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Old 02-04-2013, 07:51 PM   #1
jml
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Hospital stay & Hair Loss...makes for a full week:(

HI My Friends~
Meant to post when I got home last Wednesday after a SURPRISE 5 day hospital stay for severe neutropenia (.9 - should be 4-10), severe dehydration, and blood born staff infection. UGH!
I started PHT ~3 weeks ago & the following 10 days were wrought with side effects gone wild. I thought the GI issues were bad, and the rash, but the mouthsores were really really awful, preventing me from eating & drinking.
I woke last Saturday with 102.6 temp and was told by the onc on-call to go straight to ER. So I did. Had no idea it would turn into a 5 day stay, with 2 types of IV antibiotics, twice a day, fluids & virtual isolation. I was so dehydrated that my urine looked like motor oil & my tongue like a dried chicken breast dog treat!
I've dealt with tough side effects many times on this 10.5 yr odyssey, but never so severe that I required hospitalization.
In retrospect, I think we started me on chemo too soon after finishing chest radiation - only waited a week. My poor bone marrow has become so sluggish in the past year and a half, with few breaks from systemic treatment. And on the day that I got my 1st PHT my counts were already so compromised that they had to reduce/adjust the dose so that I could start. My WBC's were only 2.4, so there was only way to go from there but down.
I can't argue with starting the combo because I was anxious to get started and clean up anything disease left over after radiation.
I was dischared after 5 days in hospital with a WBC of only 1.5, but the infection was resolved and all my counts were heading in the right direction they said it was better/safer for me to be at home than surrounded by all the bugs in the hospital.
So I've been very compliant - not going out, drinking lots, washing hands lots. My energy is pretty good, so I wiped down all my counters and cleaned house, but am nervous to go anywhere until I know my counts are WNL.
I'm scheduled for my next cycle of PHT on Thursday, but will ask to delay an extra week to give my counts a chance to really reach WNL. I don't want another dose reduction just so that I can get the treatment. Don't want to set myself up for another hospital stay.

Sadly, my hair - as thin & fine as WBR has left it- started falling out tonight. I'm so sad. This is the 5th time I'll lose my hair, 3rd time since August 2011. It never gets easier for me. You'd think it might, but it just doesn't. I have to remember the process of losing it is so hard, but once it's gone, it's gone and one less thing to worry about.
And if a single person tells me I should by an electric pink wig, or that I can "totally rock the bald look" or "you're so pretty, even without hair." I'm going to SCREAM!
I always try to be more gracious when people say dumb things, but my patience & grace have worn thin.
I'm getting tired my friends...I don't know what I mean by that, but I'm sad tonight and just exhausted by all of it.
Trying to keep the Faith~

Jessica

Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!

10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart. Not a perfect scan, but pretty darn good.
Maintain current treatment and Echocardiogram on 11/1 to keep an eye on node.11/1/12 –echo shows normal cardiac function J & node non-threating,
but experiencing symptoms of Superior Vena Cava Syndrome (obstruction/compression)

12/3 - hold cytoxan & methotrexate bc counts too low.
12/13-moved up PET scan due to increased SVC symptoms
12/14 –No more NED
L node progression causing increased SVC symptoms
12/17 – repeat echo & new chest mri for closer look…

Radiation to chest node recommended, change of systemic treatment pending
12/20/12 – 1/10/13 -14 rounds of rads to chest for mass causingSVCS
1/17/2013 – Started Pertuzumab, Herceptin, Taxotere
1/26-1/30 – Surprise hospital stay for severe dehydration, dangerously low counts & blood born staph.
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Old 02-04-2013, 08:09 PM   #2
StephN
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Re: Hospital stay & Hair Loss...makes for a full week:(

Hate those BAD "surprises." And I know you missed your dog! Fighting a bad infection is exhausting even when a person has better counts to start with. You did WELL to fend it off.

Just glad that you are sprung and able to do what you can to eat and drink what you like. Mouth sores are the pits. I gather the T is for a taxane, which is hard on hair and palate. Do you have a good mouthwash to help that during the coming treatments?

Hospitals are not generally uplifting, and you will feel happier when it is farther behind you. Hope the weather is nice so you can go out in the fresh air.
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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 02-05-2013, 12:14 AM   #3
Jaimieh
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Re: Hospital stay & Hair Loss...makes for a full week:(

Jessica I am glad that you listened to your oncologist and that you are now back home. I hope you continue to feel better.

PS- I found that 50% benedryl mixed with 50% mylanta helped with my mouth sores. I had tried everything but this last ditch effort really helped.
__________________
Diag. 12/24/08-
IDC 1.3 er-/pr- HER2+
Grade 3 0/2 lymph nodes
no angiolympathic invasion

Bi-Lat. Mast. 1/8/09
Exchange scheduled for 6/17/09
Lost implants due to unknown reason :(

Hip Flap 1/26/2010 in NOLA :) LOVE EM'

TCH x6 (6 done and I am hoping to never do it again )

Well so much for never...
Local recurrence May 25,2014 is left over breast tissue.
April 2 , 2014 lumpectomy
April 28, 2014- June 9, 2014 start AC x 4
Taxol x12
Perjeta x 6
Herceptin x 18
And 33 rads just for fun. NOT!!!
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Old 02-05-2013, 01:32 AM   #4
Pray
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Re: Hospital stay & Hair Loss...makes for a full week:(

Jessica, I'm so sorry your having such a rough time you are in my prayers. You are among the greatest fighters here and no one is above having a bad day. You are home thats where I find the most comfort. May the peace of our Lord be with you today and always.

Gods blessings to you my friend.

Your 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 02-05-2013, 02:17 AM   #5
Redwolf8812
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Re: Hospital stay & Hair Loss...makes for a full week:(

Aw, Jessica, I'm so sorry to hear this. Praying you're feeling your old self soon.

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

Penny

July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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Old 02-05-2013, 05:59 AM   #6
Paty
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Re: Hospital stay & Hair Loss...makes for a full week:(

Dear Jesica,
I am so sorry to hear all what you are going thru. I gues you and only you knows how this awful side effects feel. I hug you in the distance and send ou all my love. Wish I could be near to help you find confort. Keeping you in my prayers.
__________________
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 02-05-2013, 06:45 AM   #7
linn65
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Re: Hospital stay & Hair Loss...makes for a full week:(

Wow, you have been thru it!! And losing your hair SUCKS!! And the hot flashes make it worse wairing a wig....And I totally relate when people say all those stupid things about rockin the bald look, or how nice a different color, a different style or you have a great shaped head. All those things really do not help because I would prefer a BAD HAIR DAY OR PONY TAIL!!! I am sure you are tired just reading your profile was completely exhausting let along going thru it all. The only way I can get thru a really completely emotionally, mentally, and physically bad day is to tell or remind myself that the next day will be better. You are amazing and must be on the road to the next step!! Because you are pooring out your emotions on this site, and I think that means you are working thru to the next step in the process! Hang tough!!
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myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 02-05-2013, 08:18 AM   #8
sarah
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Re: Hospital stay & Hair Loss...makes for a full week:(

very nasty surprise. hope things are clearing up. Did they give you any special mouth wash to help? I know during my chemo so long ago now, they gave me some bicarbonate water to gargle with 6 times a day wonder if that might help you with that problem.
hugs
sarah
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Old 02-05-2013, 09:01 AM   #9
linn65
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Re: Hospital stay & Hair Loss...makes for a full week:(

My ONC gave me Miracle Mouth Wash and it worked great!!! It tastes nasty because you swallow it after but it WORKS!
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 02-05-2013, 05:14 PM   #10
KDR
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Re: Hospital stay & Hair Loss...makes for a full week:(

Jessica,
I understand where you are coming from. Totally. But you will forge on, look at your signature, or better yet, don't! I'm always of the belief that something is right around the corner, so let's keep peeking...
Love you
Karen
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Old 02-05-2013, 05:24 PM   #11
Deb33
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Posts: 133
Re: Hospital stay & Hair Loss...makes for a full week:(

I am so sorry about your hair - I lost mine twice and really grieved over the second time. I do not know how you have managed over 10 years of the constant struggles. You are in everyone's prayers that soon Life will lighten up on you.
__________________
11/19/10 Identified swollen lymph node
1/24/11 Mammogram showed microcalcifications - no mass
2/4/11 Diagnosed ER/PR- HER2+++
2/23/11 Began TCH protocol every 21 days 6x
5/23/11 Ultrasound of originally diseased lymph node shows normal
7/25/11 Lymph node dissection - 8 of 14 show disease
7/29/11 Double mastectomy with reconstruction (expanders)
8/29/11 Begin follow up chemo - Adriamycin 4 treatments every 2 weeks and Xeloda. Self inject Nupogen shots
1/6/12 6 weeks of Radiation finished
2/13/12 Last Herceptin/remove port
3/27/12 PET/Brain Scan NED :)
8/15/12 Final reconstruction - hello nipples, good bye expanders
9/14/12 Rejected implant/infection. Implant removed
5/6/13 Latissumis Dorsi surgery left side with expander

PS - my photo was taken 5 days after my double mastectomy surgery and 6 weeks after my TCH was completed
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Old 02-05-2013, 05:50 PM   #12
jacqueline1102
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Re: Hospital stay & Hair Loss...makes for a full week:(

Dear Jessica,

I am so sorry to hear about all that you have been through. I am glad you are home and resting. You have been so supportive of us here. I hope that you hear/read the support from us and know you are cared about. Take good care of yourself.

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
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 02-05-2013, 06:02 PM   #13
KsGal
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Re: Hospital stay & Hair Loss...makes for a full week:(

Im so sorry to hear of your trip to the hospital. You just haven't caught a break with this line of treatment. Im so sorry you lost your hair again as well. I, also, just lost all mine with the whole brain radiation. It actually bothered me more than the first time I lost it. The Ulcerease is still the best thing I have found for the mouth sores. If you use it before a meal, it does help numb it up so you can at least get something down. Hope you are feeling much better soon. ((hugs))
__________________
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 02-05-2013, 10:57 PM   #14
Jackie07
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Re: Hospital stay & Hair Loss...makes for a full week:(

I hear ya...

Take care, brave soldier...

We are marching alongside you ...

(Ask your doctor to prescribe the 'magic' mouth wash http://www.ehow.com/about_5195046_ma...used-for_.html
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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

Last edited by Jackie07; 02-05-2013 at 11:01 PM..
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Old 02-06-2013, 06:21 AM   #15
NEDenise
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Re: Hospital stay & Hair Loss...makes for a full week:(

Jessica,
You've been on my mind a lot lately. Thank you so much for letting us know how you are.

I'm so sorry for all you've been through in your latest battles.
Losing your beautiful hair...AGAIN. Really?
Neutropenia and Staph AT THE SAME TIME? Seriously?

It's simply not fair that some of us just can't seem to catch a break. Rest assured that I'll be having some rather heated discussions with the Lord on your behalf, my friend. It's just one damn thing after another. Can't we fit a break in occasionally? I'm really struggling to believe that all the crap some of us are faced with is part of a grand plan.

And...I know people who make comments about "how good we look" mean well.
Of that I have no doubt.
But seriously...at this point we stage IV ladies are fighting for our lives...every minute of every day. I don't know about you, but I don't need to hear how "great" I look.
I don't look great.
I know it, they know it.

Again, I KNOW they mean well... but, here's a thought... maybe some of those Pink-tober Awareness millions could be devoted to making the public "aware" of what's okay to say to people fighting cancer, and what is perhaps not such a good idea.

Or maybe some of those millions could go toward making the public "aware" what kinds of help are actually helpful to people struggling with cancer-related illness. (like maybe cleaning and disinfecting your counters for you...so you don't have to risk touching germs)

Okay, my rant is over. Sorry Jessica. Your struggle just made me sooo angry when I read about it...I hope you read my post the way it's intended...with love and in solidarity.

Sending you all the healing energy I can focus your way.
Denise
PS - IMHO you have every right to mourn the loss of your hair. It's not vain, or silly. It's part of your identity, and a symbol of wellness...it doesn't fall out when things are going well. So, I mourn it with you.
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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 02-06-2013, 07:23 AM   #16
Pam P
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Re: Hospital stay & Hair Loss...makes for a full week:(

Jessica - well this just sucks. You are a courageous woman and have faced such tough . I hope your mouth sores will heal soon and your WBC will come back to normal. Keep your chin up. You are in my thoughts for strength and healing. Pam
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 02-06-2013, 08:35 AM   #17
jml
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Re: Hospital stay & Hair Loss...makes for a full week:(

Thank you my friends, for your kindness, compassion, prayers, encouragement and even more so your passion and fire, during a time that I'm feeling so vulnerable and scared. And even a little hopeless.
I feel well, but this hospitalization and how fragile my health was has really frightened me.
Waiting to hear back from my doc about how we'll proceed with this combo - an extra week to give my body/counts to normalize? neupogen?
I just don't know & the not knowing leaves me feeling helpless.
We'll know soon enough and will keep you posted~

I don't know what I would do with out you, my sisters.

Keeping the Faith

Jessica
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Old 02-06-2013, 08:41 AM   #18
greenacres
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Re: Hospital stay & Hair Loss...makes for a full week:(

You are a true warrior. I don't post a lot, but I do keep up with updates. I want to let you know that I am praying for you every step of the way. I'm sorry you are going through all of this and I'm sorry you are losing your hair yet again....I can't imagine what you are feeling....but I want you to know I am thinking about you. Stay strong. Sandra
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Stage 1, Tumor 1.4 cm, Grade 3, ER-/PR-/HER2+++
Poorly Differentiated IDC with comedo type necrosis with DCIS/ALH :(
Mammogram: 11/12/09
Call Back Mammo: 11/17/09
Biopsy: 11/25/09
Diagnosis Call: 12/2/09
Partial MX: 12/16/09. 3 LN clean.
6 Cycles Chemo (TCH) Jan-April/10; Herceptin all of 2010; 33 Rads complete 7/10. Herceptin done 12/10.
FOLLOW UPS:
Bil mammo, and Breast MRI 12/10 - CLEAN! (after a second lump was biopsied and BENIGN - showed giant cell reaction?).
Bil mammo 6/11 - CLEAN!
Left mammo 12/11 - CLEAN!
PET/CT scan 4/6/12 - CLEAN!
Bil mammo 8/12 - CLEAN!
November 2012 - Gallbladder Removed.
Bil MRI 2/13 - CLEAN!

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Old 02-06-2013, 10:25 AM   #19
karen z
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Re: Hospital stay & Hair Loss...makes for a full week:(

Boy Jess- what a week. It sounds like you have been through the wringer and I am so sorry. We are all beside you and keeping the faith that things will get easier. Don't forget that we are here and are always thinking of you and wanting the very best for you. Stay strong even thought it is often a struggle to do so. You are one of the strongest gals around.
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Old 02-06-2013, 10:29 AM   #20
Lori R
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Re: Hospital stay & Hair Loss...makes for a full week:(

Dear Jessica,
I have been thinking of you and while not pleased by the news of surprise challenges you amaze me with your fight!!

Your thoughts about waiting a week to physically and emotionally recharge sounds like a solid plan. We are so programmed to push and push to beat back this disease. Sometimes we just need a break.

I too ended up in the hospital with a blood infection and IV antibiotics while on taxotere. I remember going to the bathroom and seeing my bald head in the mirror and all of the IV gear and just breaking down. So, please know that others share the pain of hair loss and the grief that this journey brings. You are not alone!!!

Thinking of you frequently....Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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