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Old 01-13-2016, 01:52 PM   #1
Andrea Barnett Budin
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Our sister yanyan is no longer on this earth

Yanyan's husband Andy just let me know -- she passed last Wednesday. I am heartsick. She was only 40 years old. With a daughter. A sweet lady, bright and caring. Her Spirit was strong during the ordeal she had to endure through all these years. I know she is now at peace. In heaven.

Her last post was celebrating her 5th cancerversary. I feel my throat closing up. My heart broken. Truly this is just so devastating. Yet how kind of her husband to respond to my email to Yanyan. I was so worried about her. I knew she went to China for immunotherapy. That she was back in California and had severe shortness of breath. That she was in the hospital and didn't know if she should accept that her journey had ended. She understood the gravity of her situation. The drains were helping.

I know she and Karen spoke as they each were looking at immunotherapy and had difficulty catching breath. Pleural effusions can be deadly. I had such a thing and didn't even realize how close to death I was until recently. It was caught early with me and I was taken off of Taxotere. I couldn't take any more.

For Yanyan the drains did not really help. The tumor burden in her lungs was too great to bear was my understanding of what her docs told her.

I thought you would all want to know, of course.

I don't want to ever have to post about the loss of another Sister, or Brother.
Just tragic.

I pray for Joe Biden rallying the troops for serious research into cancer. He is out there gunning for cancer right now.

Sending my love,
Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 05-28-2016, 04:13 PM   #2
norkdo
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Re: Our sister yanyan is no longer on this earth

O.M.G. Thank you Andrea for posting this. I'm stunned. Terrible.
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fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 05-30-2016, 12:26 PM   #3
tricia keegan
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Re: Our sister yanyan is no longer on this earth

Andi I'm seeing a January date on this so not sure how we all missed it until now but thanks for telling us, such very sad news and I know Yanyan had found things very tough these past months. So sorry to lose her but thankful she's now at peace, may she RIP.
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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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Old 05-30-2016, 12:36 PM   #4
Andrea Barnett Budin
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Re: Our sister yanyan is no longer on this earth

Both and I and someone else posted about yanyan.

She died not long after Karen (KDR). Her lungs were also filling with fluid and she was having difficulty breathing. Her dad urged her to try immunotherapy in China. She traveled there and did it. Returned and was soon hospitalized in Cali. The cancer had spread.

She considered options and decided it was all so overwhelming she made the difficult choice not to proceed. For herself and for her family. I was broken hearted when she told me.

A few wks later I emailed her to check on her. Then 5 days later, I emailed her again. Her lovely husband had the thoughtfulness to have noted my emails and let me know of her passing. Truly a special person, as one would expect. Yanyan was a very special woman. I grew attached to her. Her loss is stunning and deeply felt.
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 06-08-2016, 07:53 PM   #5
Catherine
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Re: Our sister yanyan is no longer on this earth

I, too, had missed this. So very sad. Thanks, Andi
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Catherine


Found my own lump in the shower
April 06 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
13 years and no recurrence as of April 2019
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Old 06-09-2016, 09:27 AM   #6
Donna H
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Re: Our sister yanyan is no longer on this earth

Cancer just sucks.
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Old 06-09-2016, 10:34 AM   #7
jra40
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Re: Our sister yanyan is no longer on this earth

Damn not fair, feeling more defeated every time we lose another....
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11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 06-12-2016, 12:53 PM   #8
Andrea Barnett Budin
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Re: Our sister yanyan is no longer on this earth

Yanyan passed just a few wks after Karen (KDR).

I grieve with every one of you. I've been in touch w/Karen for 5 yrs often. Email, FB and PM, phone. She felt like a close friend though we never met.

As a 20 yr survivor I have to say share this with you. I once showed up at the chemo room (during my 10 yrs of Herceptin) where I was a regular and knew the nurses like dear friends and most of the patients who slowly disappeared and I'd ask and ...

The nurses knew to seat the newbies or the especially distressed patients next to me. They knew my cheery disposition and my unquenchable need to inspire and lift others up. This one day, the social worker who I didn't really see often or talk with, cause I was blessedly not in need of her help, she looked at me and brought a chair up next to me to talk.

What's going on?? What do you mean. She saw my face and apparently I wasn't my usual self. I searched for the reason I was feeling down. I suddenly realized all the many Sisters I'd lost in the last year, and of course all the other years before that, on Long Island and in Florida. I was the one who brought fresh bagels and cream cheese every time my husband Paul and I came. And for 2 yrs I was a weekly Herceptin person, before the ev 3 wk regimen came into being, Every single week we stopped first and bought the goodies to bring.

So that day I fully realized how sad I was feeling. Not aware a single detection of it was showing, but the social worker was trained and keen and she saw it. She suggested that when I go home I write down the names of those I'd lost and then take my finger and run it across their name and close my eyes and say a prayer for each and every one.

Seemed simple enough. Yet not enough. But was I wrong. I wrote each name. And then thought of another. And another. And another. And I looked at the paper (and 8 x 11 sheet I'd chosen) and I had dozens and dozens that I remembered, had taken into my heart, and lost.

I began running my finger across the first name, closed my eyes and said a prayer for them. Then chatted with them. Told them how I missed them, would never forget them, knew they were at peace finally with no pain, only joy. And that I also KNEW that we would meet again, on the other side. Cause I know death is not the end of our story. And I KNOW they each still are. They still exist.

After a half hour or 45 minutes and some tears and aching in my soul I finished and I miraculously felt a bit better. I'd unburdened my heart a bit and got to talk to each again.

Please don't feel defeated Ladies. Please move forward with resolve and tenacity. Turn the pain and the sadness into strength and greater determination. Use the power of your thoughts. What you focus on all day will become your reality. So let go of all fear and worry and concentrate on seeing yourself far far into the future. Do that every single day.

I began on Day 1 of being dx telling myself I AM HEALTHY AND WELL. NO MORE CANCER. I DO NOT HAVE CANCER. It was my goal. I needed to make my Intention and my Expectation vividly clear. I WAS TALKING TO MY BODY.

It's your body's job to do as you request. It takes it's cues from your thoughts, your words, your mental images, everything you whisper. It has no sense of humor. So don't say This is killing me. Say I AM STRONG, BRAVE AND DETERMINED. I expect to live for a long long time. To see my little one graduate, be Bar or Bat Mitzvah, whatever your dream is. A joyous occasion you do NOT want to miss. A place you are INTENT on being present for!!

You now our Sisters who've moved on would want us to do that. Do it for them, in honor of their radiant Spirits and for Yourself. You deserve that.

Use the power of your thoughts to bring your desired outcome to you. Make it manifest in your life. Not what you fear most, or worry about a lot. But think of what you want. Plant that seed. And see it through to fruition.

With love,
Andi

Please check out my years of posts and threads. Go to SEARCH and type in ANDREA BARNETT BUDIN. It's my hope my words will lift you up and feel you enveloped in Love and Empowerment...
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 06-12-2016, 06:52 PM   #9
waterdreamer
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Re: Our sister yanyan is no longer on this earth

At the end Yanyan did an infusion of Opdivo (which she and her husband had to pay for). Her oncologist also put her on Doxirubican, she died during her first cycle. She left her young daughter behind, who she loved and spoke of very fondly. Her husband was an amazing support. I miss her.
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Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 Thoracentesis 1500 ml drained from right lung.
June 2016 CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 06-13-2016, 06:58 AM   #10
jra40
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Posts: 260
Re: Our sister yanyan is no longer on this earth

Andi - Thank you for your story and your inspiring words! I have been trying to think positive and move forward - just need to be reminded to do this when I see the losses of our fellow Her2 sisters. I'm five years out and still struggle with Cancer's tight grip in my mind at times - it's probably a tougher battle for me than the physical part. Staying positive is hard but I can never let cancer defeat me!
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 06-16-2016, 12:52 PM   #11
lkc Gumby
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Posts: 434
Re: Our sister yanyan is no longer on this earth

oh, i am so sorry to read this. another angel... so sad,
__________________
Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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