Xeloda
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Topic: Xeloda
Posted By: diane1w
Subject: Xeloda
Date Posted: Jul 27 2008 at 12:06am
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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 ------------- 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. |
Replies:
Posted By: ljmiller
Date 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 |
Posted By: EWKSeattle
Date 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.  ------------- 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. |
Posted By: Danelle
Date 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 |
Posted By: Nancy
Date Posted: Aug 01 2008 at 6:11pm
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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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Posted By: trip2
Date Posted: Aug 02 2008 at 4:12am
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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
http://www.clinicaltrials.gov/ - http://www.clinicaltrials.gov/
Best wishes and hope you can find a trial for you, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Danelle
Date 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 |
Posted By: wishing4miracle
Date Posted: Aug 08 2008 at 6:17am
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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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Posted By: Danelle
Date 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 |
Posted By: EWKSeattle
Date Posted: Aug 08 2008 at 9:27am
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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!
------------- 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. |
Posted By: thinkpositive
Date Posted: Sep 26 2008 at 2:21pm
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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 ? ------------- 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 |
Posted By: trip2
Date Posted: Sep 27 2008 at 5:29am
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Hi thinkpositive,
I'm so sorry to see you have progression in your lungs. Are you planning on using Xeloda next?
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: thinkpositive
Date 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 ------------- 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 |
Posted By: Emilie
Date Posted: Oct 01 2008 at 4:42pm
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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 ------------- 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 |
Posted By: Nancy
Date Posted: Oct 01 2008 at 5:02pm
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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 ------------- 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 |
Posted By: lilat
Date Posted: Oct 01 2008 at 7:57pm
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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 ------------- 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 |
Posted By: thinkpositive
Date Posted: Oct 02 2008 at 3:46am
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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 ------------- 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 |
Posted By: thinkpositive
Date Posted: Oct 02 2008 at 3:54am
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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 ------------- 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 |
Posted By: lilat
Date 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 ------------- 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 |
Posted By: thinkpositive
Date Posted: Oct 02 2008 at 4:58am
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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 ------------- 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 |
Posted By: Emilie
Date Posted: Oct 08 2008 at 7:57am
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Hi, Nancy,
Thank you for your encouraging words. It is hard to grapple with the fact that this disease is getting the best of me. It really has been hard to stay optimistic although I am trying my best. I have two young kids who have no clue as to how sick their mom is. I am not ready to leave them or my husband.
I am trying to deal with anger and depression and I feel like I am losing the battle. I was a healthy 34 year old when I was first diagnosed. I exercised, did not eat red meats and took care of myself. I couldn't understand why I ended up with cancer.
Thanks so much once again.
Warmly,
Emilie ------------- 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 |
Posted By: Emilie
Date Posted: Oct 08 2008 at 8:01am
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Hi, Chris,
Thanks for the encouragement. It's wonderful to hear that other women are continuing to fight and win their battles against triple negative. My oncologist assures me that we are not out of options. I will see him next week to see where we go from here. I hope to live to see my kids (ages 7 and 13) graduate from high school at least.
Hugs,
Emilie
------------- 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 |
Posted By: lilat
Date Posted: Oct 08 2008 at 8:18pm
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Hi Emilie, It's hard to stay positive, I know, when the reality of what we all deal with hits home. We try to protect our loved ones from the hurt, all the while having to make such serious life and death decisions for ourselves. The burden is heavy, and I hear it in your posts that what is happening to you is really weighing you down. I hope that I can encourage you to stay in "fight mode." Anything can happen. Though the future looks bleak, so many times things don't turn out the way we envision. That's why I find it best to not look too far down the road. So much of how well we go through this has to do with our thoughts, attitudes, and faith. Because of this cancer, I constantly realize how short life can be. With or without cancer, none of us have a guarantee of how many months or years we will live. My hope is that I won't waste one minute of the time I may have left. I've learned from my own experience, being healthy all my life, and having no risk factors, that this cancer can be completely random in targeting its victims. My oncologist also tells me that there are many treatment options we can try. Be strengthened and encouraged, Emilie. You are not alone! You will be in my prayers (and I do pray all the time). Lila ------------- 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 |
Posted By: sueez
Date Posted: Oct 12 2008 at 12:28pm
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i am also in your boat living close going to moffit would love to hear from you
sueez
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Posted By: thinkpositive
Date Posted: Oct 12 2008 at 4:17pm
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Sueez,
I am so glad you have reached out to those of us in the same boat as you say. You are being treated at a great cancer center and I know they will work hard to find the right treatment. How can we help? Is there information on going through chemo that would be helpful? I have been on Avastin and Xeloda for almost 2 weeks. So far it is not difficult - I get tired and a little nausea but ok.
We will all keep you in our prayers. I am sorry your Mom is not here to help but I am sure she is looking over you as you go through this. Sounds like your husband is very supportive. Keep us posted on your progress.
Hugs.  ------------- 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 |
Posted By: sueez
Date Posted: Oct 13 2008 at 11:13am
| thank you all hope i can get through this like you moffit just wanted a call from my husband on tues meaning here i am in limbo i called a doctor and on tues he will see us a little scared he has never had tripple neg before but at least he'll see us |
Posted By: forsofi
Date Posted: Oct 18 2008 at 3:42pm
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Dear Diane,
My Dear Aunt Sofi (67 yrs) has been recently diagnosed with TNBC with mets to the liver, lung, lymph and bone. She had a mastectomy about 18 months ago but has never been on any chemo. Just two weeks ago she started taking Zeloda. Can you tell me were you taking the Zeloda alone like she is and how are things going? I pray things are going well for you. Kathy |
Posted By: forsofi
Date Posted: Oct 18 2008 at 3:57pm
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I also wanted to tell all of you how amazing and strong you all are. I have been reading many of the forums and I pray for you all. Since my Aunt's diagnosis I have been trying to learn all I can and get involved where I can. My 4yr old daughter and I entered the "Race for the Cure" locally and raised $1500.00. My daughter loves her Great Aunt and screams with excitement every time we see her. We are devastated by my Aunts diagnosis and shocked by how many of you dear ladies are affected by it also.
God Bless You All-----KEEP FIGHTING |
Posted By: trip2
Date Posted: Oct 19 2008 at 8:06am
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Hi forsofi and a warm welcome to you.
I am so very sorry to read of your Aunt's diagnosis but want you to know there are some good meds out there to help her. You must love her very much to do research on your own to learn about her particular disease.
Ask any questions that you might have and we'll do our best to help you.
The ladies in this forum are very supportive and will offer what they can to help.
Congratulations on gathering so much money for the Race, that is just great!
Keep us posted on how your Aunt is doing, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: forsofi
Date Posted: Oct 19 2008 at 8:24am
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Pam,
Thank you so much for your warm welcome. |
Posted By: guitargal
Date Posted: Nov 02 2008 at 12:22pm
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Danelle, I'm in Phoenix as well, and as struggling in similar ways to you. I was initially diagnosed about 1 year ago, with a Stage IIb IDCS. I did a lumpectomy and 8 rounds of A/C/T, which failed immediately at the 2 week off of chemo. My breast swelled severely, and I underwent an emergercy masectomy. I then did Xeloda and 40 rounds of radition, but unfortunately now it has mets'd to my lungs. I went out to MD Anderson, (amazing plaze) and they put me on Navelbeine. I'm about half way through but I don't think its working. It's getting harder and harder to breathe, and I can't get comfortable. I don't know if that helps you, but I find by visiting the site and talking to others it helps me mentally. Anyways, I haven't met anyone in Phoenix that is triple negative, so Hi There partner. Best of luck.. ------------- dx 2/08, Stage 2 IDC, grade 3, N+1, lumpectomy, 4 rounds AC/4 round Taxol, then massive return and masectomy 7/08 (2 wks post chemo). 42 years old, divorced, two small daughters |
Posted By: trip2
Date Posted: Nov 03 2008 at 5:12am
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Guitargal, can't they give you something, a nebulizer or something to help you breathe better?
I wish you success with the Navelbeine and if that isn't working they'll find something that will!
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: thinkpositive
Date Posted: Jan 03 2009 at 9:34am
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Lila - wondered how you are doing? Hope the last round of chemo was successful and that 2009 will be a better year. ------------- 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 |
Posted By: lilat
Date Posted: Jan 03 2009 at 3:29pm
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Hi, Thanks so much for asking about me. To bring you up to date, the last round of chemo I had was a clinical trial of BSI-201 and carboplatin with Gemzar. It worked for a while, causing some shrinkage in the tumor under my arm and in the mammary nodes in the chest. The lung nodules remained unchanged the whole 4 months I was on it. I took 3 weeks off treatment to take a wonderful trip to Greece, Turkey, and Italy in November. When I got back, I had to decide to continue or stop the study. Of course, I chose to continue since the cancer was still there and the treatment did help. I finished one cycle and was getting ready to start the second cycle, but I had severe pain in my shoulder, which turned out to be mets in the second rib and the sternum. The treatment came to a halt, since it appeared there was a fracture in the rib. It turned out later that there was no fracture. After a bone scan and CT scan, it looks like the nodules in the lungs are growing and there are now more of them. I have a PET scan on Monday and then I will likely start on a new clinical trial of Sutent or Xeloda, depending on which arm I wind up in. I'd love to hear from those who have been on either of these drugs or the same study. I am still working and trying to stay very positive. I don't know if I should stop working and start spending more time with my family, especially my grandchildren. I guess I'll know when the time is right to make a change. Even though this progression is a set back, I still feel very hopeful and I am not looking to far into the future. Just appreciating every day and staying close to the Lord. Once again, thanks for checking on me. ------------- 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 |
Posted By: thinkpositive
Date Posted: Jan 03 2009 at 3:59pm
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So glad to hear you got some wonderful time away. We can't sit at home and wait to see what is going to happen. I am in a similar situation. The lung mets seem to be resisting the chemo. I did a couple of rounds of Avastin & Abraxene and saw some improvement and then reversal. I am on my 5th round of Avastin and Xeloda which seems to be holding me steady at best. The latest PET scan shows no reduction in size of the lung mets but some reduction in SUV. In the meantime, we took a cruise and I enjoyed my family over the holidays. I am also working full time at a rather stressful job in banking (not much fun these days). My onc wants me to try one more round of this combo and then another PET scan. He mentioned Navelbine and Gemzar or possibly a clinical trial if we don't see improvement. Guess we need to enjoy every day and hope that one of these drugs have some real impact. I hope you enjoy a healthier 2009. Hugs ! ------------- 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 |
Posted By: trip2
Date Posted: Jan 04 2009 at 7:26am
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Hello Lila, The trip sounds wonderful, what a lovely refreshing change of view.
I'm so sorry you've come back to find out you have a bit of a setback
but want you to know we are all behind you hoping the new meds will be the answer.
Best wishes, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jan 04 2009 at 7:30am
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Thinkpositive,
So you went on a cruise too, you two are lucky ladies, it sounds so relaxing, good for you.
I wanted to jump in and say good luck with the scan and new meds or a trial. There just has to be something and you'll find it.
Hugs, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: lilat
Date Posted: Jan 04 2009 at 12:33pm
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Thanks so much for the well wishes, Pam. The trip was a tremendous experience. I went with a group of 19 others, including two of my sisters and their husbands. We walked many miles, up and down more hills and stairs than I could have ever imagined. I am happy to say, that I was the only one in the group to escape some sort of sickness. The renewed strength and resilience was a special unexpected blessing and great preparation for this next round of this cancer battle. I am very grateful to have had the opportunity to go. It was worth every penny. I will keep you all updated regarding tomorrow's PET scan and future treatment. Here's to a healthier New Year for all of us and hope for finding a drug that really works against TNBC. Blessings, Lila ------------- 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 |
Posted By: woolie
Date Posted: Jan 04 2009 at 1:30pm
| Dear Danielle : I just went through so much of the same that you did and the skin biopsy was the only thing that showed cancer and it was not Triple Neg this time but Inflammatory breast cancer in the other breast and it all started with left arm pain. Since Dec 15 i was started on Xeloda, had a port put in and had a large dose of chemo New Years Eve. One of the chemos was also Avastin. They say after 3 to 4 months of chemo they are going to do a bone marrow transplant with my own harvested marrow.The Xeloda exacerbated my asthma so bad they have to stop it for now and I go back to the MD this week . I walk around puffing like an old smoker.I watched an episode of MASH and laughed so hard that I am going to try to buy the series. Try to watch funny TV and just laugh as loud as you can Good Luck JULES |
Posted By: trip2
Date Posted: Jan 06 2009 at 6:24am
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What a great idea! MASH is funny and if you enjoy it get the series, what a great bad mood breaker, good for you.
When you think about it there are several funny shows that people have enjoyed over the years and we now can go buy them and watch at our convenience.
I hope you are starting to feel a little better by now. I want to wish you all the luck and prayers that the new meds and upcoming procedure work perfectly for you.
Hope you will keep us updated?
Thanks for sharing ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: woolie
Date Posted: Jan 06 2009 at 8:59am
| Dear Pam : Thanks for the prayers and Good Luck to everyone, today is the first day in a week that I am feeling half normal . My first round of chemo last year was easier , I guess my body is getting a little annoyed. jules |