! Gods blessings to you and you will always be in my prayers my friend.
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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 09-29-2012, 07:57 AM   #33
Paty
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

Jessica,

I am glad that things are well, as Sassy says, hair not withstanding, great chance to have lot of different crazy, colored and nice wings, you are gorgeus anyhow.

Sending you my love and hugs.
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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
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Old 09-29-2012, 02:32 PM   #34
Mandamoo
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

Oh Jessica - so good to hear.
Ax
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40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 09-29-2012, 06:38 PM   #35
'lizbeth
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

Awe really, permanent hair loss? I hate that. But very happy that your head is NED.

May good health shine on your with that single enlarged node and we will all be on board with wishing good thoughts that it will shrink right down to nothing.
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Diagnosed 2007
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
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 09-29-2012, 08:30 PM   #36
KDR
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Re: Scanxiety - Brain MRI & Full Body PET tomorrow~

jessica,
Great news on the health front! What an inspiration you are to all!

Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
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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