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Old 05-03-2012, 08:02 PM   #1
jml
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Checking in

Hi friends~
I haven't been in the boards much lately & just trying to get caught up on everyone's news.
First and foremost, thank you everyone for your kind words of comfort and sympathy over my sweet Dad's passing. I'm still in Hawaii, but am returning to Atlanta next week.
Everyday brings a surprising new challenge in mourning and I'm heartbroken about leaving my Mom. Fortunately she's got an amazing group of friends that call and visit and are even going to stay with her during the night's after I leave (it's a pretty common Filipino practice for friends & family to move in with the widow in the days following to help cook, clean house and just take care & keep company). So that does bring much comfort.
I don't think I realized how this grief would manifest for me, but it has been physically really hard. I lost too much weight, was severely anemic again & required a transfusion the day before my Dad's services, have been fighting debilitating nausea & had been so lethargic. Not only was I grieving my Dad
but I also was so concerned about worrying my mom.
Fortunately after having my Herceptin infusion and having a serious
talk with the doc & nurse AND a short 5 day reprieve from the oral methotrexate & cytoxan, I'm feeling physically stronger and not so fearful
about getting back to living on my own and working again.
I have a brain MRI the week after I get back to Atl. It'll be the 3 month follow up to the clean (yay!) MRI that I had 1 month after finishing WBR in March. I'm trying not to think about it, but I can feel the fear & anxiety creeping up.
I haven't had a PET scan since progressing on Halaven at the end of December, then switching to daily oral methotrexate + cytoxan, but have seen the supraclav node shrink & was undetectable by US after only a few weeks on this combo.
Scheduling a PET scan is still open for discussion, but my Onc is thinking that since we don't have a next treatment option - until Pertuzumab is approved, hopefully as soon as June- if I'm feeling well, am asymptomatic and nothing pops up, we'll just stay on course. I really needed that short 5 day chemo break, so maybe I'll ask my doc if we can do that every 4 weeks or so.
Would so appreciate your thoughts and feedback?

Thank you again everyone, for all your support you've offered, for so much in so many ways~

Keep the Faith

Jessica
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Old 05-03-2012, 08:54 PM   #2
ElaineM
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Wink Re: Checking in

Hi,
I am so sorry to hear about your Dad's passing. I think he was comforted to have you with him during his illness.
It is normal to feel alot of different things during this difficult time for you and your family.
It is good that your Mom has people to help her after you return to the mainland. That must be very comforting to you.
I am glad you were able to get your Herceptin treatment and talk to helpful medical professionals while you are in Hawaii. I also am sure you will be able to get back on track after you return to the mainland. Your treatment plan for the next month sounds reasonable.
Hopefully your oncologist will agree and support your efforts.
June is only one month away, so if all goes well with the FDA Petuzamab may be approved soon. I keep hearing it may be approved in June, so let's hope that happens.
That would be terrific.
Take good care of yourself and have a good trip by to the mainland. All the best to you and your Mom !!
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12 years and counting
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Old 05-03-2012, 09:58 PM   #3
jml
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Re: Checking in

Elaine-
Thank you for your kind, encouraging words & your generous offer to help me connect with an Onc while here in Hawaii.
I returned to Straub because I had gotten my Herceptin there before on a previous extended visit home a few years back.And my cousin and his wife both work at Straub-in fact the nurses that took care of me each asked if we were related, so I knew I was in good hands. The Onc that I saw was very kind and gentle with me and reassured me that a 5 day break from the daily chemo would not be irreversibly detrimental and that my body could really use the break.
I had hoped that we might have the opportunity to meet, but this trip was just too difficult. I'll be home again soon and we'll have to arrange to meet then!
I don't know how I'm going to leave this beautiful island and my family. I may cry the entire 9hr flight back

A hui hou~
Jessica

Last edited by jml; 05-03-2012 at 10:01 PM.. Reason: Typos
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Old 05-03-2012, 11:20 PM   #4
Paty
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Re: Checking in

Dear Jessica,

I am so sorry about your dad, i did not know he had passed. i can immagine how you feel. I still have my dad, but lost my mom some years ago and can immagine the pain that one goes through when losing one of the parents, nobody can cover that emptiness. I also immagine the pain of leaving your mom for a while, specially at this time, good she has the help of her friends, that will help her a lot. On the other hand, I can immagine the anxiety you are experiencing, i feel the same when I have to go to have my scans done for control.
I am glad that you are feeling the drive to move your life forward and go back to your living as you wish.

My dear, keep going with the flow, deep-breath and remember that we just have the now and here, so try to enjoy it to the fullest. Remember we love you. I am sending you a big big hug from su ny and very very hot Mexico.
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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 05-04-2012, 02:35 PM   #5
sassy
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Re: Checking in

Jessica,

Glad to hear you are feeling stronger and ready to pick back up on life at home. I know leaving your mom must be really hard. I had a hard time leaving my dad when my mom passed.

I keep you in my prayers, and I laugh everytime I look at you and your really big dog in your pic!

Lots of love.....
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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 05-04-2012, 04:11 PM   #6
chrisy
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Re: Checking in

Jessica, I also was not paying attention and did not know of your dads passing. I'm so sorry for your loss, and the grieving you are going through now. Last I remember was you telling us how your dad had gotten the chance to see your "clean"MRI. I know that was important to him.

I know the trip home will be a longer one than usual. If you feel like crying, go ahead. You will be surprised at how that will summon many angels to you. Really - that happened to me while traveling after the passing of both my mom and dad. I still miss them.

I'm feeling good about your upcoming scans, and regardless of what they show, I think a break now and then is necessary. You've been going at this for years and you know how important it is to conserve your resources.

I'm glad you posted, I've been thinking about you. Take care my fringe, and I hope you can feel my loving prayers wrapped around you!
Chris
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 05-09-2012, 02:42 PM   #7
fullofbeans
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Re: Checking in

dear Jessica,

glad you could spend some time with your mum sorry it was so sad to leave.

I worked 3 months in the Philippines around Cebu and loved the bailar (sp).

you are a trouper and my silent hero,

wishing you the best for your scan
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35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama

Last edited by fullofbeans; 05-09-2012 at 02:44 PM..
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Old 05-09-2012, 02:56 PM   #8
Vicky
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Re: Checking in

I'm so sorry for your loss... and yes, grief manifests in ways we don't always expect. I struggled physically for awhile with eating and sleeping after my Dad passed in 2010, and this was before my cancer dx. Be as kind as possible to yourself! I felt just numb for a few months and had no real sense of "normalcy." Allow yourself the time to grieve as long as you need.

I'm so glad you got a chemo break- it had to have helped. I'm thinking of you and saying a prayer for a good scan and some peace and rest from all the burden you've been shouldering.
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3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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