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Old 03-27-2011, 12:19 AM   #1
Kavy
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Update on Kavy.

Hi, Everyone, I'm at the hospital right now since last Thursday, with no idea when I will get out. I have pneumonia and the upper left lung colapsed by the tumors. I was sent to the ICU on the first day, and my heart beat was 175. I was feeling in so much pain in my left lung, and I also had a fever.
The pain is gone now, but I still have a bad cough. My white blood cells that were 30 when I got here, are still high 20, when the normal should be 4 to 10. I also developed diabetes, and having been taking 2 kinds of insuline, but it is still up. I'm very worried because I was supposed to have Herceptin this week, but I couldn't go because of the pain. Here at the hospital they cancelled the Tykerb, I don't know why. I do not know if my lung tumors are larger, because they made a scan that it is different from the one I usually do, and my scan is also scheduled for March 29. So I feel without protection from Herceptin and Tykerb. According to the nurse in the ICU I had 5 of the symptoms of sepsis (sp?), but I feel better now. I'm very worried about the fact that the infection is taking so long to respond to the antibiotic treatment, and I am taking 2 of the strongest kin of antibiotic, according to the doctors. Anybody with similar experience? First day I got to the hospital the doctor was talking to my husband and he was staring at him trying to tell him there was not much he could do, I'm very good in reading people's expressions and their intentions. I hope and pray I can prove him wrong. Again I ask you for your prayers, good thoughts and good vibes. Thank you. I'm praying for all of you too.
Love,
KarlaV.
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Old 03-27-2011, 01:39 AM   #2
Chelee
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Re: Update on Kavy.

Hi Kavy,
I am so sorry to hear your in the hospital and not feeling well. Sounds like you had alot going on so give those antibiotic's time to work. I landed in the hospital once and they weren't really sure what was going on but I was in serious condition. Was put on a wide spectrum of antibiotic's, heart moniter and with a little time I was OK, It just took longer then I planned on. Like you I was worried about them stopping my trt and felt so unprotected. So I can certainly understand why you are worried about not having your Herceptin and Tykerb. With a collapsed lung and high heart rate is probably why they stopped your trt for now. They rather play it safe. This way if anything is going on at least they know it's not caused by the Herceptin and Tykerb. (Rule those two out completely.) Your body needs to heal now. I know my trt was stopped for 21 days and I hated that--so I really do understand. My heart really goes out to you.

One of the first things they want to do is get rid of that infection as I'm sure you know. Once they do that you will start feeling better. It sounds like you have a good medical team and are getting good care. Try not to worry too much (easier said then done I know.) and get lots of rest and before you know it you will get through this. I will be keeping you in my thoughts and prayers. Sending you one really big hug. Keep us updated pls.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 03-27-2011, 05:18 AM   #3
Ellie F
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Re: Update on Kavy.

Hi Kavy
So sorry you're not well. I am sure you WILL prove the docs wrong and get back to feeling well again.It really sounds like you have caught a bad infection. Here in England many ppl are ill with bad lung infections some for weeks. Let us know how you go
Hugs
Ellie
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Old 03-27-2011, 07:39 AM   #4
LoisLane
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Re: Update on Kavy.

Hi Karla you are very strong. You are going through a lot right now and here you are as so many people on this site do ,keep us updated and are so proactive in their care. It is a wonderful community on this board and we all share each others worry and good times. I wish you so much strength and prayer to be sent your way and hopefully you will be out of the hospital. Lois.
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August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara

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

January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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Old 03-27-2011, 10:51 AM   #5
Pam P
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Re: Update on Kavy.

Karla - I'm sending you good prayers and encouragement for the antibiotics to get the infection resolved quickly and for you to do your part by letting your body rest, rest, rest. Then you can get back to the regular tx. Perhaps the diabetes is temporary due to your body's in balance right now? Praying for your doctor's wisdom now to for the best treatment choices. Keep up faith - you are a fighter. Peace, 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 03-27-2011, 11:10 AM   #6
StephN
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Re: Update on Kavy.

Hi - Infections like these (pneumonia, sepsis) are such a bummer. You don't deserve them at all!

I met a nurse recently who has been sick for several months trying to get rid of a bout with sepsis. Actually her second bout. She has to be treated in the hospital when it flares up.

She did not have surgery before the sepsis showed up and has no idea HOW she contracted it.

So, my friends, take every precaution you can, there is a new superbug as well to worry about.

Karla, you are already in my prayers and best healing thoughts coming your way. Eat and drink to keep up your strength.
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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 03-27-2011, 11:12 AM   #7
ElaineM
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Wink Re: Update on Kavy.

I am sorry to hear you are in the hospital. Hang in there and keep fighting !!!!!!!! I have my fingers crossed for you.
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Old 03-27-2011, 11:20 AM   #8
michka
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Re: Update on Kavy.

Kavy, you didn't need that. I am hoping you are going to feel better very fast now and go back up the hill. I am thinking of you. 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 03-27-2011, 12:02 PM   #9
krisvell
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Re: Update on Kavy.

Karla;
I am so sorry to hear of this new challenge. You have been keeping me propped up so please let me return the favor and take my prayers, good vibes, and positive thoughts to help you get better real soon. Before you know it, you will be back on Tykerb/Herceptin keeping everything else at bay.
Healing prayers and love,
Kris.....
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06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 03-27-2011, 12:52 PM   #10
Sheila
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Re: Update on Kavy.

Karla
You are in my thoughts and prayers for the antibiotics to work quickly and efficiently..any infection is draining to the body, without the added effects of treatment. When i had pneumonia 2 years ago, i had to go off treatment for 2 months. The good news is, there is a washot period, where these drugs remain in your system, so you are still benefitting even though you are temporarily off. Try to relax and let the antibiotics cleanse the infection...stay positive and get your good endorphins flowing....sending a big hug, soon you'll be over this hump and back in the treatment hump!
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 03-27-2011, 01:54 PM   #11
tricia keegan
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Re: Update on Kavy.

Karla, keeping you in my thoughts and prayers, feel better soon xx
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 03-27-2011, 02:36 PM   #12
Mary L
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Re: Update on Kavy.

Karla, I am praying for you. Hope you will be feeling better soon. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 03-27-2011, 05:13 PM   #13
mmoons
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Re: Update on Kavy.

Karla-

Stay strong. You are a fighter...keep that spirit. Please feel all the love and support coming your way from all of us. Sending you cyber hugs and healing thoughts and prayers.

Maureen
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My loves

IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
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Old 03-27-2011, 09:05 PM   #14
Paty
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Re: Update on Kavy.

Dear Karla,

I am praying for you, hoping these bad moments will pass soon. Sending you hughs and best wishes for a prompt recovery.

All my love,

Paty
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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 03-27-2011, 11:44 PM   #15
Trish
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Re: Update on Kavy.

My very best wishes to you Karla but I am sending very bad vibes to your pneumonia bug. May you feel better very soon.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 03-28-2011, 10:52 AM   #16
Jackie07
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Re: Update on Kavy.

Karla,

So sorry for the setback. We'll be praying for your speedy recovery and getting back on your treatment plan.
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Old 03-28-2011, 03:22 PM   #17
Elizabethtx
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Re: Update on Kavy.

There are no words to say to take away the worry you must have right now. Give the antibiotics time to work and your body will come around. You'll be back on treatments ( joy) in no time! I will be praying for you daily.
Elizabeth
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011








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Old 03-29-2011, 02:24 AM   #18
Kavy
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Re: Update on Kavy.

Thank you all for your support, prayers and good thoughts.
I got out of the hospital yesterday, Yeah!!!!!!!!!, but my white counts were still high 18, I still have a bad cough, and I'm feeling very tired. When the doctor came to see me, I put up my best face, and pretended I was feeling great lol, but I though I was going to stay another day. He said to be safe, he should keep me one more day there, but since I was feeling and looking good, he was going to release me YES!!!!!! I couldn't believe!!!! I was so, so happy!!!!
Started my Tykerb yesterday, and slept and rested since I got home. Today I went for my Herceptin, and slept most of the day after I came back. I'm still taking insulin and 2 kinds of antibiotic, besides the other medications I already take. I still have a bad cough, feel short of breath, tired and had mild fever today. Tomorrow I will have a CT scan of the chest, and hopefully things will look better than on the scan they did in the hospital. I will see my pulmonologist this week and oncologist next week. I pray that the infection and this bad cough go away soon.
Did any of you have a partially colapsed lung? Is it painful? I wonder about my partial colapsed lung. I was in extremely pain when I went to the ER, but the pain is gone. Does that mean that my left lung is back to normal? I pray that this is true.
Thanks again for your support. You guys are amazing. God bless you all.
I will keep you updated.
Love to all,
KarlaV.
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Old 03-29-2011, 06:38 AM   #19
krisvell
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Re: Update on Kavy.

Hi Karla;
So glad you are home and back on Herceptin. Good luck with the Ct scan and drs visits. Sending you healing prayers and support.
Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 03-29-2011, 12:18 PM   #20
schoolteacher
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Join Date: Feb 2008
Location: Georgia
Posts: 1,486
Re: Update on Kavy.

Glad to hear from you, Karla. Hope you are feeling better today. You are in my prayers.

Amelia
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