Capecetabine (Xeloda) vs Carboplatin (displaying) |
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Rocky 
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 Topic: Capecetabine (Xeloda) vs Carboplatin (displaying)Posted: Oct 19 2016 at 9:19pm |
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Just finished Double Mascectomy, had a 2 cm tumor and 5 nodes involved. Only did AC and 1 dose of Taxol before surgery, ( response was poor). One doc suggesting weekly taxol followed by radiation and Xeloda. Other doc is for adding Carboplatin to the taxol. I have not metasticized yet( I hope) and worry if AC did not work , taxol won't be better and I am waiting 12 weeks before adding something more. On the other hand, I suffered from peripheral neuropathy so if I add Carboplatin now, there is a risk I can't tolerate the dose and miss out on taxol and Carboplatin. To make it all the worse, I don't know which is better, Carbaplatin or Xeloda!! Anyone tRavel down this frustrating path?? I'm also BRC negative which makes it more confusing
Thanks in advance for everyone's insights which are always great. |
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Tulips
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Joined: May 04 2015 Location: RI Status: Offline Points: 389 |
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Posted: Oct 20 2016 at 6:14am |
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Hi Rocky,
I'm sorry you are facing these difficult decisions! And I hope it helps you to know I had a fairly similar story. In April 2015, I was diagnosed with a 2.2 cm TNBC tumor, no nodes. I decided to join a clinical trial, which added Carboplatin and a parp inhibitor (Veliparib) to neoadjuvant AC-T. I definitely got the carboplatin (we could easily tell by the pattern of my blood counts), and I may have gotten Veliparib or a placebo. I definitely had 4 AC and 12 Taxol. The Carboplatin was added to the Taxol, but only every 3 weeks (so I had 4 doses of Carbo). I liked thinking I was getting the "varsity team" of chemo....lots of stuff to fight it! I am also BRCA negative. I tolerated all of that chemo very well. The one problem I really had was with blood counts. Mostly after the Carbo weeks, my WBC and then my platelets were too low--I had to postpone treatment 4 times by a week (so it took 16 weeks to do the 12 weeks of Taxol). We did end up adding neupogen shots to the Taxol phase (and then I had the platelet troubles, ha ha ha). I only had very manageable neuropathy (Although for several weeks I tried out acupuncture, and shared my concern about neuropathy. She did some special things to try to minimize neuropathy. Of course there is no way to know if it worked, but I kind of think it did help, FYI). At the end of all of that neoadjuvant chemo, I had a lumpectomy, and was crushed to have residual...I was so sure I'd get a pCR ;-). I had .8 cm tumor left. There is no way to know if the carbo helped or hurt me. I seriously wonder if it hurt (since it clearly caused my 4 weeks of delays....might I have been better off skipping the carbo and getting my 12 weeks of taxol done in 12 weeks?). I think if I was BRCA positive, I wouldn't be doubting its effectiveness for me so much. But clearly this can only be speculation....perhaps the carbo helped reduce my tumor, and it the residual would have been bigger without it. No way to know. One good thing: it did not contribute to neuropathy. I didn't think neuropathy was a major side effect of carboplatin; I thought it was mostly a side effect of the taxanes. Sorry, I know this is getting long & boring! Anyway, after I found out about the residual, I really wanted more treatment (in addition to the radiation we had always planned on me having). But back then (late November 2015), there was no proof of any adjuvant chemos helping in these cases, so my MO was very reluctant (maybe unwilling) to prescribe any more. Then, the results of the CREATE-X Xeloda trial came out in early December! Kismet! They showed a 42% reduction in risk for TNBC patients who had residual and followed up with adjuvant Xeloda. Now I always had no lymph nodes involved, and the risk reduction for people like that was likely lower than 42%, but I still liked the idea of having another thing to throw at this. So I did my radiation, and then 6 months of Xeloda, and finished up at the end of August 2016. I luckily tolerated the Xeloda very well--it didn't even feel so much like I was on chemo, since it's a pill and my hair grew back. (Nonetheless, I'm thrilled to be done). I will say that Xeloda seems to be relatively easy for most, but we do have a special person on this forum who tried it and had a horrible, horrible reaction to it, so we do have to remember that all of this stuff is toxic and not without risks. I believe that's rare, but it does happen. I will have no way of knowing if the Xeloda pitched in and knocked out some cancer or not, since this was obviously adjuvant. But I will say that getting another weapon has helped my mindset tremendously. I feel like I battled it some more, and it makes me much less worried for now. I have no regrets about adding in the Xeloda at this point. By the way, there seem to be many people for whom AC doesn't work and then Taxol does, or Taxol doesn't work and AC does. I'm a little curious why they stopped your neoadjuvant after just one Taxol....were they already confident that the Taxol wasn't going to work? It sounds so early to assess. I wouldn't think you'd rule out a chemo working after just one treatment, so I'm wondering if your side effects/neuropathy played a role in stopping? Since they're willing to resume the Taxol, it doesn't sound like they've ruled out the possibility of it helping you. Anyway, I guess I'm wondering why you have to choose between Carboplatin and Xeloda. If they're willing to finish the rest of your 11 Taxols (to which you could add carbo), if you wanted, couldn't you follow that with Xeloda, too? Good luck, Rocky! The decision-making part I think is the worst, and once you have a plan again, you'll feel so much better. Thinking of you! Tulips Edited by Tulips - Oct 20 2016 at 2:09pm |
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Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Sunny day
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Joined: Oct 20 2016 Location: Pennsylvania Status: Offline Points: 7 |
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Posted: Oct 20 2016 at 9:14am |
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I just finished a lumpectomy and several nodes removed. 2.1 cm tumor with 4 nodes involved. I had (4)AC AND (12) Taxol with (4) Carboplatin. Had residual of 1.7cm. Plan to do radiation and thought all chemo was done, but was just told about Xeloda and I am very confused. I'm ready for radiation but not sure I want to do more chemo, feeling ready to feel and have life go back to as normal as possible. I did tolerate chemo fairly well, I had to take a break once with AC and once with Carboplatin (which they had to lower the dosage due to blood counts). Anyone who could share their experience with decision making and or experience with Xeloda would be greatly appreciated.
Thanks, Sunny day Edited by Sunny day - Oct 20 2016 at 9:14am |
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Warrior31
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Posted: Oct 20 2016 at 2:03pm |
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Hi Rocky,
I'm sorry you have so many things to think about! I guess my questions are similar to Tulips': (1) couldn't you try Taxol+Carbo and then stop Carbo if ever the neuropathy gets too bad, and (2) then go on to taking Xeloda? I agrre with Tulips that sometimes Taxol and AC work differently on different people and they also attack cancer cells through different mechanisms, hence the idea of getting both drugs if possible. Concerning Xeloda, I've had a very similar course of treatment as Tulips and felw right through with Xeloda (save for the fact that part of it overlapped with my radiation treatment and I ended up with a sever burn). I also think that both Xeloda and Carboplatin are good, none is better than the other, or at least it's difficult to say a priori. I know I did not get Carbo because I'm BRCA negative and my MO was afraid it would cause more bone marrow toxicity than it would benefit me, so I guess you can discuss this with your MO. If you want more info on Xeloda, there is a thread on this forum where we've discussed it (myself, Tulips, and Jacklin I believed all received adjuvant prophylactic Xeloda). You can search for my pseudo and my posts using the Search option at the top of the page). Good luck! |
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Dx at 31 yrs-old 06/03/15; left IDC 1.6 cm; Chemo 28/04/15: 12 weekly Taxol then 4 AC; Lx with SNB 24/11/15; no PCR: 3 mm residual; 20 Rads 20/01-17/02/16. 8 cycles of Capecitabine started 04/01/16.
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Warrior31
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Posted: Oct 20 2016 at 2:14pm |
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Hi Sunny Day,
I completely understand your perspective. I received a similar course of treatment as yours (minus the carbo) and was in a similar situation to yours last december. Post-chemo and lumpectomy, I had a 3 mm residual. As Tulips mentioned, the preliminary results from the CREATE-X study had just come out so my multi-disciplinary team suggested I should start Xeloda as soon as possible. I decided to go for it since I was already in treatment and thought I might as well put all chances on my side. So I started Xeloda Jan 5th and took my final dose on July 7th. It went quite well, I had very minor side effects and none were unmangeable. Mild nausea a couple times, sore hands and feet (controlled with urea-containing cream), a bit of constipation, and some fatigue. The fatigue could well have been caused by the rest of my treatment and especially by radiotherapy which I did in Jan-Feb 2016. Concerning radiotherapy (as I read that you still have to do it), I had a severe burn because I took Xeloda at the same time as I did radiotherapy - they acted in concert and Xeloda made the radiotherapy all the more potent. That was the worst side effect of either Xeloda or radio and it was unsupected. My doctors had not foreseen it at all! So I had to deal with the burn and then lowered my xeloda dose a little jsut to make it more appropriate for me. I am mentioning this so that if you decide to take Xeloda (I would personally recommend that you try and see if you handle it well) and that your doctors want you to do radiotherapt at the same time, you might want to mention my story to them just to prevent it from happening to you! Please see my post above for more info on how to read my, Tulips and Jacklin's posts concerning xeloda... Don't hesitate if you have more questions... Warrior31 |
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Dx at 31 yrs-old 06/03/15; left IDC 1.6 cm; Chemo 28/04/15: 12 weekly Taxol then 4 AC; Lx with SNB 24/11/15; no PCR: 3 mm residual; 20 Rads 20/01-17/02/16. 8 cycles of Capecitabine started 04/01/16.
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Rocky
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Posted: Oct 20 2016 at 10:40pm |
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Thanks so much for your perspective Tulip. I went to surgery because ultrasound done after AC showed tumor grew and spread to another lymph node. Did the one dose of Taxol to keep it in check while waiting for surgery. Maybe both is a good idea , will discuss with my onc. Your willingnesss to share and help really warms my heart.
Edited by Rocky - Oct 20 2016 at 10:42pm |
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Rocky
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Posted: Oct 20 2016 at 10:45pm |
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My oncologist is suggesting Xeloda and radiation together and then maybe Xeloda for another 6 months. Adding it at least during radiation is supposed to provide some benefit. Good luck with the decisions, it is difficult.
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Rocky
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Posted: Oct 20 2016 at 11:20pm |
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Hi Warrior 31, I found the other thread on Xeloda, great info. I expect I will be giving it a try. Will keep everyone posted. Thanks
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Sunny day
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Posted: Oct 21 2016 at 11:08am |
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Hi Warrior31,
First I want to thank everyone for posting on here, it's so helpful to know other people are going through the same thing, and to hear about their experiences. I also think it's great that there is so much information shared ! My doctors would like me to do the radiation first and then take the Xeloda after I'm done with radiation, so I don't think I would have the severe burn like you did unfortunately that you had to go through that. I think I will be taking the Xeloda, it has helped a lot with my decision to read the different posts on here, and I found the CREATE-X study and read that also. I am very excited to return back to work on Monday, October 24. I am a person that loves to be around other people and I get the chance to make them feel happy, confident and good about themselves. I own a small salon and I work behind the chair around 40 to 50 hours a week. Keep smiling!!! |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Oct 24 2016 at 2:24pm |
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Rocky,
Treatment decisions are always confusing, not knowing how you will respond. Can you ask your onc if there are any studies supporting one treatment choice over the other? Do you have time and ability to possibly get a second opinion quickly? Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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Rocky
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Posted: Oct 25 2016 at 10:50pm |
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Thanks for the ideas. I am going to start on Taxol and get a third opinion, see how I feel and then consider adding Carboplatin. Xeloda is a given down the
Road. |
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Daran
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Posted: Oct 30 2016 at 2:48pm |
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Hi Rocky,
I so sympathise with your issues of trying to feel confidence in your treatment options. My advice is take your time and seek as many other opinions as you can. The longtierm impacts of taxanes are pretty hectic. I am BRCA 1 and TNBC, and had a double mastectomy followed by 4 docetaxol treatments in 2012 and now my cancer is back and metastatised which makes me very mad as the treatment I ahd was really hectic. Now I am on Xeloda and cannabis oils and doing very well. My oncologist has suggested I try carboplatin if this doesn't work with another drug I can't remember, but please just do some online research on effect of taxanes. It was very depressing to me to see how many people had to go on Xeloda due to metastatic disease after taking docetxaol. There has just got to be another way besides chemotherapy!!!
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Rocky
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Posted: Oct 30 2016 at 4:21pm |
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Thanks, I am sorry to hear that your cancer is back, though It's encouraging to hear you are doing well. I agree wholeheartedly we neeed more options. There is a lot of activity in the clinical trials, hopefully some of those options will pan out soon. Are you using prescription cannabis oils or the over the counter stuff? Best of Luck and hang in there!
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Daran
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Posted: Oct 31 2016 at 12:55am |
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Yes thats also what my oncologist has told me, that Xeloda is my best option for now but there are lots of new drugs getting close to being available. PARP inhibitors for example. I live in South Africa so I get my CO from a local supplier. Definitely helps with pain control.
Best wishes for your good health!!
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Sunny day
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Posted: Nov 02 2016 at 10:04am |
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Hello everyone,
I'm new to this and I've never heard of the cannabis oils. Can you tell me what it is and what it does? Glad to hear everyone is doing well! Thanks, Sunny Day |
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ChicagoSuburbs
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Posted: Nov 11 2016 at 2:06pm |
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Hi
Everyone! I am
new to the forum. My wife was, 39 yrs old at the time, diagnosed with stage III
triple negative locally advanced breast cancer in April 2016. Community hospital
oncologist put her on standard 12 weeks AC+T, followed up by mastectomy, after
which there was residual tumor left in the breast of 1.1 cm with 9 out of 12
positive lymph nodes cancer positive. As we speak she is starting Radiation.
Oncologist at the Chicago suburbs community hospital suggested 6 months of
Xeloda( Capecetabine ) immediately simultaneously with Radiation, Radiation Oncologist
refused to do both simultaneously. My wife and I went to see Dr. Rita Nanda, at
University of Chicago, for a second opinion. Dr Nanda did not agree with the
Xeloda, instead she proposed Carboplatin + Gemcitabine. Also, Dr. Nanda is participating
in a clinical trial called, A Phase II Randomized Controlled Trial of
Genomically Directed Therapy after Preoperative Chemotherapy in Patients with
TNBC, and offered my wife to try it out, subject to approval from Indiana
University Tumor analysis, etc.. What should we do? 1)
Stay
with local hospital in the suburbs and start Xeloda after Radiation completes
by year end 2)
Move
my wife to Dr. Rita Nanda at University of Chicago and start Carboplatin +
Gemcitabine 3)
Move
my wife to Dr. Rita Nanda at University of Chicago and hopefully start the
clinical trial of Genomically Directed Therapy after Preoperative Chemotherapy 4)
Seek
third opinion? I noted other reputable cancer centers prescribe Xeloda as
standard of care the last few months now. i.e Tiffany Traina @ Sloan Kettering
in NY or MD Andersen? Also, so many other people take the Xeloda route, wonder
what to do. We really appreciate your advice with above? Thanks a lot! |
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tnbc1984
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Posted: Nov 11 2016 at 5:22pm |
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Hello,
I understand this is a difficult position to be in.
Is it possible for you to do chemo sensitivity testing? If it is available, that would give you more information about what drug might work best on your wife's cancer. If not available through the hospitals you mentioned, I know labs overseas like Maintrac (based in Germany) will test circulating tumor cells against various chemos. Unfortunately there is a cost involved but it might be worth looking into. You could test Xeloda vs. Carboplatin + Gemcitabine and use that information to make a decision. The clinical trial sounds promising but you run the risk of being assigned to the control group. All the best to your and your wife. |
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Dx June 2015 IDC TN 3.2 cm, Grade 2, BRCA negative
Chemo July 2015 (AC-T), BMX with SNB Nov 2015, Rad Jan 2016 http://icanbeatbreastcancer.blogspot.ca |
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gordon15
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Posted: Nov 11 2016 at 6:58pm |
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My wife is post-therapy .Radiation was done in May 2016- I would go with the Carbo-Gem. My wife had it, she has a metaplastic component in the residual tumor, there was some resistance to the Carbo-Gem of the metaplastic, but it killed all of the cancer that migrated to her lymph nodes. Xeloda is still not proven effective from all I read.
send me message if you feel like it, my wife is seeing the Tumor Board head at UCSD/Moores Cancer Center, she came to San Diego from MDAndersons, Razelle Kurzrock, MD, UC San Diego Health and Moores Cancer Center she did a bunch of genetic tests but I am skeptical if that's a good idea for your wife to wait for that because there is data out their that chemo delay can reduce impact, this was the case for my wife, they wanted to hit her with all the chemo, ASAP, but bear in mind, she had a metaplastic component which is more aggressive, but she was Stage 3A (it was 3C until the pathology said the cancer was dead in (4) lymph nodes, her surgeon removed (5)) Edited by gordon15 - Nov 11 2016 at 7:06pm |
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wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16 PET scan stable 9-2016/ 1-2017 |
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Rocky
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Posted: Nov 11 2016 at 7:47pm |
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Hi Chicago, It is so difficult to work through all these options. I think the chemo sensitivity testing makes great sense but have not been able to find anyone doing it. I have inquired at Mass General they don't do it for this type of cancer, I am going to Dana Färber next week and will ask there too. In my case I know that I was resistant to chemo (AC), since it was growing and invading the lymphs, both docs advised surgery before Taxol. At the moment we don't know if other chemo will work or not, but I am continuing with Taxol because, I'm told, about 20% of the time it works where AC failed. Do you know if the chemo you have done to date had an effect? Did the pathology report observe any cell " necrosis". In my case there was no evidence of cell death and I ended up with 5 lympnodes chocked full. When I started chemo I had a 1 cm tumor no nodes, after 5 rounds of chemo 2.5 cm and 5 nodes. I am anxious to add some different approaches (beyond chemo) : radiation which i will do with xeloda, also I was advised by the oncologists to look for clinical trials. Specifically immunotherapy. There is not a lot of them out there but I am going to try to dig it up. I think in the end I will end up with 4 opinions. The upside of so many folks is you get many opinions and the most exposure to clinical trials (. Note many of them are filled by docs before they ever get listed on the websites). The downside of many opinions is u have to sort through them and figure it out. In your case I would be worried if the local "team" is giving mixed messages. If the medical onc wants Xeloda with radiation and the radiation onc refuses, that puts you in a tough position and does not reflect well on the group. Did Dr. Nanda explain why she wanted carbo plus Gem. Vs. Xeloda? I have had success getting folllow up questions answered via. Email. Maybe her answer will help you to understand better her recommendation. I know that carbo has proven success for BRC positive folks, it is not as clear how it works for BRC negative. Would the carbo happen before of after the radiation? I am taking Taxol and getting a third opinion next week. I am lucky to be near enough to mass gen'l and Dana Färber which are top notch. If you get another opinion, it's worthwhile getting it from somewhere/ someone who you feel good about. Somewhere on this site I heard about a member with a list of docs who are good for tnbc. I will close this long answer and see if I can dig up the name. Hang in there and keep attacking Rocky |
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ChicagoSuburbs
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Posted: Nov 12 2016 at 5:24pm |
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Rocky – appreciate your note. Please do let me know if you
find out who does chemo sensitivity testing in a US
hospital, covered by insurance. To answer your questions: yes, my wife initially
had two tumors in the breast, 1.7 cm that went down to 1.1 cm and second of 1 cm
or so had no cancer left. Pathology report did mention necrosis in the nodes.
Yet, we are very concern as 9 were
positive in addition to the over 1cm tumor residual in the breast. Dr. Nanda claimed that the population of the
Asian trial, women from that part of the world have different genetics than US
women; thus, needed more data/evidence, not good enough for her. She wants
Carbo + Gen post Radiation. I could go to Northwestern for a third opinion,
but I am not sure if locally in Chicago there is anyone better than Dr. Nanda at
UC. Who would you recommend from NY Sloan or MD Anderson? Why did you decide to go with Xeloda during
Radiation? I don’t understand why some
many people on this forum go with Xeloda, and the UC triple negative expert is
not on board with it. Immunotherapy trials, I was under impression they
are for stage IV, metastatic stage. Have you come across any, if yes, please
let me know. Dr. Nanda participates in tons of trials but did not mention anything
for my wife for immunotherapy. |
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