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04-07-2006, 04:14 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Xeloda ?
The lady I do Herceptin with has been on Xeloda and Herceptin for 3 years due to a recurrence to her sub clavicle (I believe) she was originally Stage 2 and recurred 5 mo after finishing chemo. She says that she has been NED all this time and that our onc has just kept her on it to keep the disease at bay. She is just NOW looking at going off of the Xeloda (due to cracked hands and feet) and I was curious, those of you that are or were on Xeloda, what was the longest your onc kept you on it once you reached NED? As I've mentioned before, he's VERY aggressive, I asked our onc nurse yesterday about an ECHO (as I only had 1 prior to starting Herceptin 8/15/05 and no others) and she said he doesn't do follow up ECHO's unless there is a concern (I've only got 6 more treatments until I'm done, so it doesn't matter at this point).
Rhonda
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04-07-2006, 06:29 PM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 823
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Rhonda,
My Opinion only, but yes, I do think it does matter. I know my Onc has my echos done every 3 months. IF I'm not mistaken I think I have read somewhere that it states this needs to be.
Vicki
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04-07-2006, 07:38 PM
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#3
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Rhonda,
I've been on Xeloda for only two months now, but my onc had initially said as long as sympthoms are manageable the usual course (and I understood him to mean when dealing with metastatic disease) is to stay on it until progression. I believe the rational behind this is that with metastatic disease we have to assume that even when NED there is probably microscopic disease and possibly masses too small to be detected by scans, and if Xeloda is causing no adverse side effects it's a good saftey precaution. Ultimately, in that situation, it comes down to quality of life and patient preference. If I reach NED again, at this point I would love a chemo break and be willing to take my chances. But, it's an individual choice.
On the Echo, my onc has kept me on a 6 month schedule. He's been very firm about that.
<3 Lolly
Last edited by Lolly; 04-08-2006 at 03:39 PM..
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04-07-2006, 08:17 PM
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#4
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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I was on the Xeloda for my treatment and am so glad to get off it. I think its a great drug and works wonders but it was hard on me. My hands and feet right now are terrible. My Oncologist told me today that he has women have to be hospitalized because the skin and meat peeling off their hands and feet. This was in the beginning before they knew they had to mess with the dosage on it. I was taking 3,000mg a day and usually by the second week on it, my hands were all rashed and red. This time (my 5th series of treatment) my hands broke out and my feet were so bad I couldn't hardly walk,it happened right away, . I had to wear slippers into the clinic today,it was that painful. At times, I would reduce the dosage myself to control it but it didn't seem to help this go round. I think my system just had too much of it. I think Lolly said that she takes 1,000mg a day and that it has been beneficial to her. That dosage I think I could tolerate but the hand/foot thing hit me hard at the higher dosage. As far as ECHO, my doctor is doing mine every 4 months...sherryg683
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04-08-2006, 01:04 PM
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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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I started Xeloda this past week...2500 mg a day.1500mg in the AM and 1000mg at night....so far just tired!!!!!!!I am truly dragging....must be the magic in the Xeloda/ so I am hoping withh all the extra rest it is doing its thing...I am 14 days on, 7 off and I don't think the onc. is keeping me on it permanently...she said for a couple months/
__________________
"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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04-08-2006, 03:44 PM
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#6
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Sherry's right, I'm on 1000mg daily; 500mg am/pm. It's a low dose but I don't take any breaks. So far so good
Sheila, I was extra tired the first few weeks also, then as usual my system seemed to "adjust" and now I only have my usual tiredness, lol!
<3 Lolly
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