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08-10-2007, 06:12 AM
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#1
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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OFF AVASTIN for now :(
After my visit to the oncologist yesterday, I was taken off Avastin for an undetermined amount of time...I seem to be having bleeding problems with it...nosebleeds to the tune of 12-15 a day, gums bleeding, and then of course the high B/P which I am now on medicine for. Being off it will also allow me to get some dental work done in a couple weeks (my onc. wants me off it a month before). So for now, it will just be Taxol and Herceptin...I think I am beginning to hold a record at my chemo center...which is good and bad...it means I'm still here, but it does get old. I have been a constant chemo center patient for 4 years now....there is a big part of me that wants a normal life back, but I know that is not to be. Yesterday was #7 of 12 on the Taxol....I thought only 5 more to go, but the onc. said I may stay on it longer. I am dissapointed that I have put on 9# from the Decadron IV that I get each week....even the Dr. said I was "puffy"...I guess that would be a nice word for plump??? Does everyone gain on this stuff, and does the weight gain continue while you are on it....and most important, does it leave after? Probably trivial questions compared to some on this board, I guess I am just having a chemo downer day. Thanks for letting me vent.
__________________
"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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08-10-2007, 07:10 AM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Gee'z Sheila....you've earned tons of hours of venting time!!! 4 years! I'm creeping up on 2 years and that seems long! I'm glad you got off the Avastin to relieve the bleeding problems. Must have been awful!
I'll be thinking good positive thoughts for you as you travel the Taxol & herceptin road!
I was "puffy" the whole time on chemo (all kinds). I'm not sure about all the other meds, but everything we take seems to have pluses and minuses! The puffies went away when I just take herceptin....which I hope I stay on forever!!!!
Much love and hoping you have a wonderfully blessed day!
ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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08-10-2007, 07:24 AM
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#3
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Senior Member
Join Date: Dec 2006
Location: Massillon, Ohio
Posts: 247
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Hope that you enjoy days of bloody nose free days. The Taxol I remember cannot be any fun. I had some bloody nose (more crusty bloody) on taxol. I gained 15 pounds while on chemo and lost it, when I got off the steroids. What I hated more was that my face broke out from the steroids. It was so bad that I did not even want to go out in the public. I hope that your body enjoys being off avastin, and I am sure the nurses would miss you if you were not there for treatment. I just recently switched to a triple dose of herceptin and I swear they are starting to forget my name already.
__________________
Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009
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08-10-2007, 08:22 AM
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#4
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Oh Dear Sheila,
You vent away sweetheart. I can't offer anything to your post as I haven't been where you are, BUT, I can offer you a HUGE CYBER HUG and prayers for God's Peace and Love to HOLD YOU CLOSE.
Love you "sister"
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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08-10-2007, 08:37 AM
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#5
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Dear Sheila,
I know how you feel I have been on constint chemo for six years now. I forgot what a normal life is lol. I did gain weight with the decadron too but I am sure that will go away once you stop. I am sorry about the Avastin but use this time to get your strenght up. You are in my thoughts and prayers all the time.
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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08-10-2007, 10:19 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Sheila, sorry this has given you so many problems! I remember always having bloody nose, gums, etc. with Taxol, adding the Avastin to this was just too much I guess. But as you know, Taxol with Herceptin is pretty potent stuff and maybe the Avastin you have had so far will help anyway. And lucky you, now you get to have that dental work!
Don't even go there with the puffy! I'm at a lifetime puffymax and was seriously disappointed when I didn't lose some of it switching to Tykerb.
And puffy or not, you're still BEAUTIFUL! Go for the record dear - make them have to give you your own gold plated chair. Plus a crown since you are queen of the chemo center.
Take care, friend!
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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08-10-2007, 01:02 PM
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#7
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Big Sigh Here
Hi Sheila,
I read your post and it just made me heave a sigh, I guess in frustration for all you are going through. 4 years???????? I would so like to be there just to give you a huge hug. Better yet, let's get a bunch of us together and go to some great spa and rejuvenate and replenish for a couple of days.
I know my 4 labs are good company for me when I am down, as I am sure your labs are for you - but HEY! sometimes we need more!
Maybe this little gap in time away from Avastin will shore you up and be just what you need! I really hope it is!
My Love to you, Donna
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08-10-2007, 03:08 PM
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#8
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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A little respite to see what's what
That is how I would look at it. Plus I can't imagine SO many nose bleeds, etc. With Taxol & Navelbine I had them every once in a while - would just be sitting down and feel the warm sensation of the blood starting to run. Did not know which drug to blame it on as I had the two. And I stopped them both at the same time. My gums bled little as I used the Biotene toothpaste AND mouthwash and took Glucosamine, which will help your gums.
My friend who took Avastin with Abraxane had the blood pressure problems as well; it has taken the better part of a year to get it under pretty good control with much lower med dose.
Taxol is also hard on the peripheral nerves so I hope your feet are doing better than on the Xeloda.
You may want to switch to one of the other new drugs like Sutent if it is avail.
You need to stop at a costume/display/party store and get yourself some big plastic sparkly rings and a crown to wear to your next treatment. Oh, and don't forget a scepter! Also make yourself a gaudy velvet cape.
P.S. You KNOW you have been going to the treatment center too long when the gal who empties the garbage, etc. tells you she has not seen you lately! True story folks.
__________________
"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.
Last edited by StephN; 08-10-2007 at 03:11 PM..
Reason: add P.S.
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08-10-2007, 03:24 PM
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#9
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Steph
You are sooo right....yesterday, I guess I was in a daze, and when I signed in for my blood draw...I forgot to put my last name...no problem, they knew who it was...as do the girls who do the vitals, as do the pharmacy techs, the cleaning ladies...my new friends...all of them at the chemo center.....I must admit, I have met some amazing people there over the years, each one has been an enrichment.
__________________
"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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08-10-2007, 08:34 PM
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#10
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Senior Member
Join Date: May 2006
Posts: 144
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Hi Sheila,
I hope you feel better off the Avastin and the Taxol & Herceptin do their job. I had bloody noses on Herceptin, but only a couple of times a day, and not every day.
Are you just getting decadron via IV or also taking pills? I'm doing weekly TH (also completed 7), and just get it via IV. I had heard about weight gain, but have not had any. Maybe because I've had intermittent GI problems.
My doctor has mentioned 16 weekly treatments. Is your doctor saying TH indefinitely or recommending a number?
take care, Anna
__________________
- Anna
Stage I - DX 9/2005 ER/PR-, HER2+, grade 3, DCIS, IDC multi-focal (1.05cm)
DD 4 A/C finished Jan 31, 2006
Herceptin weekly finished Jan 31, 2007
recurrence to chest wall on last month of Herceptin
Stage 3B - 3/15/07 - 2 carcinomas in dermal lymphatic
Rads finished 6/5/07
12x TH finished 9/10/07
12/07 - Clear scan!
3/08 - 4 month Melatonin trial
1/09 - osteoperosis - start Alendronate
2/09 - 4-month Simivastin trial
3/13 - take drug holiday after 5 years of Alendronate
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08-10-2007, 08:43 PM
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#11
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Sheila,
Sounds like the Avastin is really playing havoc with your system. Maybe it's a good thing you get a break from it so that you can get the dental work done. I'm on Taxol and get the Decadron IV before my treatment. I've gained weight but I don't have the moon face like I did when I was on the Taxatore. With the Taxatore I was getting the Decadron pills the day before the day of and the day after. Now with the Taxol I just get the IV bag of Decadron. I'm gaining all my weight right around the middle -- spare tire if you know what I mean. I figure it's a small price to pay if the drug is going to work. I'm not happy with the weight gain I gained 2 pounds in a week! At this rate I'll be the fat lady in the circus in no time. Hang in there I think it will get better.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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08-10-2007, 09:02 PM
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#12
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Senior Member
Join Date: Oct 2005
Location: Sydney Australia
Posts: 105
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weight gain
Hi Sheila,
I'm sorry to hear about the nose bleeds,hopefully you will get a rest from them now. I have finished my Taxol /Herceptin combo 5 weeks ago. Now only big H and a new A.I., Aramosin. I put on a couple of kilos from mid March to early July and I haven't even begun to look like shifting them. Normally I swim and lose kilos doing that, but stopped with the chemo. Now we have a couple of very virulent strains of flu circulating this winter and I am not ready to go back to swimming because of this. I was secretly hoping that the next combo, Tykerb/Xeloda might shift it, but no, not according to Chris! Anyhow, there is more of me to love I suppose.
Take Care
Roz
__________________
diagnosed June 03. Rt sided Inflammatory BC in rt lower quadrant. 7cm tumour. Also 3 DCIS. 3 rounds of EC, mastectomy with axillary clearance (12 nodes+ of 19). 1 more EC. 5 weeks of rads, with weekly booster to attack skin lymph involvement. 4 cycles of Taxol. Tamoxifen.Recurrence December 04, Herceptin started early Jan05,+ Arimidex.
NED 26 mths. Recurrence early Mar07. Taxol added to Herceptin. NED. Will have total of 6 cycles, then Aromisan and Herceptin. Early Oct 07, recurrence to the pesky right upper lobe, with some pleural thickening upper rt hemithorax. T/X now the treatment. May 2008, Taxatere and Herceptin for lung recurrence
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08-11-2007, 01:04 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Sheila,
Hopefully a break will be just what you need to get things on an even keel, give you a chance to get the dental work etc. So sorry you are having difficulties. Wishing you strength and keeping you in my thoughts and prayers.
As for weight gain, I've finally adoped the attitude that I often feel as if there is not enough of me to go around...so I'm making more!
________
LIVE SEX
Last edited by sassy; 08-22-2011 at 09:26 AM..
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08-12-2007, 03:05 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Sheila-
The symptoms usually do abate once you are off the treatment - I was on avastin and didn't experience the level of bleeding, but there was certainly some...
As for the decadron, that weight gain would also decrease once you are off it. You are getting taxol, while I am getting abraxane, but I am getting decadron as well as a pre-med. I've been craving sugary food (FRUIT LOOPS rule!), and other sweet foods, I'm trying to watch my weight, but I know some of it treatment-effected, and there is only so much I can do about it.
I hope you feel better...
Kind regards,
__________________
Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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