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03-20-2007, 05:58 AM
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#1
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Senior Member
Join Date: Mar 2007
Location: Italy
Posts: 32
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New entry from Italy!
Melinda, very kind, told me I've post my first thread in the wronge place! Now I paste and copy it here! Thank you girls, you're great!
I'm Malena from Italy (sorry since now for my english)! I'm 37 (OK, I'm actually 36, 37 in May.......), I was diagnosticated in sept 05, I have mastectomy in feb 06 (ductal, 4 cm). I had 4 chemios before the surgery and 4 after the surgery. No rads. My cancer is hormone negative, but is HER2 positive. This seemed good for me in a first time.
I started Herceptin in July 06. I was happy because in italy herceptin was a very new drug (our government gave in january 06 the permission to use it on no metastatic woman before the approval of the european community). Unfortunately after 2 infusion of the drug I had a heart damage (I went to my local emergency room with 15% EF......). So I had to stop immediatly with herceptin.
Now my heart is OK, but I feel with no other changes to stop the cancer.......
I found your site and It is great!!!!!!!!
Malena
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03-20-2007, 08:40 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Welcome! you will find alot of support and valuable information and insights here!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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03-20-2007, 08:48 AM
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#3
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Malena
Welcome to our group, here you will find love and support and someone who has been in your shoes. After being off Herceptin for a while, you may be able to go back on it as your heart strengthens. Did you have AC chemo prior to the Herceptin? That might have pushed the cardiotoxicity over the hill...time may change that.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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03-20-2007, 09:31 AM
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#4
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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Ciao Malena
Welcome to the best site in the whole wide world! It is good to 'know' you.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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03-20-2007, 10:16 AM
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#5
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Senior Member
Join Date: Oct 2005
Location: Boise, Idaho
Posts: 758
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Malena,
Please do not apologize for your English. I absolutely adored your post. I can assure you I would not even begin to start if I had to do it in Italian. However, I can absolutely cook in Italian! Welcome to the site. You will find lots of support and hope here.
Love & hugs,
Marlys
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03-20-2007, 10:50 AM
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#6
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Guest
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Where in Italy?
Hi Malena,
As others have suggested, you LVEF may come back up now that you're off herceptin. And then perhaps you can go back on herceptin. Some other things you might try:
25 grams of ground flaxseed every day and also flaxseed oil
(trial in Canada showed that flaxseed muffins suppressed the HER2 protein). I grind the flaxseed every three days or so to be sure it's fresh and add it to my morning oatmeal. It tastes best if you mix it in and then add lots of skim milk.
Also fish oil
Lots of olive oil (some studies in the US and Spain have shown that olive oil supresses the HER2 protein)
I wonder where you live in Italy. We lived in Umbria for a number of years, and have also lived in Venice and Florence, but mainly Umbria.
Also, perhaps you can answer a question. I've been trying to find out for six months if herceptin is approved for a cancer of 5mm, or does the cancer has to be at least 1cm to get approved for herceptin. I have medical insurance in Italy but have not returned mainly because I don't think I can get herceptin there. If you don't know the answer, don't trouble yourself.
And welcome!
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03-20-2007, 11:09 AM
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#7
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Senior Member
Join Date: Mar 2007
Location: Italy
Posts: 32
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When I had the heart problem the EF was very low (15%), the onc thinks is a high risk for me start again with herceptin. But in case.....(obviously metastasis)!
OK for flaxeseed! No problem for oliveoil (we use a lot in Italy).
But not fish oil, I'm vegeterian!
I live in Gorizia, It's a little place near Slovenia.
I don't know if there is some problem to have herceptin in Italy with a less than 1 cm cancer, I'll ask to my onc. But normaly Italy follows the European decision.I'll try to find it out.
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03-20-2007, 12:51 PM
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#8
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Guest
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Thanks
Malena,
Thanks, Malena, that would be great if you can ask your oncologist.
Do try the flaxseed. My tumor markers were elevated even despite my small cancer and stayed that way although I was on herceptin for months. It wasn't until I started with the flaxseed (faithfully every day) that my markers went down--not where I want them to be but still down. It can't hurt as it's good for lots of other things as well.
You might also try taking tumeric, either natural or in pill form.
There have been some recent studies regarding pro-Vitamin E, in Australia, that also showed some suppression of HER2. You should be careful, though, with Vitamin E as it also has its downside.
And you might try CoQ-10 for heart. Lots of others on this site swear by it.
Good luck.
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03-20-2007, 08:45 PM
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#9
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Senior Member
Join Date: Jan 2007
Location: Media (Wawa to be exact), PA
Posts: 104
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Happy to see you found the forum
Malena,
I am so happy you took my advise. Reading from the posts you have already gained more sisters than what could fit around my dining room table! We welcome you with open arms and hearts. Already I see that you have more than just BC in common with us.... Italian, food, and possibly neighbors in common with Grace. Welcome again. Ciao
Melinda
__________________
DX BC 12/06
tumor .9
Lumpectomy 1/8
Mammosite radiation completed 2/10
Stage1/Grade 1
clear Margins /Nodes Neg
ER+
IHC +2 Fish +
ONCO 23
Started TCH on 3/2 for 6 rounds of TC once every three weels and a year of Herceptin every 3 weeks -
Finished everything and now on Aromasin
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03-21-2007, 04:35 AM
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#10
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Buone Giorno Malena
Welcome to our board. It is so nice to "meet" you and all the way from Italy.
I just think its amazing that we get to speak while being so far away to all of our sisters (sorelle's) all over the world.
I am sorry that you had troubles while on the Herceptin. Hopefully you will be able to get back on it in time. I was on it for 6 years and am now on the Tykerb/Xeloda trial.
I was in Italy (Cortona & Positano) last year an loved it so much. I can not wait to go back as we had a wonderful time and the people there were so warm and wonderful.
I am also Italian/Spanish but grew up in Tampa, Florida in the U.S. so it was a wonderful experience to visit your country.
Have a great day Malena and hope to talk to you again soon.
Take care
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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