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diane1w
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Topic: Xeloda Posted: Jul 27 2008 at 12:06am |
Hi
I am living in the UK and have just started Xeloda, however I have just read that this treatment on it's own without any other drugs does not work very well.
Has any of you guys been on Xeloda and if so did it work, if so how long for?
Appreciat you help
Diane
xx
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primary dx 2006 - mar
lumpec/chemo EPI/CMF & Rads
secondaries dx - feb 2008
Lungs,liver, chest wall and supervasular lymph node
Taxotere x 6
Crrently on 2000mg twice per day of Xeloda.
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ljmiller
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Posted: Jul 29 2008 at 7:32am |
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I have been on Xeloda and Tykerb now for almost 2 months. My scans just recently came back with only slight improvement. However, the dr. reduced my dosage to 3 a day instead of 4, and now has taken me off of it completely due to the side effects I'm having. My feet and fingertips are dry scaly and sore. I did not even consider this to be a side effect given that the taxotere I had been on caused my fingernails to fall completely off. I was told we may come back to it at a later time. I will start a new regimen of Abraxane and Navelbine in a few weeks. (Not sure if this helps you any, but thought I'd let you know)
Leslie first dx 8/2004, Stage IIb neo-adj ACT, Taxol, lumpectomy 36 rads 2nd dx 3/07, Stage IV abdominal lymph nodes carbo/abrax, avastin, taxotere x4 Tykerb, Xeloda To begin 1x weekly Abraxane/Navelbine 8-15-08
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EWKSeattle
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Joined: Oct 25 2007
Location: United States
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Points: 218
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Posted: Jul 29 2008 at 9:25am |
I was NED the whole time I was on Xeloda and Avastin last year. That was about 4 months, following 4 months of NED while on Navelbine and Avastin. When we cut the Avastin (due to side effects), leaving me on Xeloda alone, I recurred within 4 weeks. So my conclusion was that Xeloda alone was ineffective for me. Sorry to give such a negative answer.
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Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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Danelle
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Joined: Aug 01 2008
Location: United States
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Posted: Aug 01 2008 at 5:36pm |
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Hi all - This is my first visit to the website and didn't realize there was a recurrence formum - so I have posted here also.
I came home today from my first Carboplatin/Avastin IV for my recurrent Triple Negative BC (originally diagnosed in 9/06 with 5cm Grade 3 and treated with Adriamycin, Cytoxan and Paclitaxel, Mastectomy and Radiation). They are also treating me with Xeloda (by mouth) two weeks on and one week off for 12 weeks. It came back this month in the skin (visibly) above the original breast cancer. I have had 5 MRI's and one PET scan that showed nothing (only inflamed areas). This skin biopsy and the cancer marker were the only indications that "THE BITCH WAS BACK". If anyone is aware of new clinical trials - please respond. I will check with MD Anderson on a post I saw on this website. Good luck to all on the forum - I will be praying for all of us.
Danelle
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Nancy
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Joined: Jul 23 2007
Location: Altoona, PA
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Posted: Aug 01 2008 at 6:11pm |
hi Danelle,
Welcome to the site 
It doesn't matter where you post, as long as you post! So sorry to hear that you have mets. Cannot believe that 5 MRI's and one PET scan showed nothing. I have to ask....are they sure they showed nothing? Is it possible that someone read them wrong? It does happen. More than we would like to think, and to many people.
There are quite a few women on the site who are in clinical trials and I know that they will respond. GalGal is one, and sunbearz is another. You can private message them if you want to.
Have you had the BRCA testing? Too many questions for you, I'm sorry. The women on this site are absolutely wonderful, and are at all stages of either a first or many journeys with this beast.
My daughter Lori was dx June 13, 2007. She had a 5cm tumor also, mastectomy, and was treated with the same chemo as you (Taxotere),and 28 rads.
Many hugs, 
Nancy
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trip2
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Joined: Jun 03 2007
Location: Under Palm Tree
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Points: 8549
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Posted: Aug 02 2008 at 4:12am |
Hello Danelle, my gosh what an experience you have had, I'm so sorry the c came back and I know it happens but feel it is unbelievable about those tests not picking it up! It is scary to think sometimes these things don't work, what in the world are we to rely on?
It sounds like you are in good care and a doc that still followed up.
You might look at the link above called Resources and there should be a list of clinical trials.
Also you can go to
Best wishes and hope you can find a trial for you,
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Stage 2 2003
Stage 1 2007
BRCA 1+
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Danelle
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Posted: Aug 02 2008 at 8:12am |
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Nancy,
In response to some of your questions, I am BRCA negative. The first indication that something was up this time around, was shoulder pain and pain in the arm on the effected side. I scheduled another round of physical therapy thinking I was just getting a frozen shoulder. Before I started PT, I noticed a quarter-sized redness appearing at around my clavical. I went back to my radiation oncologist to see if this was a delayed reaction to my radiation. That's when the testing started and continued for about two to three weeks and finally ended in the skin biopsy. The MRI's showed swelling in the pectoral muscle and swelling across the upper side of my chest. My radiation oncologist warned me that she thought this was the cancer coming back, even though the tests were negative (no tumor mass seen). By the time the biopsy came back, the redness had spread to my reconstruction incision in a triangle from the clavicle (about a 4 inch triangle and all within the area that was radiated 14 months ago). We got the port in place and started the new chemo within three days - very aggressive. Surgery was no option because there is no specific mass - just alot of angry skin to show. I understand that this is a very unusual type of reocurrence even for us Triple Negatives.
Thank you all for the information - keep it coming. I will try to add information that I feel may be helpful to all of you.
Danelle in Phoenix
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wishing4miracle
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Posted: Aug 08 2008 at 6:17am |
Hi all,
I am 39 and was dx with stage 4 triple neg bc in 4/08. I am BRCA+. It has mat to my bones. I just finished 13 cycles of weekly Taxol and biweekly Avastin to find out the the cancer has spread. They stopped the Taxol and I start Xeloda (1500 mg 2x/day) on Monday along with the biweekly Avastin.
I would love to hear from any of you that have had similar experiences - and any thing you know about Xeloda (side effects and if it worked for you.)
I could use any words of encouragement as I am deeply sad and disappointed with yesterday's news.
Angela
(Orlando, FL being treated at MD Anderson, Orlando)
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Danelle
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Posted: Aug 08 2008 at 7:24am |
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Angela,
I have been on Xeloda, Carboplatin and Avastin for just over one week. Not too sure what to tell you other than one of them is nauseating me. I didn't really have any problems with nausea during the first round of chemo in 2006. It is stabilizing and I am figuring out which anti-nausea works best and when to take it.
I know how discouraged you are about the treatment, but as I have been told, the doctors have a great many tricks up their sleeve and one combiniation of drugs will surely work for you. As hard as it is - stay positive and pray for God's guidance on your doctor!
I will be hoping and praying for all of us - God needs to kick this cancer thing in the ass!!!!
Danelle
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EWKSeattle
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Joined: Oct 25 2007
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Posted: Aug 08 2008 at 9:27am |
Hi Angela,
I did Xeloda + bi-weekly Avastin last year and found it very easy to tolerate. In fact, it was by far the easiest regimen I've had.
The Avastin gave me minor nosebleeds, and I bruised a little easier than usual.
From the Xeloda, I had hand/foot syndrome where the palms of my hands and soles of my feet got sort of dry and cracked. But that was really all. Xeloda gives some people diarrhea, but I never had that problem.
Toward the very end, the neuropathy in my toes (which I'd had for a year at that point, due to Abraxane) got worse and I had some muscular pain around my irradiated areas. The onc thought it was the Avastin, so she stopped the Avastin. (Honestly, I wish I hadn't even mentioned it to her, since it wasn't really all that bad.)
Good luck. I hope it goes easy and does the trick!
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Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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thinkpositive
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Joined: Jun 24 2007
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Posted: Sep 26 2008 at 2:21pm |
Wondered if you had good results with the Avastin Xeloda combination. I have been on Avastin and Abraxene but my most recent PET scan showed progression of Lung Mets. How often did you take the Xeloda ? Did you lose your hair ?
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dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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trip2
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Location: Under Palm Tree
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Posted: Sep 27 2008 at 5:29am |
Hi thinkpositive,
I'm so sorry to see you have progression in your lungs. Are you planning on using Xeloda next?
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Stage 2 2003
Stage 1 2007
BRCA 1+
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thinkpositive
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Location: United States
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Posted: Sep 28 2008 at 6:01am |
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I will see my oncologist on Tuesday but he and I did discuss Xeloda & continuing Avastin as the next plan. He mentioned that there is a clinical trial he thinks might be good but you have to have been on Xeloda to qualify.. I will get more info on Tuesday. If anyone has any suggestions or questions I should ask please let me know. thanks
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dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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Emilie
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Joined: Sep 06 2008
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Posted: Oct 01 2008 at 4:42pm |
Hi, Thinkpositive,
I am in the same boat as you. I have been receiving the Avastin/Abraxane combo since May 08 and just found out that the cancer has stopped responding. The cancer in my bones is spreading. My oncologist is thinking of switching me to a Xeloda/Ixempra combo but wants to finish this cycle first.
I wonder how much success others have had with the Avastin/Abraxane combo. It's supposed to be the best chemo regimen for Stage IVs.  Finding out it stopped working is incredibly disheartening.
Hugs,
Emilie
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11/05 Age34-StIIIC-multiple nodes,9.5cm primary
12/05 Neoadjuvant-AC/Taxotere
6/06 Bilat mastectomy
7/06 7+wks Rads
4/08 StIV-mediastinum,sternum,pelvis,lymph nodes
5/08 Abraxane/Avastin/Xometa
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Nancy
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Joined: Jul 23 2007
Location: Altoona, PA
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Points: 3814
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Posted: Oct 01 2008 at 5:02pm |
Hi Emile,
I see where this is your first post, and I wanted to welcome you to the site 
You must have been a 'lurker" for a while, just like me 
Looks as though you are going through some pretty rough times right now. So sorry to hear that the regimen is not working. It is indeed disheartening.
Pam has posted some trials on the "TNBC News, Resouces and Tips" forum, and you might want to take a look at that. Where are you receiving treatments? I see that you were first dx in 05, so you have really been fighting this for a long time.
What tests did you have between your rads and then the new dx of mets? It is so disheartening as you said, and you were so young when you were first dx, and are still so young.
I know that thegals who also have mets and possibly are on a different regimen will indeed respond to you. My daughter Lori was dx tnbc June, 2007.
Please post often Emile, and we will all be here for you every day. I hope that your onc continues to be vigilant with your tx, and possibly will find one that will work.
Don't lurk anymore sweetie...there is much love...from many gals here for you 
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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lilat
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Posted: Oct 01 2008 at 7:57pm |
Hello, I am just into my last cycle of a clinical trial which I've not seen mentioned by anyone else on this site. I am on a regimen of Carpoplatin, Gemcitibine, and a study drug called BSI-201. I've had 21 of 23 treatments in all, getting the study drug twice a week and the Gem/Carb combo once a week, two weeks on, one week off. I will be finished on October 10  . My oncologist has been very positive and hopeful that this drug will prove to be effective for TNBC. Since beginning the treatment in June, I've had two CT scans that show shrinkage in the tumor under my arm. I'll have to wait for my October 15 PET scan to know about the tumor behind the sternum, but if one tumor is shrinking then I can expect the other to be as well. There has been no change in the lung mets. I did not lose my hair this time, and the side effects have been different, but not as severe as the AC/Tax I received last year. Low blood counts are the most prominant side effect for me, causing me to have to skip a couple of Gem/Carb treatments. The study drug seems to be pretty tolerable, and if it works on the tumors too, that will be great news. The study I'm on is a phase 1 study, so there are not many participating. I'm sure the more who can qualify the better. I hope for the best for you ladies facing new plans of attack and I pray for guidance in the very important decisions that you must make. Many blessing to you, Lila
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Feb 07 Dx Stage 2B IDC TN lumpectomy,AC/Tax, 33 Rads
May 08 Dx mets to axillary, inner mamm nodes, lungs, BRCA neg
June 08 BSI-201/Gemzar/Carbo
Dec 08 Dx mets to bones
Jan 09 Sutent/Xeloda
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thinkpositive
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Posted: Oct 02 2008 at 3:46am |
Emilie,
Sorry to hear the AA combination has stopped working for you as well. I get the impression that these drugs are like antibiotics that just lose effectiveness after a while and we need to move on to something new. It did knock out 3 of my lung mets so I have to believe it was not a waste but you and I obviously have some stubborn cells left.
My onc did not mention Ixempra but I will ask him about it next visit. He mentioned that if the Xeloda - Avastin combo doesn't work there is a clinical trial to consider but you have to have had Xeloda to qualify.
Please stay in touch, I will be anxious to hear about your success on the new drugs. We will beat this when those nasty cells figure out we are not going to quit fighting.
Hugs to you too, Chris
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dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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thinkpositive
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Posted: Oct 02 2008 at 3:54am |
Lilat,
Glad to hear that the clinical trial is working and that there are women like you open to trying new drugs for the good of others. I am curious as to what your oncologist plans for you after the trial since you mention an end date. It sounds like your lung mets are stable I hope you see a positive change in those on the next scan. It is strange how the chemo works on some tumors and not others.
We will all be hoping for positive results from your trial. Thanks for sharing.
Chris
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dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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lilat
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Posted: Oct 02 2008 at 4:36am |
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Chris,
I too, am curious as to the next plan my oncologist has for me. I asked him a few weeks ago what we may do next and he said it was too soon for me to ask. He assured me though, that there are many treatment options left and new trials just getting ready to be released. I will be followed for more than a year on the trial I'm presently on. I know this won't be the end of chemo for me since the tumor under my arm has only shrunk to a point and then stopped. I was hoping it would be undetectable by now.
I am very thankful that I seem to recuperate well from treatments. I am open to another clinical trial, if I am a candidate. I receive my treatments in Vancouver, WA at NW Cancer Specialists. They are into the cutting edge research and knowledgeable of TN.
Eventually, these tumors will be hit with something they can't figure out!
Lila
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Feb 07 Dx Stage 2B IDC TN lumpectomy,AC/Tax, 33 Rads
May 08 Dx mets to axillary, inner mamm nodes, lungs, BRCA neg
June 08 BSI-201/Gemzar/Carbo
Dec 08 Dx mets to bones
Jan 09 Sutent/Xeloda
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thinkpositive
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Posted: Oct 02 2008 at 4:58am |
I agree. My oncologist is the research specialist for the group I use and seems to be on top of the clinical trials as well. I am in Atlanta.
Please let me know how your next scan goes and the treatment plan. I'll do the same.
Have a great October. Chris
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dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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