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04-24-2007, 09:18 PM
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#1
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Taffy, I was on possibly the lowest Xeloda dose ever, 500 mg twice daily for a year for my stubborn lymph node mets. Had a partial response and then stable for a good amount of time; since then have moved on to other treatments. I had NO side effects on this low dose. Not recommending such a low dose for anyone else, just emphasizing what Patty and Sheila say, lower doses = fewer side effects.
If you're having second thoughts about more chemo at this point, with a complete response, and your concern is a few tiny nodules that your onc feels are dead cells, why not have one or all of them biopsied? My surgeon did that for me while performing a biopsy on a node, just zipped off a suspicious area of skin which did turn out to be malignant but as he excised the whole thing and I then went on chemo, it's never returned...Just an idea.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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04-25-2007, 10:32 AM
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#2
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Member
Join Date: Apr 2006
Location: UK
Posts: 20
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Thank you, Patti, Sheila and Lolly for your words of encouragement. I have been given my tablets today and will start them tomorrow. I am supposed to take three 500mg tabs and one 150mg tablet twice a day. This seems rather a large dose but I suppose it varies due to height and weight. I am 5' 7'' and weigh 126lbs. Here's hoping I don't get too many side effects!
Once again ladies thank you for replying to my post.
love
Taffy
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04-25-2007, 01:59 PM
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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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Taffy
I take 3, 500mg in the morning, and 2, 500 mg at night. I am 5'6" and weigh 150#.....25 of that thanks to Herceptin! If the dose seems too much or too many side effects, they can decrease it with it working just as well....just remember to take it with some food in your tummy....it can cause terrible heartburn if you don't...even if its some crackers, pudding, jello...just something! I am hoping you will find it easy to take as I have.
__________________
"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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04-26-2007, 02:45 AM
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#4
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Member
Join Date: Apr 2006
Location: UK
Posts: 20
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Thank you for the tips about the food, Sheila. You're a star! I have just taken my first dose after eating a bowl of porridge and some toast. When do the side effects usually kick in? Is it on the week off or do they start anytime? I guess I'm sitting here waiting for something to happen ..... !
love
Taffy
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04-26-2007, 04:58 AM
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#5
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Taffy
I seemed to feel a little more tired the week I was off....maybe all those pills! Also, remember to drink plenty of water, Xeloda made me thirsty so that wasn't a problem. I have to get my blood counts checked after being off a week...do you? So far mine have been fine. I think you will do great on this with little or no side effects...the hand foot syndrome seems to be cumulative, so more prevelant after taking it a while....my fingertips do crack and get sore, so I use plenty of Ahava lotion on feet and hands...it is made in Israel, but you can purchase it at www.deadseaminerals.com
....it is shipped from Israel....I tried many things and this is the only one that worked for me. I also wear comfy shoes...flip flops....they seem to work the best and make my feet feel good.
Hope this helps. One more thing, they do tell you if you develop diahrrea from it, call the Dr. as they will reduce the dosage...I never had any problem.
__________________
"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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04-26-2007, 09:38 AM
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#6
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Member
Join Date: Apr 2006
Location: UK
Posts: 20
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Hi again, Sheila!
Well it has been a few hours since I swallowed my first dose of Xeloda and I am still here! No side effects so far but of course, I realise, it is early days yet. As you say, the week off may be the testing time. Like you, I am on for 14 days and then 7 off. Strange that you should mention thirst as I've been more thirsty today. I've taken plenty of fluids anyway.
Thank you for recommending the Ahava lotion, Sheila. I shall have to give that a try. At the moment I am using Compeed for prevention and also Neutragena Comfort Balm. I don't know if these are available in America though.
I'm so pleased that you are doing so well. You've been through a lot, looking at your signature, so I'm really happy that things are going well now. Keep it up, Sheila, I'm rooting for you!
love
Taffy
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04-26-2007, 06:11 PM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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LOL, thanks for starting this thread Taffy - this will be me tomorrow or Monday after I take my first Xeloda... You asked all of my questions for me and now they are already answered!
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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