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Old 04-16-2008, 05:59 AM   #21
caya
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Marcia - My knaidlach (matzo balls) are the perfect in-between - and my Dad called them bombs vs. sinkers - My trick is when I make them from one of the mixes, I add extra matzo meal.

Bill - ah , haroses - this a concoction of coarslely grated apples, chopped nuts (I use walnuts), red wine and cinammon - it symbolizes the mortar the Israelites used when they toiled to make the sphynx for the Egyptians. Everybody has their own secret method of making it. My Aunt Norma is the expert in our family and brings it every year in this glass leaf serving bowl.

Marcia - if you want to come up to Toronto, you and the family are more than welcome at our 2 seders - the first night we are at DH's family (14 people), the second night my family - (24)

I've got to get going - I have Herceptin # 16 tomorrow, and I promised my onc. and one of my chemo buddies that I would bring down some of my Passover choc. chip cookies, so I'm baking up about 4 batches today.

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

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 04-16-2008, 06:44 AM   #22
Soccermom
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TY Bill!
Hmmm, maybe I need to go to Cayas??? Caya, My Moms family (the ones that left Europe, the rest perished) originally emigrated to Toronto from Poland in 1913 (before moving on to Phila.Pa in the 20s). I know I have family there but have no idea where they might be...I saw them a few times as a child when they visited the Jersey shore.
Hag Sameach! We were such large family at on e time we would rent a hotel dining hall for Seder. There were 7 siblings and 52 cousins in the 1960ss.Ahhh the good old days.

Sigh....
Marcia
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Old 04-16-2008, 07:35 AM   #23
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Smile

Hey Marcia, that sounds like a good idea. Wouldn't Andi be surprised if we landed on her doorstep for Passover - you
looking for chopped liver and me on the hunt for macaroons
and matzoh with chocolate chips in it. The Club sounds good
too - no dishes to do after the big feast.

I would make the trip except that I'm on another one of
my diets ... egg whites and hershey kisses. Are egg
whites kosher?

I too am interested in learning what haroses and bubbelah are;
also the sinkers/floaters grabbed my attention.
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Old 04-16-2008, 08:58 AM   #24
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So vat else es nu?

Hi Marcia-
We are having a gluten free/dairy free passover. Although I make the best brisket in town - this year we will have organic chicken. Healthier for all.

Seder is always at my sister's house - our Haggadot are ones my sister and mom "wrote". We never get through the whole thing without a lot of laughing. 4-5 Teenagers and and several glasses of Manachevitz - need I say more? No Matzah for us just some for the kids and my brother-in-law. Maybe some rice crackers for us with the Charosis. lol. My sister ordered Gluten free honey cake and I found excellent macaroons at Whole Foods (of course).

For Wine lovers this year Bellenda Prosecco (sparkling) is Kosher for Passover. I don't know what that means except that everyone at Wine House was going crazy and buying bottles. I grabbed one as well - hope my family will enjoy.

Okay - nice to be writing about something other than BC although I have plenty to say on that subject

Happy Passover.
Love
Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 04-16-2008, 01:14 PM   #25
caya
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Haroses - a mixture of coarsely grated apples, cinnamon, red wine and chopped nuts (I use walnuts).

Bubbelah - a Passover pancake, basically egg yolks beaten until thick, mixed with milk, salt and pepper, matzo meal (finely crushed matzo) and then folded into beaten egg white. Then dropped into a buttered pan and fried like a pancake on both sides. There is a real art to making these.

Sinkers vs. Floaters - Matzo balls (knaidlach) are normally made in 2 variations - sinkers - which are more dense and "sink" to the bottom of the soup bowl and -floaters - lighter, airer, fluffier and "float" on the top of the soup bowl. Pink - I have perfected an "in-between" matzo ball, so everyone is happy!!

So that in a nutshell should answer your Passover menu questions. Stay tuned, if you're good, we can tell you about Potato kugel and farfel stuffing...

all the best
caya

( I am exhausted, I baked 13 dozen Passover choc. chip cookies today)
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!

Last edited by caya; 04-17-2008 at 11:43 AM..
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Old 04-16-2008, 02:35 PM   #26
Andrea Barnett Budin
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Wink Hey Frends And Bubelehs...



A bubeleh (in Yiddish) is a term of endearment. It means darling, honey. All my Sisters and Brothers here are bubelehs to me..

Yet Caya has come up with another meaning I have never heard of!
FYI: My great grandparents emigrated from Russia (maternal and paternal). My mom's family came via England and to Atlanta, Georgia. My grandpa Phil sounded like a southern coronel. The whole family had this charming drawl, y'all that was like music.
My father's mom and dad each were one of eight children. They built an apartment house where their Borough Park (Brooklyn) house stood, for all their siblings to come stay (after escaping Europe)! So we too had lottttsssss of cousins, which was a blessing in so many ways. We even had a cousin's club that met annually in a park in Westchester each September. We picnicked and played baseball and laughed.
I was raised to always remember the importance of FAMILY. Of loving, and giving, sharing and *listening to my parents*.
Wishing all a warm and loving, HAPPY PASSOVER from my family to yours. Andi
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'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 04-16-2008, 03:14 PM   #27
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Smile

This is such an interesting and informative thread.
Being the "word" person that I am, I immediately
thought of Hermiracles calling her babies "bubbas".
And I have a Ukrainian friend who calls her grandma
Bubba. I wonder if all these "buba" words are connected
somehow.

Thanks for the info on Passover and your customs. I am
finding it all very interesting and educational.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



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Old 04-16-2008, 04:19 PM   #28
caya
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Pink,

Bubby is the Yiddish work for grandmother. My Bubby to Canada came from the Ukraine in the mid 1920s. So I would say all these bubbas are related indeed.

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

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 04-16-2008, 06:42 PM   #29
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To all who are celebrating Passover, thank you for sharing your beautiful Seder stories and the delicious foods. I especially love Rinaina’s analogy of her Seder stories and the breast cancer journey, how very special. One of my friends has taught me how to cook a great brisket (Seder Style) teehee

I wish all peace and a joyful Pesach.<O</O
Blessings,
Jean
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Old 04-16-2008, 09:05 PM   #30
Leslie's sister
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Happy Passover

Just wanted to wish all a Happy Passover as well. My very best friend is Jewish and introduced me to Seder. It is my favorite Jewish holiday and we celebrate it with her & her family every year. I love the food and hearing the Exodus story. She gets quite creative with the different plagues and has them all at each place setting. As well for us Christians, it ties in so nicely to Easter's Last Supper (most years it even coincides with Easter). Though we won't be able to celebrate this year because of a trip to Boston (yippee!) the book club that I'm in is reading Exodus by Leon Uris and we will have Seder dinner when we meet to talk about the book. I have already finished it and can say that though the fictional part was pretty bad, (Harlequin romance type bad), the historical parts were very informative and make the book well worth reading.

Lisa
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Old 04-17-2008, 06:57 AM   #31
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I'm trying to lose my last 10 pounds on weight watchers. You guys are killing me. I used to haunt the Second Avenue Deli when I lived in NYC. Derma, noodle pudding, pastrami with cole slaw and russian dressing. Yonah Schimmels knishes!!! I'm dying here.
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Old 04-17-2008, 10:48 AM   #32
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Smile

I just watched Martha Stewart and Joan Rivers
make a Matso House. They joined all the pieces
and attached the decorations with melted chocolate.
Martha's turned out a bit nicer than Joan's!

They were really cute - kind of like gingerbread houses.
The decorations were apricots, candies, macaroons etc.

Martha did warn everyone that it can be difficult to cut
and trim the matso bread.
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Dx Aug/05 at age 51
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ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



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Old 04-17-2008, 05:04 PM   #33
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Evenin' ladies..
Just got back (via Amtrak train) from New Orleans. I had to go for a post op appointment with my wonderful breast surgeon. I stay at the Hope Lodge (free) which is an American Cancer Society facility and just wonderful. I rode the streetcars for a bit last night just to relax a bit and visited with the many cancer patients at the Lodge.
Anyway Jazz Fest which is one of the Souths largest and most famous music venues begins next week (I think it runs 7 days)...well becaise Passover coincides with it one of the synagogues in New Orleans is having a JAZZ PAASOVER! They have invited jazz musicians who in town for Jazz Fest to come and have Seder and sing the song portion of the Seder!!! THATS SO COOL...Dayenu sung by a Jazz singer!
Anyway the price os only $10 per person and open to the public if anyone happens to be in NOLA on Sunday...

Glad to see everyone is enjoying our Seder/food stories...sorry mJO for the temptation...buy some matzoh and spread some strawberry jam on it just to satisfy the craving!

Hugs MarPS In the South a "Bubba" is a local
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Old 04-19-2008, 11:54 AM   #34
caya
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Enjoy your seders tonight and tomorrow night - keep the prunes handy.

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

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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