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Old 11-11-2010, 10:19 AM   #1
Biddy
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Join Date: Nov 2010
Posts: 3
Grieving already

Hi folks

I'm a newbie here. My sister Kelly was diagnosed last week with secondary cancer in a lymph node, sternum and in her liver. She seems to be coping amazingly well. I, on the other hand, am a mess. I just can't seem to stop crying. I feel as if I've lost her already and that I'm grieving too soon. I'm desperate for any advice on how I can live in the moment and enjoy the time I have left with Kelly. How do cope when your world is turned upside down?

B
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Old 11-11-2010, 10:48 AM   #2
Mary L
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Re: Grieving already

Hello Biddy. This is a time when your sister needs you to be strong for her. I know it's easier said than done, but she needs you to be there for her and to give her support and hope. When I went through my diag. 8 years ago, my sisters, friends and family were there for me and helped me get through all of the tests, decisions and treatments. My son came to my house the day I was diag. He sat in my livingroom and said "Mom, you have a 28% chance of surviving and I know you can do it." I will never forget it. He gave me hope when I needed it so badly. Well, he was right. I have survived 8 years with Inflammatory Breast Cancer. Pull yourself together and be there for your sister. It will mean so much to her and to you. Best wishes, 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 11-11-2010, 12:04 PM   #3
Jackie07
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Re: Grieving already

Hi Biddy,

There are a couple of 'long-term survivor' 'long-time survivor' threads you can access by typing into the 'Search' window. There are several newly diagnosed who have participated in T-DM1 and have very good result.

'Cancer' is always a shocking word. The old, grim news about Her-2 doesn't help when we look up literature on the subject. However, since the advent of Herceptin, Her2 has become one of the most treatable breast cancer.

And new technology is bringing everyone hope. I was just told that one of three small tumors (Central Neurocytomas - unrelated to BC) has the potential to block the CSF flow in my brain. I've had Gamma-knife nine years ago to curb the growth and thought I might need to 'Gamma' it again. But then I search the PubMed and found out there are newer, more versatile technology/machines for treating tumors in different parts of the body. And our local hospital just purchased one (Novalis Tx) in June.

I know how hard it is for family members to be in this kind of situation. I was quite 'happy' when my life-long brain tumor was found even though there were a couple of days before the surgery when I suddently got 'frightened' (just the toughts of someone cutting into my head...) Yet while I was being wheeled into the surgical ward with a smile, my family members were all under tremendous stress. My Oldest Brother, who had come from overseas - representing my side of the family - literally wept. He got tears in his eyes again 5 years later when my husband and I went 'home' to visit my family.

Positive thinking increases the release of endorphin in our brain and improves the immune system to fight all kinds of diseases. Please help your sister remain positive. Please let her know that she's got a legion of fellow fighters here supporting her.
__________________
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
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

"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; 05-29-2011 at 08:43 PM..
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Old 11-11-2010, 07:22 PM   #4
Lori R
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Re: Grieving already

Dear Biddy,
First of all...Kelly is extremely lucky to have a sister that loves her so much. I was fortunate to have 2 sisters that I knew I could count on for anything I needed. That was huge and I am sure you are up to it.

When I was diagnosed my oldest sister came to visit because she wanted to have some time when we could have fun, she was afraid that I would be bedridden and then die.

Well....here it is 3+ years later and through the entire process I've lived a very full life. (ok....interrupted at times which is frustrating) The key is, by coming to this site I saw that there were women who were active, full of hope and were incredibly knowledgeable. Please encourage your sister to come to the site.

I am glad that you found us and are welcome to ask questions, vent, admit in open how frightened you are because we all understand.

Here is to many more years with your sister!!!!
__________________
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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Old 11-11-2010, 10:49 PM   #5
chrisy
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Re: Grieving already

Biddy,

[How do cope when your world is turned upside down?]

This was similar to the question my husband asked Oncologist#2 when I was diagnosed with secondary cancer in my liver. Although it was hard to believe at the time, her answer was both wise and true: "You just do".

That was a terrible time for both of us, as it is for you and your sister now. I am starting to cry right now as I write this and I'm not sure if it is for you and your sister, or me and mine. Probably both.

I agree with all the responses so far, and am sure you will hear from many others who have walked that path.

It's natural to grieve - you may feel that you and Kelly's dreams of the future have been stolen from you. That may or may not be true, but you will definitely have a different awareness and reverence for life.

But do not lose heart. You do not know what the future holds! True, science is running very fast and I believe the answers are nearly within reach. In the meantime, doctors are beginning to look at this as a chronic disease that can be managed, sometimes for a long time. True, there is not yet a "cure" but even if not curable, it is treatable. I know several who I believe ARE in fact cured of liver mets, it just isn't proven.

My advice for how to live in the moment and enjoy the "time left" with Kelly is this:

First, remember that you do not know what the future holds, or how long that future will be.

Second, (this really helped me, but then I am a little twisted) think about how stupid you'll feel 20 years from now - with Kelly still right there with you - if you've wasted it all worrying about death!

You just have to take it as it comes. One step at a time, breathe in breathe out. Appreciate every day for what it is.

And just love her.

chris
__________________
Chris in Scotts Valley
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 11-12-2010, 09:39 AM   #6
Biddy
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Re: Grieving already

Thanks guys. I think that I've been afraid to let myself have any hope, that I've been preparing myself for the worst, but I can see that by doing that I'm not doing myself or Kelly any good.

But I have already got some hope from your posts. To have years left with Kelly would be amazing.

Chris - your post especially touched me - thank you.

You are incredible people.

B
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Old 11-12-2010, 06:44 PM   #7
Lori R
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Re: Grieving already

Hey Biddy,
Passing along more hope!!! I just returned from receiving the results of a liver CT scan. After cryoablation in August and 3+ months of Navelbine I am back to NED. (No Evidence of Disease)

Yahooo.....an example of just taking one step at a time.

I know Kelly can do it!!! 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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Old 11-14-2010, 03:36 PM   #8
KirisMum
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Re: Grieving already

One of my best friends in the world was diagnosed with Stage IV breast cancer back in the late 1980s. She lived in England. She came to me for Christmas 1990 and I went over for a long weekend in the fall of 1991 to "say goodbye." I was a mess. She had mets in her spine, abdomen, liver and they were pretty sure her brain. She was still very active but as she put it, "a little peaked." She had had intensive chemotherapy and radiation, but she refused surgery, saying she "would not have her body cut open." She also did a lot of alternative stuff - acupuncture, mistletoe injections, working with a lay witch, etc. Yes, she was a little crazy, but she was my soulmate.

Fast forward to today. Both of her daughters had baby girls this year. My friend (yes, she is still around! 20 years later) has come back to London from traveling through Majorca with her lover in a VW bus to dote on her grandbabies for a few months. We talked by phone last week. I asked her was she "clear"? She laughed and told me that due to a huge fire at the Marsden Hospital a few years ago, all her records had been destroyed, that she thinks she still has a little spot near her pancreas but she doesn't pay much attention, she feels fine, and that since it's now three years since her last scan, she should probably go for a checkup.

When she came for Christmas that year, we were in Macy's together, and I made a wish under the holly. She asked what I'd wished for, and I told her, "I wished that you would outlive me." She was horrified. "TAKE IT BACK!" she told me. "You're likely to be hit by a bus when we leave here!"

I didn't take my wish back. I think it will probably still come true, and we'll both die of natural causes, in old old age.

There is LOTS of hope for your sister, Biddy. More hope than not hope.
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Old 11-16-2010, 12:52 PM   #9
sdh
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Thumbs up Re: Grieving already

Hi. Your sister is sure lucky to have you.
I was just married a week ago to a beautiful lady that while we were dating found that her breast cancer had come back, and since we have been togather has had to have her breast removed and is at pressent going through her chemo and then a year of herceptin.
All I can do is be there for her and love her and keep her spirits up because her attitude will be so important in beating this, and you keep your sanity.
It was a week ago last Saturday that we got hitched and all is right with the world. Just put a smile on your face and fake it till you make it.
Thanks for being there for her.
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Old 11-16-2010, 10:23 PM   #10
Trish
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Re: Grieving already

Thank you for that story Kiri's mum.When I was dignosed with mets in 2006 I told the onc I wasn't interested in the survival stats (they are just sooo dated) but wanted to know that there was at least one person in a similar situation to me who had survived for a long time-say 20 years. He said yes and that was enough for me (the median is not the message as....famously said-chemobrain alert- I've forgotten the name of the famous scientist who said that 18 years after his 18 month prognosis! ). I particularly loved the bit in your story about the lover, the VW and Majorca.
May there be many more relatives and friends like Biddy and sdh.
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 02-05-2011, 06:01 PM   #11
KirisMum
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Re: Grieving already

Biddy, how is Kelly doing?
I so understand your feelings. Lately I have been coming unglued worrying about Kiri, with all the complications she has been through lately, now off chemotherapy and waiting (and waiting) for her mastectomy surgery to be scheduled.
I know when I can talk to her, or even better, be with her, I do much better. I hope you have been able to spend some time with your sister.

Trish, I think that
Quote:
the name of the famous scientist who said that 18 years after his 18 month prognosis!
was Stephen Jay Gould. An amazing man.
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Old 02-05-2011, 09:27 PM   #12
Trish
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Re: Grieving already

Thanks Kiris mum. I too hope Biddy and Kelly are doing well. I'm sure we will hear about your extraordinary Kiri when there is something to report.
Trish
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Old 02-06-2011, 02:05 PM   #13
Jackie07
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Re: Grieving already

It took me a while to locate this thread - I dug up my Stephen Jay Gould book, Questioning the Milennium, and right away couldn't remember which thread had led me to my action. Thanks to the 'search' function...

And then I found this link to Dr. Gould's word. Thought some might like to read it as well:

http://fog.ccsf.edu/~abair/median.pdf


-
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
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

"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; 02-06-2011 at 03:07 PM..
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Old 02-07-2011, 08:26 PM   #14
CindyE
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Reply

I just love the response to "How do cope when your world is turned upside down?" You just do! How very true. Many of us here have faced the big C and are still around to support others. Praise be to God for the strength that we have and the power to help others. I'm often reminded that so many face this vicious foe and we need to be here with words of encouragement, love, and a shoulder for others to lean on.

So chin up girl and face the fight. You can do it!
__________________
Cindy

L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008

Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!



I am calling this my pink journey
Follow my journey into the pink at my blog here

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Old 02-12-2011, 11:05 PM   #15
StephN
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Re: Grieving already

Trish - You may have quoted a play on words. It was Marshall McLuhan in his book "Understanding Media" who coined the phrase "the medium is the message." His works focus on the influence of electronic media on modern peoples.

Media has had a huge influence upon our lives, and this web site is a good example of positive influence.
__________________
"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 02-13-2011, 09:10 PM   #16
Trish
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Location: Melbourne, Australia
Posts: 434
Re: Grieving already

Well this medium is certainly very positive for me. Do you think Marshall McLuhan would see it as a "hot " medium given how engaged we are? Mind you I still love radio.
Would love to know how Biddy and Kelly are going.
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 02-13-2011, 10:18 PM   #17
StephN
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Re: Grieving already

Yes - Biddy - please post on update.

Funny, Mr. McLuhan wrote his works long before the internet or even personal computers were thought of!
__________________
"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 02-13-2011, 10:40 PM   #18
Trish
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Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
Re: Grieving already

I know but I'd love to hear his perspective on social media.
Trish
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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 07-16-2011, 11:01 AM   #19
Biddy
Junior Member
 
Join Date: Nov 2010
Posts: 3
Re: Grieving already

Hi everyone

Sadly Kelly passed away on Monday. Her cancer was very aggressive and didn't respond to treatment. I'm devastated. I don't know how I'm supposed to go on with normal life, yet I know I have to. I still can't quite believe it has happened. Thank you for all your kind words of support.

Biddy
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Old 07-16-2011, 01:35 PM   #20
KirisMum
Senior Member
 
Join Date: Nov 2010
Posts: 186
Re: Grieving already

Oh Biddy I am so very sorry. My heart aches for you. I hope you and Kelly were able to share some precious times in the past few months that will help you get through this. Right now you must just be in a numbed state of shock. It's so surreal when someone we love is taken from us. One foot in front of the other, take care of yourself emotionally as much as you can, reach out and accept help from others. You have my deepest sympathy on your loss. :-((
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