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Old 03-25-2010, 06:21 PM   #1
mrsd
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how much more?

To all the fantastic people who post with happy and sad news I am forever grateful. I don't feel so alone when I come to visit the board, I'm not a regular poster but I value the support and encouragement each and everyone shares.... I can relate.
I come to you to share what this last six weeks have been for me and I hope that you can see I am a fighter and I'm not ready to give anything up!!! Feb 4th I was told my cancer had spread to my liver.... it's been living in my lungs for over three years now with no symptoms. Now this nasty liver mets... all 4 of them have started a path on a very steep hill downward.
I was to add Taxol to the Herceptin that I've been recieving since my recurrance.... but I devolped a blood clot in my arm and my lower right lung, this put me in hospital for 4 days. I am home recovering... or trying to recover and I continue with the cough same as I had with the blood clot, we do a sputum test and it's OK... on Tuesday. Have chemo on Wednesday and seem Ok, well Thursday night the fever goes up and off to the emerg dept I go , chest xray shows pneumonia in both lungs.... IV anitbiotic started and I was released the next day.... that's been a week ago now. I think today was the closest I've had to a normal day since sometime back in Feb........ I feel like I've had just about all I can take... I guess I'm just so run down physcially and emotionally I feel like I'm running low on fuel...... so sorry for my rambles I try to think postive and most times I can do that but right now it's just not there..... Has anyone else been in a situation like this and if so what did they do????? I have turned into the hermit lady that doesn't want to leave the house...
Thanks for letting me vent my frustrations.... take care and god bless all....
Patricia
__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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Old 03-25-2010, 07:17 PM   #2
caya
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Re: how much more?

Patricia -

Please know that you can come here anytime to whine, laugh, cry, whatever you want - that's what we're here for.

I'm sorry you've been ill - but it sounds like the antibiotic has kicked in, and you will regain your strength to fight anew.

Why don't you make yourself a nice herbal tea with some honey, and look out the window - I see you're in Nova Scotia - are you near the ocean?

I pray for a complete and speedy recovery.

all the best
caya
(your fellow canuck)
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 03-26-2010, 04:54 AM   #3
mrsd
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Re: how much more?

thanks for your support caya, I do live near the ocean but haven't been out of the house except for hospital visits... and the herbal tea sounds like an excellent idea I will give that a try.... hoping each day is better... thanks again
__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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Old 03-26-2010, 06:32 AM   #4
Mary Anne in TX
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Re: how much more?

Hi Patricia!
I can so relate to you becoming hermit like! Were it not for sunshine and my granddaughter, I'd be one for sure. You're walking a tough road at the moment and for me, when things get really tough, I just curl up in the familiar and stay low. I'm trying to do things differently right now. I find that just going to some large store or rather peaceful mall and walking and looking helps too. I drop my granddaughter off at 7:30 and head to Walmart sometimes just to find some sanity. I walk until my thinking clears. As warm weather arrives I know that my hermit like life will evolve into a more outgoing life.
Sometimes we need to "hermit" and sometimes we need to "fly"! You're fighting a battle. Arm yourself with some comfort and care. Find someone or something that will nurture you and get that fighting spirit back in charge. You're so worth the battle, you know! Much love, ma
__________________
MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 03-26-2010, 07:21 AM   #5
MJo
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Re: how much more?

I'm an introvert, so when I need to recover physically, emotionally or both, I become a hermit. I think you will emerge from your hermitage when you are ready. Spring is here down south. I know you northerners have to wait a little longer.
__________________
MJO

IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 03-26-2010, 08:32 AM   #6
Shobha
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Re: how much more?

Patricia,

I can totally understand becoming a hermit. I withdraw too when ever I need to heal or lick my wounds. Sometimes, watching something very funny or reading a good inspirational book, helps me put things in perspective. And yes, a good cup of herbal tea to relax is a definite plus.

Wishing and praying for you to get better and feel better soon!

hugs,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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Old 03-26-2010, 11:22 AM   #7
mrsd
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Re: how much more?

Thanks to all of you.... I was having a bit of pity party for the last few days and feeling so terrible didn't help the situation at all. I feel better today and look forward to tomorrow when I'll be a day stronger and closer to kicking this cancer in the butt...lol Spring is here now ... or at least the snow has all melted and a few days of sunshine will be much welcomed. Thanks to all for your words, I don't often allow myself to slip into such a funk... but it's been rough and I've of course been too hard on myself as usual..lol

Thanks again and everyone keep up with all your posts although I don't post often I read daily.....

__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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Old 03-26-2010, 11:50 AM   #8
Julie2
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Re: how much more?

Hi Patricia,

Thanks for letting us know how you are doing. Please know that you have lot of options left. Is there any TDM1 trial in your area? That is very easy on your body and seems to be very effective.

Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 03-26-2010, 12:06 PM   #9
ElaineM
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Wink Re: how much more?

Take good care of yourself and enjoy the tea. The tea sounds good to me. A good cup of tea, a good book or t.v. show and a good view. Nice
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 03-26-2010, 12:13 PM   #10
Pam P
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Re: how much more?

Patricia, you've been through so much these last couple of months. I'm sorry it's been so rough. Being hermit-like might be the best way for your body, mind and soul to heal itself now. Good tea and rest and more of the same. I hope the new treatment turns things around soon and you'll be feeling stronger in a short time also. Pam
__________________
Pam
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 03-27-2010, 06:33 AM   #11
jml
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Re: how much more?

So glad you're feeling better.
We take on so much, sacrifice so much, endure SO MUCH with this disease. Sometimes it's hard to find the Sun behind the clouds.
But just hang in there and come here for a soft place to fall.
Taxol/Herceptin was the wonder combo that cleaned up
my liver from "innumerable, immeasureable" mets to NED. I hope it does the same for you and you're able to tolerate the treatment without any more set-backs.

Keep us posted and Keep the Faith~

Jml
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Old 03-27-2010, 07:12 AM   #12
mrsd
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Re: how much more?

Thanks so much for your support you are truly an amazing group. Happy to report that I am starting to feel better I do believe my wonderful chemo nurse when she tells me I'm being too hard on myself and I need to give myself credit for what I've been through and realize that it's not easy all the time. The sun is shining here today and I do believe I feel like I am human again... looking forward to a great scan result next month..
__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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Old 03-27-2010, 11:10 AM   #13
Faith in Him
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Re: how much more?

Sunshine and tea can do wonders. When things are bad for me I go into my cave, as I call it. I'm glad things are looking better for you. Be good to yourself.

Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 03-27-2010, 02:32 PM   #14
schoolteacher
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Re: how much more?

Patricia,

Hope you are feeling better today.

Amelia
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Old 03-27-2010, 03:31 PM   #15
Joan M
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Re: how much more?

Patricia,

Don't worry about venting if it makes you feel better.

I haven't had mets to the liver but I had one to the lung, with a recurrence after a wedge resection. I had an RFA of the lung for the recurrent tumor.

After you're feeling better you might want to check out whether you can have radiofrequency ablation or cryoablation of the the liver mets if the chemo is not working or if it's causing you to have blood clots. RFA and cryoablation are done frequently in the liver, much more than in the lung.

I wouldn't leave any stone unturned, and it doesn't hurt to ask your onc. But keep in mind that many oncs don't care for these local procedures and prefer chemo. If you're interesting in finding out whether they might be plausible, you would need to speak directly to an interventional radiologist, which is the doctor who would do RFAs and cryoablations.

I'm sending you a lot of hugs and hoping you'll be feeling better soon.

Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 03-27-2010, 05:55 PM   #16
mrsd
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Posts: 40
Re: how much more?

Joan & Julie... I would to say the option for the TDM1 trial is not an option for me at this point, as I live in Canada and experience the greatest care possible the last discussion I had with my onc was that Tykerb was only available to me if combined with Xeolda.... our access to drugs is years behind you in the US. Will be seeing onc in a few weeks and we'll be having a BIG discussion on drugs... but that's going to be to just tuck away for a later date... I believe the Taxol is doing it's job and until they can prove otherwise that's what I'll believe..

The radiation treatments you have talked about I not aware that they available here where I live, we are a small poor province and unfortunately it affects the services availabe to us here.... so I will be printing some information and checking to see what really is possible here.... thanks again, another day better and starting to kick back
__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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Old 03-28-2010, 08:48 AM   #17
Jean
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Re: how much more?

Patricia
I clearly remember when I was at my lowest - it was when my Mother passed. I ran for my bed and just went under the covers. It was warm and safe, most of all quiet. I need the quiet and silent alone time. This lasted for a good span of time. Sometimes being a hermit is a real need. Then we rebound and slowly
rejoin the race when we are strong again.

Be patient with yourself....you have gone through much these past weeks. Your body needs to rest and rebound, along with your spirit.

Do things at home that you enjoy and don't pressure yourself. You are not a total hermit....as you have all of us here 24/7 at anytime to join you.

Hey, Patricia - hermits are nice too! My son had a bunch of hermit crabs when he was little. They would come out of their little shells and walk around when they felt
safe. He would take them out of their small cage and scatter them on the bed and wait for them to come out.
Many a morning my husband and I woke up with those friendly gritters walking around us.

So I say hermits are smart and know when to come out!
Hugs,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006

Last edited by Jean; 03-28-2010 at 09:15 AM..
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Old 03-28-2010, 09:20 AM   #18
mrsd
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Posts: 40
Re: how much more?

Thanks Jean Each day I feel a bit stronger and am thankful that I am getting better, looking forward to tomorrow and I'm thinking I may treat myself and surprise my co-workers with a visit to the office..... I miss them very much.
__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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Old 03-28-2010, 09:35 AM   #19
Jean
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Re: how much more?

Now that sounds like a good solid plan.
I will bet they will be thrilled to see you and what a perfect time to visit. Please share your visit with us.
I am anxious to know how your day went.

Sending you a big hug.
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 03-28-2010, 01:33 PM   #20
tricia keegan
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Re: how much more?

Hi Patricia,

You've been through a lot and that takes time to get over and will have its up's and down's and emotional turmoil. Give yourself time, you're doing great and I hope continue to feel better each day xx
__________________
Tricia
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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