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Topic: Xeloda and TNBC

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: May 18, 2016 09:08PM

knitnpurl wrote:

There's been a lot of news about the Japanese study where they administered Xeloda to TNBC patients after standard treatment, i.e., neoadjuvant chemo, surgery, radiation, who were NED but not PCR at surgery. MY MO is advising that I start this treatment this summer.

I haven't seen much about going on Xeloda or dealing with the side effects except in the stage IV group. I found the chemo and radiation groups were very helpful getting me through those treatments. Since there seems to be a few of us out there whose doctors are starting this regiment, I thought I would start a place for us to share and help each other, while respecting the stage IV group's space. I'm searching for information myself.

Dx 6/2015, IDC, Left, 3cm, Stage IIB, Grade 3, 2/22 nodes, ER-/PR-, HER2- Chemotherapy 8/17/2015 AC + T (Taxol) Surgery 2/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 4/3/2016 Whole-breast: Lymph nodes, Chest wall Chemotherapy 7/26/2016 Xeloda (capecitabine)
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May 19, 2016 09:48PM TulipsAndDaffodils wrote:

Perfect! Thanks for starting this. I am on my fourth round of Xeloda/capecitabine out of eight total rounds. I was stage two and then I did not get a pCR. I was Residual Cancer Burden 2. I really pushed my oncologist to give this to me based on that study, and I am so relieved that he agreed. It does make me feel safer to be doing some more at this point.

I had zero side effects in round one and two. Towards the end of round three I got a little hand foot syndrome, nothing terrible. It actually made me happy to get it, because there have been some studies that show that for people who get hand foot syndrome that Xeloda is more effective for them. Who knows, but at least it made the mild pain feel worthwhile. I am on the seventh day of my new cycle, so no hand foot syndrome yet. I expect I might get it in a few days.

My dosage is 2250 mg per meter squared, which for me is 3750 mgper day (half in morning half at night). 14 days in, 7 off.

I would love to hear from other people on this regimen. Including side effects, dosage, anything else about your experience.

Good luck, ladies!

Tulips

Dx 4/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Surgery Lumpectomy: Right Chemotherapy Xeloda (capecitabine)
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May 20, 2016 06:24AM Angtee15 wrote:

So....I had my BMX last week and just found out the preliminary pathology report says I didn't get a pCR. About 25% of my tumor remained. @#$&! I am so disappointed.

Anyway my guess is Xeloda will come up when I talk to the MO in early June to go over the final report. A couple of questions: Any idea how many TNBC gals actually get the pCR? I saw as low as 38% but that doesn't seem right. Also does Xeloda cause hair loss?

Thanks!

Dx 11/9/2015, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Chemotherapy 12/5/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/11/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 20, 2016 12:40PM TulipsAndDaffodils wrote:

Hi Angtee,


I'm sorry you didn't get the pCR you were looking for. I almost forget my great disappointment upon finding out last November that I had residual. And I had an MRI between Taxol and AC which implied the cancer was all gone, so going into surgery, I had a "clinical complete response" and everyone was fully expecting pCR, so it was an extra shock.

Yes, almost all studies show approximately 1/3 of TNBC women get a pCR (there have been a few more specialized studies, especially of subpopulations like women who are BRCA positive and add carboplatin to their treatment, where the numbers can reach around 60%ish, but overall 30-35% is about right. So then why does it always seem that people are posting about their pCRs? ;-) It feels a little lonely to be in the residual cancer group, but it shouldn't....Of course, women who have surgery before chemo don't know if they would have been pCR or non-pCR, so that's totally separate.

Hair loss is rare on Xeloda (I think less than 10%). I haven't had any. I am on Round 4 of 8. They do say that "thinning" can occur. That sounded so vague to me, like it could range from something that just I would notice, to something that would require a wig. So I kept using my wig until last week--I wanted to get far enough into X so that I could start to trust that my hair won't fall out. I didn't want to ditch the wig and then need to go back to it. Happy to say, I'm finally wig-free! Although I hate my new hair. I've always had long hair, so I feel really uncomfortable and unattractive with my new 2" curly mess. It seems very matronly. But it's HAIR. Yay. I can't tell if X is slowing down growth or not. It will be a long process to grow out. Although people are the best (little liars that they are)--I am just swimming in compliments, and I think that they really mean it! Not that I think my hair looks good, but I think they are so clouded/blinded by affection, that they really think my hair looks great. You can really sense the sincerity. It cracks me up. I am trying hard to learn to accept the compliments graciously, but it's hard not to quip that I resemble Kramer from Seinfeld!

I hope your appointment goes well.

Tulips

Dx 4/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Surgery Lumpectomy: Right Chemotherapy Xeloda (capecitabine)
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May 20, 2016 05:17PM Valstim52 wrote:

Is Xeloda oral or infusion? Daily or weekly? If oral? If infusion how often?

I'm tn ibc, and probably will have some residual, though my MO has said no more chemo, rads after surgery.

The glass is half full. Do not live life looking in the rear view mirror. Can't go forward that way Dx 11/24/2015, IDC/IBC, Left, 6cm+, Stage IIIB, Grade 1, 2/19 nodes, ER-/PR-, HER2- Chemotherapy 1/10/2016 AC + T (Taxol) Surgery 5/23/2016 Mastectomy: Left, Right Radiation Therapy 6/21/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Mastectomy: Left, Right
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May 20, 2016 09:53PM Angtee15 wrote:

Valstim I think it's a pill...

Tulips thanks so much for the information! I had a mammogram and ultrasound after Taxol and before AC and had shown great response. I thought for sure AC was going to wipe the rest out but apparently it did next to nothing.

Oh well stressing about it certainly isn't going to help. I will hit the snooze on this until it's time to talk to the MO and all the information is final.

Dx 11/9/2015, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Chemotherapy 12/5/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/11/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 31, 2016 04:10AM knitnpurl wrote:

Great info here already! My follow up isn't until June 6, so I won't know for sure about Xeloda until then. If it's a yes, then I'll probably start at the end of the month. So happy that radiation is over. My skin is already healing up nicely.

Angtee 15 - I just have to comment, I had AC first, an ultrasound to see progress, and then Taxol. AC really knocked out the cancer and I was hoping that the Taxol would finish it off. However, at surgery it looks like it only kept it in check. Better than nothing at all. Just funny that we seem to have gotten to the same results but with the opposite drugs!

Take care ladies and keep us posted. I'll let you know what's up once I know from my doctor.

Dx 6/2015, IDC, Left, 3cm, Stage IIB, Grade 3, 2/22 nodes, ER-/PR-, HER2- Chemotherapy 8/17/2015 AC + T (Taxol) Surgery 2/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 4/3/2016 Whole-breast: Lymph nodes, Chest wall Chemotherapy 7/26/2016 Xeloda (capecitabine)
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Jun 6, 2016 10:47PM Angtee15 wrote:

The verdict is in for me: no Xeloda. Met with oncologist today and he said they want to see more than the Japanese study before prescribing it for residual TNBC. I didn't have any LVI, had clear margins over 1cm, and the Ki67 of the residual cancer was less than 10%. It was more than 50% at diagnosis.

I didn't push the issue because I don't feel compelled to do more chemo. For me I think I will be better served with some serious diet/exercise changes. Through my PCP, I am being assessed for metabolic syndrome and may be prescribed Metformin which could help ward off reoccurrence.

But I will process this for a few days and take my business somewhere else if I think I need to try Xeloda.

knitnpurl--how did your appointment go?

Dx 11/9/2015, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Chemotherapy 12/5/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/11/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 9, 2016 02:50AM knitnpurl wrote:

It was a great appointment overall. He's (and I) are happy with how I'm healing up from the surgery, my range of motion, and my overall health other than the weight gain Sad, but that's nothing new for me.

We are going ahead with Xeloda. In fact, he had the slides from the study all printed out for me to review. We're both of the opinion with this that, while it'll be a bad (how bad? not sure) few months of chemo, it won't do anything worse to me and could possibly help me in the end, that is it could help, but won't hurt me. I should start the last week of June.

For those of you are on it, my doctor kept saying no sun because of increased sensitivity. But I've been on other medications that also warn about that, but I've been fine with sunscreen and cover ups. Would it be the same, or do I really need to stay out of the sun?

My issue is that I've got my kids (5 an 8 year-old boys) out for the summer and I'm taking them to the pool and beach. My little one is in swimming lessons and my older one is on the autism spectrum and I'm trying to work with his therapists to help him stop being afraid of getting his face wet so that he might actually learn to swim. He does best when you expose him to the same situations over and over until he's finally used to it. If I can't get out to the pool, that will hold him back another year. We were going to work on this last year, but that's when I was diagnosed and between doctors visits and general pissed off at this, we didn't get back to the pool.

Dx 6/2015, IDC, Left, 3cm, Stage IIB, Grade 3, 2/22 nodes, ER-/PR-, HER2- Chemotherapy 8/17/2015 AC + T (Taxol) Surgery 2/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 4/3/2016 Whole-breast: Lymph nodes, Chest wall Chemotherapy 7/26/2016 Xeloda (capecitabine)
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Jun 15, 2016 04:18AM TulipsAndDaffodils wrote:

Hi ladies!

Just checking in. I am about to finish my 5th round. I realized that my 6th round was going to have my 2nd week of Xeloda right during our big summer vacation. Since I've been getting mild-moderate hand foot syndrome, and I anticipate it could possibly increase with each round, I was pretty unhappy about that, so my MO switched my schedule for the 6th round by breaking it up, so I'm one week on, one week off, one week on again. Then I'll be back to 2 weeks on/1 week off after that for rounds 7 & 8. So my vacation will fall during an "off" week, so hopefully I can hike, run, and just generally be super active on vacation. HFS this round has been very tolerable for sure, but it does sting and I have one icky blister. So I've taken it very easy for a couple of days, catching up on paperwork, phone calls, reading, etc. Not a big deal at all.

Knitpurl, I have been outside without a problem. My MO also warned me to be careful of the sun, but I'm thinking with a hat, coverups, sunblock, etc, it will be absolutely fine. I'm sure you can get your son in the pool! I haven't been careful the way my MO wants me to be, and I've still been fine (out gardening, biking, walking, etc. without covering up. I haven't been to the beach yet, but plan to! Although I'll try to be somewhat smart and spend time under an umbrella, etc). But our big vacation is going to St. Lucia, and I do plan to wear my bikini in the sea! I'm sure the reactions vary by person and circumstance, but I'm guessing if you've been ok on other sun-sensitive meds, you'll be fine on this.

Angtee, sounds like a good approach. Good luck with the diet/exercise changes....that's always good for us generally in addition to hopefully helping ward off recurrence. Would love to hear if you do something with Metformin or if you end up doing any other additional treatments that sound appealing. I've also been taking Vitamin D3 as I've heard it could possibly help (and I don't think it can hurt).

Good luck Valstim--I hope your surgery went well! I have had my fingers crossed for a pCR for you, and smooth healing!


I'd love to keep this thread going, and hear updates from those who have posted, and hopefully hear from others who found themselves with residual TNBC.


Tulips


Dx 4/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Surgery Lumpectomy: Right Chemotherapy Xeloda (capecitabine)
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Jun 15, 2016 07:10PM Angtee15 wrote:

Hi Tulips! I hope you have a great vacation. Rock that bikini!

I did see this pilot study for surveillance of Triple Negatives who have completed their treatment. My MO is on maternity leave but I sent to to the oncologist who is covering her to see what his thoughts were. Anyway, maybe something to consider!

https://clinicaltrials.gov/ct2/show/study/NCT02639832#contacts

A Pilot Surveillance Study to Monitor Natural Killer Cells and Circulating Tumor Cells in Women With Previously Treated Non-metastatic Triple Negative Breast Cancer and Women With Previously Treated Non-metastatic Breast Cancer With a Confirmed BRCA Mutation. - Full Text View - ClinicalTrials.gov

Dx 11/9/2015, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Chemotherapy 12/5/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/11/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 17, 2016 09:48PM kellychameleon wrote:

I'm glad to see this thread here. I met with my MO this morning, and she is recommending Xeloda for me since I didn't get a PCR. We all anticipated that I would since there was no evidence of the tumor by feel, but while it had shrunk, unfortunately it was still there. I hadn't done any research on it prior to my appointment and was a little caught off guard, but I think I'm going to go forward with it. The plan for now is to begin on 7/1. She also wants me to have four infusions of Carboplatin.

I'll have to ask her her thoughts on staying out of the sun. I'm in the same position where staying out of the sun is next to impossible (I have a 6 and 3 year old and a backyard pool)!

Dx 12/15/2015, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 1/12/2016 AC + T (Taxol) Surgery 6/1/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/5/2016 Carboplatin (Paraplatin), Xeloda (capecitabine) Radiation Therapy 1/7/2017 Whole-breast Surgery 4/5/2017 Prophylactic ovary removal Surgery 8/28/2017 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jun 17, 2016 10:03PM TulipsAndDaffodils wrote:

Angtee, there is a thread on the Triple Negative Breast Cancer Foundation forum talking about that Cynvenio trial. Several people there are planning to participate. I think right now it is only based in california, but there are plans to add other sites around the country soon. Thanks for posting about that.

Kelly, I just responded to your post on another thread. Good luck and keep us posted on your progress!

Dx 4/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Surgery Lumpectomy: Right Chemotherapy Xeloda (capecitabine)
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Jun 20, 2016 08:49AM AnnaMO wrote:

Hi! I'm pretty new here and rarely post. I find googling and/or researching TNBC flares up my anxiety, so please forgive me if I'm scarce.

My surgery was May 12. The April MRI looked like PCH, but no. 6/17 nodes positive for residual cancer (3mm - 5mm) and 11mm residual cancer in 38mm tumor bed. There was something in the pathology report about 15% cancer cellularity overall. There were clear margins and no muscle invasion. I'm listed as RCB-3. :(

Xeloda was discussed and my oncologist was ready to prescribe it, but I asked about Carboplatin. Dr discussed my specific case with several colleagues at a. conference. Whatever was discussed swayed him in favor of Carboplatin. I've had my first round of Carbo two weeks ago. There aren't any studies about Carbo reducing risks post surgery like there is the study in Japan, yet I felt in my gut it was the right choice for me. The doctors must have seen something compelling about my specific case to choose Carbo over Xeloda.


Before I received care at the research-based facility i described my chemo care (4 dosedense A/C and 4 taxol) with a different office. I wish I had started my care at the research-based facilty, which has doctors currently researching TNBC and BRCA. (I'm BRCA1.)

May you all have an excellent response to your treatments! I admit I was a little afraid of the hand and foot side effect with Xeloda since taxol gave me issues with neuropathy. I have a 5, 8, and 10 year plus a DH to fight to live for, among others. Hopefully, a PARP inhibitor will become available or some long-term therapy for TNBC.

Anna Dx 12/4/2015, IDC, Right, 2cm, Stage IIIA, Grade 3, 6/17 nodes, ER-/PR-, HER2- Chemotherapy 12/28/2015 AC + T (Taxol) Surgery 5/12/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Prophylactic ovary removal Radiation Therapy 10/10/2016 Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin) Chemotherapy Xeloda (capecitabine)
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Jun 24, 2016 04:16PM kellychameleon wrote:

AnnaMO, I hear you on googling and researching TNBC. REALLY bad for anxiety.

So you are doing the Carbo instead of Xeloda? I'm starting them both at the same time - 7/5. I'm not terribly excited about going through chemo again, but hopefully the side effects won't be too bad. I was really lucky with the AC-T - neither affected me much. I didn't really experience neuropathy at all. I don't know if that correlates with how the side effects will be with these drugs, but I'm crossing my fingers that it will be manageable.

Good luck to you!!

Dx 12/15/2015, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 1/12/2016 AC + T (Taxol) Surgery 6/1/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/5/2016 Carboplatin (Paraplatin), Xeloda (capecitabine) Radiation Therapy 1/7/2017 Whole-breast Surgery 4/5/2017 Prophylactic ovary removal Surgery 8/28/2017 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jun 26, 2016 09:43AM Joy777 wrote:

there is a trial called OLYMPIA for tnbc with brca positive. It's about parp inhibitors... Placebo or parp.

Surgery 4/21/2016 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Dx 4/22/2016, IDC, Left, 3cm, Stage IIA, Grade 3, 0/26 nodes, ER-/PR-, HER2- Chemotherapy 5/29/2016 Surgery 12/12/2016 Prophylactic mastectomy; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 28, 2016 02:00AM knitnpurl wrote:

Hey all

So I've been on Xeloda for two days now. And I'm having absolutely no side effects so far. I'm taking zofran beforehand just to ward off any possible nausea. Is this normal?

I also read in one of the other threads someone recommending lotions for hands and feet at night, I guess to ease any hand and foot syndrome symptoms. I couldn't find what lotions or creams were recommended. Does anyone know? I've got Burt's Bees coconut foot creme that I already love. Would that be good?

Take care all!

Dx 6/2015, IDC, Left, 3cm, Stage IIB, Grade 3, 2/22 nodes, ER-/PR-, HER2- Chemotherapy 8/17/2015 AC + T (Taxol) Surgery 2/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 4/3/2016 Whole-breast: Lymph nodes, Chest wall Chemotherapy 7/26/2016 Xeloda (capecitabine)
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Jun 28, 2016 03:21AM TulipsAndDaffodils wrote:

Hi everyone, I hope you are all having a great start to summer!

KnitPurl, I didn't have any side effects whatsoever until Round 3. I am currently on Round 6. I have had zero nausea or diarrhea (and I'm not taking any anti-nausea meds). The only side effect I've had is hand/foot syndrome, and it's been totally fine. I still have been biking about 20 miles per day, despite the HFS. It has not been bad at all. My hands are totally fine (maybe a little dry?), but my feet have had some stinging on perhaps 5-6 days out of every 21. I am on 3750 mg/day (split half in am, half in pm). I am hoping to go up to 4250 for the last two rounds. I really don't have any other side effects, so I've been living my life 100% normally.

I do apply creams a few times a day. I don't really believe that the creams/lotions "cure" HFS or prevent it, but I think they help soothe the exterior symptoms (i.e. help with dryness, possible cracking, etc). Many people recommend Bag Balm (but I don't like the smell). Also any lotions with Urea (preferable 20%, but 10% ok). Udderly Smooth and Eucerin each make Urea-based lotions (but not ALL of their lotions contain urea, so you have to search the ingredients). Most recently, I read on the "All about Xeloda" thread about mixing your own lotion with T5 antioxidant, and I've been doing that and it is nice and seems to help. Here is a comment on that thread (Doxil has HFS like Xeloda does):

"I wanted to let all who are taking Doxil know, that I have been quite successful at neutralizing the effects of the drug on hands and feet. I compounded at home ingredients similar to what's described in the study above and it worked.

I waited two weeks after the administration of the first dose of Doxil; at that point especially the feet had started peeling, and were itching like crazy. In the meantime I had searched for and bought the crucial ingredient (anti-oxidant concentrate). I mixed it with a good emollient cream, and started applying it to hand and feet mornings and evenings. In less than a week, the side effects abated. Now they are much more bearable: no itching and almost no peeling. I'm still experimenting with different emollient creams, as the base, too see if one works better than the other; however, the active ingredient is the anti-oxidant. I've also found more research validating* the remedy (my oncologist had not heard about it, so I had to dig out more info for her). The manufacturer of the original remedy used in the studies is German but they don't export it to the US because FDA approval would cost top $ for a niche product."

And another person said this:

"I went to the dermatologist at MSKCC and he prescribed 0.05% clebetasol foam and salasylic acid for my hfs. I finally got the clebetasol yesterday so I'll let you know how.it works. I've used the salasylic for a few days now and it's helped a bit. I hope the combo does the trick!"

Basically, I've tried all the lotions I saw recommended, and I think they are all helpful.

Glad you didn't get a bad reaction! I remember I was so nervous to take that first dose! Now it is nothing.

Happy summer!

Tulips


Dx 4/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Surgery Lumpectomy: Right Chemotherapy Xeloda (capecitabine)
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Jul 4, 2016 10:42PM roserosie wrote:

Hi Girls,


Happy 4th of July!!! I wanted to report that I am currently on round 5 of xeloda, and I didn't have any side effects until I hit round three. I had alot of peeling on my feet; and instead of changing my dosage my dr. switched me to one week on one week off, which has been very tolerable. I have some swelling in my hangs and feet but other then that I feel this is a breeeze...... I am looking forward to not being on any medication, but I feel this is very tolerable. Have a great day everyone! Enjoy


Rose

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Jul 5, 2016 12:25PM TulipsAndDaffodils wrote:

Hi Rose,

That's great to hear! I'm so glad you aren't suffering on this treatment, either.

I'm still on the "2 weeks on/1 week off" schedule, except I'm on a special vacation right now, and was worried my feet would hurt (of course the trip lined up with the worst days for my feet), so my MO adjusted my schedule to do "1 week on/1 week off" just for this cycle, so I'd be on an "off" week during my vacation. I took advantage and climbed a very steep tall mountain on this vacation, and just ended up with one blister (honestly, my legs are more sore from the climb than my feet!). So it has been very tolerable for me, too. Just 7 more weeks for me until it's all over, but who's counting? ;-)

Does the peeling hurt, or is it just annoying? I hope your new schedule continues to make this a breeze!

Happy 4th!

Tulips

Dx 4/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Surgery Lumpectomy: Right Chemotherapy Xeloda (capecitabine)
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Jul 9, 2016 05:33PM knitnpurl wrote:

Morning all! Finished round 1 of Xeloda! So far it's been a decent ride. No real side effects except (TMI - but isn't everything with cancer?) a little round robin of constipation and diarrhea, but that's been easily managed with OTC meds. I've probably had a little too much to drink this week with the Fourth of July parties and seeing some friends, but I'm cutting that down anyway because I'm finally trying to lose the weight I gained since I was diagnosed. Just doing calorie counting and trying to eat well - no special regimens. I've also been able to enjoy the pool with the kids despite Xeloda and the intense heat. I've been good with the sunscreen and covering up, so I have tanned (at least for me since I'm normally very pale) but no burning.

Hope you're all doing well and enjoying the summer!

Dx 6/2015, IDC, Left, 3cm, Stage IIB, Grade 3, 2/22 nodes, ER-/PR-, HER2- Chemotherapy 8/17/2015 AC + T (Taxol) Surgery 2/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 4/3/2016 Whole-breast: Lymph nodes, Chest wall Chemotherapy 7/26/2016 Xeloda (capecitabine)
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Jul 9, 2016 06:19PM kellychameleon wrote:

Hi knitnpurl - I'm glad round 1 went well for you! I started my first round on Tuesday, but since I also started Carbo on the same day, I've been feeling pretty exhausted. Other than that, so far so good.

I over indulged with the eating and drinking over the holiday weekend for sure. We were out of town for the weekend visiting lots of friends and family. I'm now really trying to drop some lbs as well.

My surgeon just cleared me to swim, so I think we will be spending a lot of time out there this weekend.

Dx 12/15/2015, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 1/12/2016 AC + T (Taxol) Surgery 6/1/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/5/2016 Carboplatin (Paraplatin), Xeloda (capecitabine) Radiation Therapy 1/7/2017 Whole-breast Surgery 4/5/2017 Prophylactic ovary removal Surgery 8/28/2017 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jul 13, 2016 07:13AM AnnaMO wrote:

Hey, kellychamel!


Yes; my onc had a conference with several of his peers. He said there was one hold out for Xeloda, which he said is a good thing to have someone make you think. By the end of their discussion of my case the were unanimous - Carboplatin. Why? I have the BRCA1 gene and Carbo has proven very effective with BRCA1/TNBC.


So far I've had two rounds. Next Monday will be my 3rd infusion and 3 weeks later (Aug. 8th) my 4th and last infusion. Hopefully, my platelet level doesn't drop any more. It was 98 at my last lab. This Friday, I'm crossing my fingers that it's all good.

So, I'm only receiving carbo. It's been easy tolerate. Just a little bit of nausea three days later. No bone ache round 1, but some bone ache after round 2. Maybe it was the lower platelets? Hmm.

After chemo it's on to radiation. My 6 year old asks when this will be over and I tell her only a couple more months. Now, I try to avoid research on radiation treatment. And the article about endometrial cancer and BRCA1 didn't help with my anxiety, but I forwarded the study to my gynecologist to see if my BSO was aggressive enough. I've no history of HPV and never had an abnormal pap, which is why I went with BSO instead of full hysterectomy.

Is there any news about when a Parp inhibitor will be available to TNBC and/or BRCA? There is some comfort in actively receiving treatment. When treatment is complete I'll need to keep very busy and move on living my life fearlessly.

Anna

Anna Dx 12/4/2015, IDC, Right, 2cm, Stage IIIA, Grade 3, 6/17 nodes, ER-/PR-, HER2- Chemotherapy 12/28/2015 AC + T (Taxol) Surgery 5/12/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Prophylactic ovary removal Radiation Therapy 10/10/2016 Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin) Chemotherapy Xeloda (capecitabine)
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Jul 13, 2016 07:18PM Joy777 wrote:

There is a trial available for tnbc + brca positive with parp inhibitors. It is called olympia trial. You can search on the internet for it, or ask your onc. I know about it from my onc in milan, italy.

Surgery 4/21/2016 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Dx 4/22/2016, IDC, Left, 3cm, Stage IIA, Grade 3, 0/26 nodes, ER-/PR-, HER2- Chemotherapy 5/29/2016 Surgery 12/12/2016 Prophylactic mastectomy; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 15, 2016 05:01PM Jacklin wrote:

My MO told me this week that I'm going to have Xeloda, so here's another woman having it. I start Aug 15, 4 weeks after my rads finishes. Rads finishes today, hurray!! I will post how things are going while I'm on Xeloda. I will be starting at 2000mg twice daily for a total of 4000mg (My BSA is 2.16).


Dx 11/27/2015, IDC, Left, 6cm+, Stage IIIC, Grade 3, 2/25 nodes, ER-/PR-, HER2- Chemotherapy 12/3/2015 AC + T (Taxol) Surgery 4/25/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Radiation Therapy 6/10/2016 Whole-breast: Breast, Lymph nodes Chemotherapy 8/14/2016 Xeloda (capecitabine)
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Jul 15, 2016 09:57PM TulipsAndDaffodils wrote:

Is this Jacklin from the TNBC Foundation website? If yes, then Hooray! Sounds like insurance is covering it! I'm so happy for you to finish radiation. Even though I didn't find rads that bad, it was such a pain in the neck going daily, and another milestone to check off finishing! So congrats!! My fingers are crossed that Xeloda is easy for you, and gives you the extra protection that we all want.

Anna: good luck with the carbo and the rest of treatment!

Kellychameleon, have fun swimming! And good luck with treatment. Keep us posted.

Knitpurl, so glad that Round 1 went well. Great news!

As for me, I just finished Round 6, two more to go. I've been on 2250 mg per meter squared, which for me has been 3750 mg total per day (BSA around 1.65). I believe the "full" recommended dose that was tested in the CREATE X trial was 2500 mg per meter squared. My MO didn't want me to have severe side effects, so we started at 2000, then went to 2250. I just asked if I could do 2500 for rounds 7 & 8 because I've really not suffered at all, and I thinkI'd like the peace of mind of at least having the full dose for a few rounds. I'm not too worried,because the vast majority of the women in the CREATE X trial had to dose-reduce,and they still saw dramatic success. But I still feel like I'd like to increase my dose for the last 2. So fingers crossed that works out ok.

I'm doing a bike ride for cancer on Sunday. Choice of 25,50, or 75 miles. Hoping to do 50. Biking doesn't hurt my feet. I did manage a 3 mile run today, no problem on feet. But I was as slow as molasses. I'm sure people could walk faster than I ran!! But it feels good to not let cancer sideline us!!!

Happy weekend!




Dx 4/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Surgery Lumpectomy: Right Chemotherapy Xeloda (capecitabine)
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Jul 17, 2016 03:47AM Jacklin wrote:

Hi Tulipsanddaffodils, guilty as charged. I've been discovered!! I believe that you're Tulips on the same site???? I recognize your enthusiasm for treatment. Yes, I'm so glad rads is done and it is a pain going every day, the drive is about an hour each way for me. I find that I have tightness in my chest and my armpit, but I know that'll subside over time. I'll use the next 4 weeks before starting Xeloda to rest and allow my body to heal as much as possible.

Yes, the cost of my Xeloda treatments are being covered by the drug manufacturer on compassionate grounds. Wow, what a beautiful gift from them, I only wish I knew who to thank 'cause I'd like to do that.

Thank you so much for posting how you're doing on Xeloda.

Have a good night everyone,

J

Dx 11/27/2015, IDC, Left, 6cm+, Stage IIIC, Grade 3, 2/25 nodes, ER-/PR-, HER2- Chemotherapy 12/3/2015 AC + T (Taxol) Surgery 4/25/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Radiation Therapy 6/10/2016 Whole-breast: Breast, Lymph nodes Chemotherapy 8/14/2016 Xeloda (capecitabine)
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Jul 20, 2016 01:56AM knitnpurl wrote:

So, first I have to share. This past Saturday both of my kids had birthday parties to attend and since one was 11-2 and the second 3-5, we decided to just do them both and exhaust the whole family. The first one was at the roller skating rink. Now, this is the Saturday of my off week and I'm feeling good. My kids can't really skate so they're out on the floor using the pvc walkers (wish they had these when I was little) and I'm out there in my sneakers helping them up. After a while, I decided I just had to join them and rented a pair of skates for myself. I haven't skated in 20 years! I didn't fall, but did flail a bit and got my balance back. I thought my legs were going to hurt on Sunday but it was my arms and shoulders! I had so much fun.

Happy

Now - a Xeloda question. Did anyone have any vision issues while on it? I realize I'm getting old, and I've always needed glasses but everything seems fuzzier since starting the drug. I just got my glasses last year so that's a new prescription. My sight did the same thing while on AC-T and I thought I would need new glasses/contacts sooner, but then everything sharpened up in the month or so after chemo was over. I'm seeing the eye doctor next week and want to let her know if that's something that could be interfering with my vision.

Tulips - how was your bike ride?

Kellychameleon - How are you feeling? I haven't had carbo, but I heard it can be rough. Have you been able to swim? I've been considering water aerobics since I need to lose weight and I wouldn't have to worry about my hands and feet getting too much friction. I took swimming lessons when I was a kid but never really learned how to do a proper freestyle stroke. I'm contemplating swimming lessons just to get that figured out!

Dx 6/2015, IDC, Left, 3cm, Stage IIB, Grade 3, 2/22 nodes, ER-/PR-, HER2- Chemotherapy 8/17/2015 AC + T (Taxol) Surgery 2/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 4/3/2016 Whole-breast: Lymph nodes, Chest wall Chemotherapy 7/26/2016 Xeloda (capecitabine)
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Jul 20, 2016 05:39AM - edited Jul 20, 2016 05:39AM by aggiemegs

Hey all! I'm going to be jumping on the Xeloda wagon soon. Still waiting for insurance approval, which is making me crazy, because I was really hoping to start it this past Sunday! Any of you have issues with insurance?

Also, seems like the longer I wait, the more I start to second guess whether or not I should take it! Reading through your posts make it sound not so bad though...I am super paranoid about losing my hair again though, lol. Also worried about how run down it'll make me feel. So ready to just be back to normal again. I've gained 30 lbs since my diagnosis, and I really need to get rid of it.

Looking forward to getting to know y'all better

Meghan, 33 at diagnosis, 2 young boys (2 & 5) Dx 9/9/2015, DCIS/IDC, Left, 1cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 9/24/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 3/3/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy 7/23/2016 Xeloda (capecitabine) Surgery 5/26/2017 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jul 20, 2016 06:33PM knitnpurl wrote:

Hi aggiemegs! I completely understand what you're going through. While I was so worried and upset about going back on chemo for several more months, I just couldn't pass up the opportunity to have one more thing to use to try to keep the cancer from coming back. I'm just on my second round and the worst side effect seems to be diarrhea. So far I've been able to control that with OTC medicine too. I'm just drinking enough water and otherwise enjoying life right now.

I also gained about 25 lbs since I was diagnosed. And I was mad at that because I had already gained 20 lbs before I was diagnosed. I wanted to lose that but then cancer got thrown my way. My doctor did give the ok for me to lose weight while on Xeloda. Even when I was gaining during AC-T, the doctors didn't want me to gain, but they certainly didn't advocate for losing at that time. I've already lost a total of 15 lbs and have another 10 to go to get to where I was last year. I'm just using My Fitness Pal and counting calories.

Keep us posted and hope all is going well.

Dx 6/2015, IDC, Left, 3cm, Stage IIB, Grade 3, 2/22 nodes, ER-/PR-, HER2- Chemotherapy 8/17/2015 AC + T (Taxol) Surgery 2/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 4/3/2016 Whole-breast: Lymph nodes, Chest wall Chemotherapy 7/26/2016 Xeloda (capecitabine)
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Jul 20, 2016 08:58PM kellychameleon wrote:

I just finished round 1 and was fine until the last few days. I ended up skipping my last dose on Monday night. I woke up on Sunday morning and my feet felt like they were on fire. They're still really sore, and I'm limping around. The nurse had me email her pictures of my feet, but she said they didn't look bad enough to be alarmed. I also got really bad diarrhea on Monday, which was the reason I skipped the last dose. I couldn't eat dinner and just felt bad all around. Thankfully that has subsided, but I still feel sick to my stomach. I'm two weeks out from my Carbo infusion, so I'm assuming it's Xeloda that's causing the problems. I go in for my next infusion and start my next round of Xeloda next Tuesday, so I'll discuss it with my doctor and see if maybe we should lower the dose a bit. I have three trips planned over the next few months, and I don't have time for this! I hate cancer getting in the way of fun things.

Knitnpurl, I've gotten in the pool but haven't really done any actual swimming. My upper body is still sore and weak from my surgery. Water aerobics is a good idea though. I've just been walking on the treadmill for exercise, but I really want to start running again and going to classes (step, zumba, yoga). It's hard getting the motivation right now when I feel sore and run down.

Dx 12/15/2015, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 1/12/2016 AC + T (Taxol) Surgery 6/1/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/5/2016 Carboplatin (Paraplatin), Xeloda (capecitabine) Radiation Therapy 1/7/2017 Whole-breast Surgery 4/5/2017 Prophylactic ovary removal Surgery 8/28/2017 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap

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