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Old 01-29-2013, 08:56 PM   #1
DianneClaire
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Post Writer looking for participants to share stories

I am working on a project about women and their breasts. Looking for women of all ages and circumstance to interview. The project is to be completed and performed in conjunction with National Breast Cancer Awareness month in October.

Thank you in advance for your consideration of my request.
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Old 01-30-2013, 07:13 PM   #2
Laurel
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Re: Writer looking for participants to share stories

Give us some more info., Dianne. We are a gun-shy bunch!
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Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
8 Years NED
I think I just might hang around awhile....

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Old 01-31-2013, 02:00 PM   #3
DianneClaire
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Re: Writer looking for participants to share stories

Hi Laurel. Absolutely understand need for caution. I too am hesitant to share details of my project in a social network enviornment in order to protect my intellectual property. I have a document I use to protect myself and the identies of participants. That said, the general concept is a piece bassed on interviews with several women covering the subject of their breasts. Stories will be a compilation of several womens experiences incorporated into several characters. It is not intended to have one woman's story as a subject. The end result is to have an entertaining and educational overview of girls/women and their relationship to their breast. Does this help?
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Old 01-31-2013, 02:27 PM   #4
NanaJoni
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Re: Writer looking for participants to share stories

I am very wary of a "writer" who can't spell - based, not bassed, although I know we're not all the best typists. However, I would advise our members not to respond to you without additional assurance of safety for both identities and medical info. Identity thieves are very clever and unconcerned about those they target. Dianne, you might find a better option to get in touch with potential subjects either through a local oncology office or the American Cancer Society. Those groups could certainly vet you and your project prior to you being allowed to contact bc patients or suvivors. I caution all our forum members NOT to respond to this request. An on-line request for this type of contact only protects the person who is asking for your info and offers no protection to you, the subject.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 01-31-2013, 03:56 PM   #5
DianneClaire
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Re: Writer looking for participants to share stories

Thank you for your response and contact recommendation. Oops on the typo.

Health and or clinical information does not have a place in this project. Additionally, I would hope that those being interviewed will only relay information that they are comfortable with sharing. The choice to share is voluntary of course, and I would not and have not shared information provided to date. An agreement is provided to interviewees prior to interview. This is done primarily to protect, me as the writer and my intellectual property, and the participant to protect their anonimity.

I respect your concern for the women who may reach out to me, though I am not clear as to what information you think would be provided would be of harm.

If you would like to call me I can be reached at 818 753 3914

-Dianne
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Old 01-31-2013, 04:01 PM   #6
NanaJoni
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Re: Writer looking for participants to share stories

While I appreciate your attempt to assuage my concerns - if your "agreement" asks for name, address, birthdate, phone number - that is enough info to steal someone's identity. I stand by my concern with soliciting this kind of participation by internet contact.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 01-31-2013, 04:03 PM   #7
DianneClaire
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Re: Writer looking for participants to share stories

It does not, and the interviews are held face to face. Which is why I looked for women in Southern California, where I reside.
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Old 01-31-2013, 04:04 PM   #8
NanaJoni
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Re: Writer looking for participants to share stories

Something many of us do is put our city and state in our signature info. You didn't include this when you registered here?
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 01-31-2013, 04:38 PM   #9
IrvineFriend
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Re: Writer looking for participants to share stories

Thank you Joni for looking out for us. I found the "an entertaining and educational overview of girls/women and their relationship to their breast" very bothersome. So sad to hit on a site where we seek support from each other as we go through this nightmare. The person wants to protect their intellectual property but not respect the meaning and purpose of this site.
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Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 01-31-2013, 04:50 PM   #10
DianneClaire
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Re: Writer looking for participants to share stories

Perhaps I do not understand, this is the reason I am writing my book. It is to help people understand the relationship women have with their breasts. I am seeking help. Again, I have listed my phone number, and you are more than welcome to reach out to me directly.
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Old 01-31-2013, 05:47 PM   #11
StephN
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Re: Writer looking for participants to share stories

DianneClaire -

You did not say in the earlier posts that you wanted to speak with women in southern California. The initial posts were so vague which is why they were suspect.

Do you even realize that every woman on this web site has had some kind of surgery on her breast/s? We are ALL missing some portion if not all of one or both breasts.

We are fighting a terrible cancer that has caused this situation. I don't think you have come to the right place for your essay or whatever you are doing.
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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.
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Old 01-31-2013, 06:36 PM   #12
NanaJoni
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Re: Writer looking for participants to share stories

Dianne - I guess maybe I seem to be a little hard on you - but if I had to talk or write about "my relationship with my breasts" it would go something like this: We were together for almost 50 years and they betrayed me terribly so I had to let them go. Just dump them. And since then I've had relationships six new breasts but none of them have been satisfactory. Guess there's nothing like that first one. So now I'm moving on and have just "settled" for my current breasts -something I said I'd never do.

Guess some of us just end up with something of a twisted sense of humor. But it gets me through the tough times. I do wish you luck with your project.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 02-01-2013, 03:38 PM   #13
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Re: Writer looking for participants to share stories

Joni!
Wow! There's some fire in my friend Joni! You go girl!
Thanks for taking the time to look out for all of us.
I don't know what exactly This person had in mind...but I do know that she doesn't have a clue how inappropriate it was for her to invade our safe place in order to make money. I don't care how much "awareness" her work raised...this is not the place to mine for information.
Your suggestion about checking with the American Cancer Society, or an oncology office was a good one.
Steph, and Julie, you guys were great too!

I honestly wonder why anyone would find a cancer survivor's "relationship with her breasts" whatever the he## that means...to be an entertaining subject. (Though I loved the way you worded your last response Joni!)

No one loves to laugh more than I do...and I even tend toward gallows humor sometimes...but that's me talking about me, not someone who hasn't walked in my shoes "entertaining" people at the expense of BC victims. Rubs me the wrong way too.

If I ever do get up the gumption to write a book about all my BC adventures, I'll be sure to put a little note in the beginning letting everyone know that while laughter is the best medicine (for me anyway) there is absolutely NOTHING funny about breast cancer. Nothing. We choose to laugh...otherwise we'd cry all the time.

Thanks again for looking out for all of us.
Denise
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Old 02-01-2013, 03:58 PM   #14
NanaJoni
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Re: Writer looking for participants to share stories

Well, Denise - you are my inspiration. Your humor and strength are examples to us all. I pray Ms. Claire will never have to join our ranks and understand our outrage at her seeming cavalier attitude. I know what you mean about "gallows humor" - I get some odd looks sometimes when I joke about the last three years and its ups and downs. But here we are and as you said - this our safe place. Hope you're feeling better each day.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 02-13-2013, 09:25 AM   #15
jcarolsapp
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Re: Writer looking for participants to share stories

visit my site
www.caringbridge.org/visit/judysapp
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Old 02-15-2013, 03:51 AM   #16
Jackie07
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Re: Writer looking for participants to share stories

Dianne (and/or Judy Sapp?),

If you are looking for some type of 'dramatic' change of my (I can only speak for myself) relationship with my breasts after the breast cancer diagnosis, then my answer is 'no' - there's no change whatsoever!

I was flat like a wash board (or as my 2nd Brother had commented once while I was in high school: "flat like a runway in the airport!"

I've been slim and fit - having participated in track and on the basketball team all the way through college. But I do have cancer genes - not known until having twice been diagnosed with two different types of cancer and after more family cancer cases had surfaced.

Coming from a culture where girls are treated equally as boys (had only worn make-ups in school dance/music performances and special occasions such as my wedding; was only wearing lipsticks while working as a professional), the size of the breasts has never an an issue (though I did/still do wear [the same] padded bras to avoid unnecessary attention.)

There must be a whole lot of women loving their breasts very much - I learned that from my surgeon's insisting on a lumpectomy in 2003. 4 years later, after the mammograms had been misread continuously, the recurrence was finally confirmed by the mammogram ordered by the original surgeon after I had requested an appointment with her.

This time, I insisted on a bilateral mastectomy. Did I hate my breasts? No! Absolutely not! I was just taking the necessary precaution as two other family members had been diagnosed with other types of cancer in between my first life-saving (brain tumor) surgery in 1990 and my last chemo treatment (for breast cancer recurrence) in January, 2008. I also did a prophylactic hysterectomy/oophorectomy in 2010. Did I hate my uterus or ovaries? No! The genetic test result and family/personal cancer history were the reasons why my insurance plan had approved the procedure.

Did I hate my Mother/Father? No! absolutely not! Freud was not a big influence in the culture where I came from ... Even though I've inherited bad genes from them, I don't feel anyone needs to be held responsible for what I've been through!

In a few days I will celebrate another birthday. My bone (density) scan last month was normal and I'm feeling fine.

Still can't figure out any 'relationship' issue ...
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Old 02-19-2013, 09:23 PM   #17
Muzzy
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Re: Writer looking for participants to share stories

Hi - I was diagnosed in May 2012 - and am just back to work - and trying to get back to life. Would you like me to send you more information? Do you have an e-mail to send it directly to?
Take care,
Marilyn
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Old 02-23-2013, 07:54 PM   #18
pwiswell
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Re: Writer looking for participants to share stories

Dianne, I too think you have come to the wrong place to interview women. There is nothing "entertaining" or "humorous" about what we are going through. While I have a great sense of humor, it does not extend to the stage IV cancer I have been fighting for the past 10 years.
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Old 03-24-2013, 05:30 PM   #19
Redwolf8812
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Re: Writer looking for participants to share stories

What an odd request on this type of board. However, I just can't stop myself - ALL of my "lady parts", including breasts, uterus, and ovaries, were removed thanks to cancer. And thanks to a stage 4 diagnosis and a probably-earlier-than-normal death, they will NEVER be replaced. So there's a relationship shot to hell for ya. Of course, I've got a glorified body to look forward to upon the return of Our Lord! So you're free to ask me then!
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...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)

Penny

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