Xeloda and TNBC
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The testing was for either 6 or 8 cycles. I was put on 6 cycles to begin with. I asked for 8 cycles which MO said OK after he saw how I responded to the previous 6 cycles. I've had to reduce prescription by 500mg (1 pill per day) and I've taken time off (more than the 7 days) as needed to recover more from Hand Foot Syndrome.
I start cycle 8 at the end of this week.
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Sam0623, My MO plans for me to take 8 cycles. I am hoping for the drug to arrive this week from the specialty pharmacy so that I can begin on February 4th. Not looking forward to it, but ready to get on with it so I can finish.
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I'm scheduled for 8. Starting round 6 this week
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Thanks ladies. I will clarify with her when I go back in 2 weeks. I am in the middle of cycle 3, and so far so good- I hope she'd be willing to do the full 8. I do worry I may need a break before I am finished as my white count is steadily declining. I unfortunately may need an extra week off to catch up.
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I've been on X for more than 5 months. And will start my first "real" cycle on Monday.
By that, I mean 2 weeks on/1 week off vs. the unusual 5 days on/2 days off my Former oncologist had me on. My dose also will be increased to where the study data would put it.
My new MO told me that while my previous dose and cycle didn't follow protocol, the benefits should be the same or similar. But without those things having been studied, it's hard to say for certain. I'm glad I get one study-based cycle. I'm also glad I questioned the old MO twice about this so I can't beat myself up about not saying anything.
You can't undo what wasn't done.
Reviews of the old onc's work show things not done or done very differently from protocol. I lost faith in her months ago, but had no clue what to do. Maybe this will help someone else:
- Trust your gut.
- If your doctor doesn't answer your questions or explain things to you, find someone who will.
- You can get a second opinion at any point in the process. www.cancer.gov has a chat box where a rep can give you info on places to get a 2nd opinion within driving distance of your zip code. They also can tell you what the standard treatment protocol is, send links to publications as well as to free databases where you can do your own research.
- IMO: If you feel like your job as a patient is to show up, shut-up and do what you're told - proceed to the nearest exit and run like hell.
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My Xeloda was finally approved by insurance so I will start taking it tomorrow. I plan to get up and have breakfast then take my 3 500mg pills and head on to church. I'm assuming there will not be any "immediate" side-effects!
I'm prepared for the worst but praying for the best so hopefully side effects won't be too bad. Hope everyone is doing well!
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I am in the middle of my third cycle of X. So far, the side effects have been pretty easy to handle. I have experienced nausea on the 2nd and 3rd days of starting the drug after the rest cycles. Some fatigue and general yucky flu like aches and pains around days 10-14; and the hand foot syndrome has effected my hands - not feet yet. I am using cotton gloves now when I am working and that seems to have slowed the progression of the cracking fingertips. The prescription lotion heals the skin overnight - almost 90% of the time. I found some summer driving gloves on Amazon that I wear at work to protect the skin and that has helped a great deal. I don't like the general overall yucky feeling that I get, but I know it won't last forever. My sleep has been interrupted as well. I can't seem to sleep more than 3 hours at a stretch. I take lorazepam every now and again to catch up on sleep.
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deehenn...what is the prescription lotion you are using? Glad to hear your side effects have been manageable.
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Not an answer to the prescription from above, but..
I just started my eight cycle of Xeloda (I asked for the extra 2). My side effects are mostly Hand Foot Syndrome. After 3 cycles, things were pretty bad and my dose was lowered by 500mg (3500mg) and I tried to think how I could improve HF Syndome, so I stopped walking for exercise and recreation. That was a big help. I don't know why I thought the amount of walking I did was not a problem with Xeloda. I had to take a longer breaks 3 times. After the 3rd cycle I took 16 days, after 6th cycle I took 10 days, after 7th cycle I took 10 days. So now I'm 2 days into cycle 8, I have had to stop grocery shopping and doing lots of walking around the house. I wear my iphone and the days I stay below 1.0 mile I'm ok and the days I go above 1 mile are problems. I'm using 40% Urea which I got off amazon. If you ever get to this place, check the ingredients of the Urea40%, some have parabens in, and some don't. The kind I"m using now is called "UREA 40"
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The cream is: Triamcinolone Acetonide Creasm USP 0.1%
I use it twice a day to keep the cracked skin on the fingertips from getting out of control.
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Hi there!
I am considered Triple Negative but have 5% e+ DCIS. When it's that low, it's still considered TN.
I don't like the way this forum is set up. We can't explain in our profile that we are very weakly hormone positive.
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Hi ladies - I will be jumping on the Xeloda wagon soon. Has everyone had Xeloda mixed with Carbo? I was diagnosed as stage 1 in October and went direction on to AC, which seemed to work. I moved onto Taxol and sadly that didn't. the tumor actually grew and ended up in 4 out of 15 nodes, which has broken my heart. I had a mastectomy and the full dissection .I'm not state III. one less node and i'd be stage II apparently.
The surgery felt everything went really well and the cancer is out but we all know that means heading back to chemo and radiation to ensure everything is killed. I start radiation, 5 weeks, I believe next week. the waiting has been torture as my surgery was 2/5. I've been following a study about the rucaparbin which is drug that is being considered to treat TN patients and can happen while on radiation. curious to hear more about that! also part of my tumor was ER+ ugh...so i'm taking Tomoxafin too. i'm so scared when I hear all the information from doctors or google but when I see the posts here, it makes me feel much more positive. I have little ones at home and have no plans to leave them
looking forward to getting to know you all.
Tracey
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TraceyLou, welcome to you!
We hate the reasons that bring you here, but we are so glad you found us. You're sure to find our Community an incredible source of information, support, advice and encouragement. We look forward to hearing more from you as you navigate your treatment journey, and please let us know if you need any help at all!
--The Mods
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Hi there everyone,
Sorry for the "double posting" since I have put this on another thread too. (There are 2 threads for xeloda and tnbc.) I am from the US, but am now living in Vienna, Austria. It is not yet standard here to treat patients adjuvantly with Xeloda (It is only used for metastasis).
I had good response to AC + T, but not complete. I guess the right way to call the response is: ypT1c, with 0/17 nodes (At biopsy, 2 nodes tested positive). I completed chemotherapy in March 2017, then surgery in April and completed radiation in July 2017.
I just now learned about the study from Japan and am really excited to try Xeloda, despite some of the side effects. But I am "outside" the parameters of the study, since I completed radiation 6 months ago.
My question: 1) does anyone have experience - with taking Xeloda this much after treatment has ended (6 months)?
I wish I had know about Xeloda earlier! Thank you from Vienna.
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Alabama Austria - Xeloda for non-stage 4 cancer just became standard in the US, June 1, 2017. So it is very new. I ended radiation early August and started Xeloda late August. I just finished 8 cycles 2 weeks ago. So not even 3 months after it became standard, i was able to take it.
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Hi guys,
During my 4th round of Xeloda, I had a terrible set of side effects: severe headache which had random electrical shocks shooting through my brain that caused me to lose my balance and fall in pain. I could not stand, walk, work. My oncologist has taken me off for 3 weeks. I have established an appointment with a neurologist who is going to conduct chemistry tests of my blood and brain and DNA testing to see if the chemistry of the Xeloda is causing these seizure type headaches.
I am 10 days off the Xeloda now and I am exhausted. I have a headache all the time. A rash has developed on my arms and the skin on my fingertips have cracked.
I am feeling more irritation and depression.
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Hello, everyone.
I had neo-adjuvant chemo for my TNBC followed by a lumpectomy last week. I'll follow this with whole breast radiation soon.
Originally my MO had been saying I'd go on Xeloda after radiation. Luckily I got a pCR after surgery meaning that the chemo had killed all visible cancer where my tumor had been + clean nodes.
I'll see my MO in a week and can ask her then, but in the meantime has anyone here gone on Xeloda after getting a pCR?
Thanks to you all for sharing your experiences.
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AgathaNYC...that's awesome news that you had a pcr. I had a good response, but not complete. My understanding was that Xeloda was being offered for TNBC patients that did not get the pcr. So, maybe that is a step that you can skip. Good luck with radiation - hope all goes well!
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@Hanging in there, thanks for getting back to me! It seems I missed the bandwagon for taking Xeloda. I have an appointment today with a new oncologist to ask if it makes sense to take it now (since I am 8 months out from radiation), but my impression is that most doctors think there is no point. I am pretty upset that I missed this opportunity, but I am trying to go with the flow.
@AgathaNYC, what absolutely great news about your pCR. Thank you for sharing!
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AlabamaAustria...there is also a clinical trial for Keytruda. I believe Keytruda is normally used for lung cancer but they are doing a trial with TNBC where there was not a complete response. I wanted to do it - entered the trial but was not randomized to receive the drug. It is an infusion, if I remember correctly you go once every 3 weeks for a year. Again, I don't know if being 8 months post radiation would impact your eligibility, but you might want to ask your MO about it as another option.
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Just an update - saw my MO and no Xeloda for me after my pCR. Just post-lumpectomy radiation and I'm done.
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Ladies, I am Joining your club! I can't believe I am happy to be getting more chemo but I am! What is the worst side effect you have had and how are your blood counts?
I won't start for a month because I need to finish rads.
Rebekah
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Welcome Rebekah...so glad they are trying the Xeloda for you. I just started cycle 3 yesterday and have had very minimal, really no side effects. Every now and then I feel the slightest bit of nausea or slightly run down but it's not bad. My hands and feet have held up fine so far. I don't know if worse side effects will come as I proceed but so far so good. My blood counts have been good as well. My MO said she doesn't expect low red and white blood cell counts, that she is mainly looking at my kidney and liver function in the numbers to be sure no problems are arising. I hope your experience is good!
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I am just starting round 8/8. Last round, my feet were a hurting situation. Lots of peeling and very sore. It cleared up in a week. So I’m starting my last round at the same dose and will reduce it if my feet get bad. It was pretty bearable until the last couple of days on round 7
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Just got the call about my wife's latest PET/CT scan results. No change from last test done 6 months ago. My wife said, "I can live with that." She had her ER/PR+ from 2013, Stage 4 turn triple negative one year ago with numerous small mets to her spine. Xeloda has, so far, reduced the number of mets and reduced the SUV of the remaining ones. Her Oncologist says it's not a race but a marathon, and as long as it's being held at bay he's okay with that.
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SoniaL, glad to hear you have had minimal SE’s. I do worry about my blood counts because I was hospitalized for neutropenia on A/C, but that is such a harder regimen so we’ll see! Hope you continue with good results.
IntegraGirl, that sucks you are getting HFS right towards the end. Hang in there! You are so close!
Mike, good that things are stable! I hope Xeloda will keep things at bay for a ling time. Has your wide been tolerating it well?
Best Wishes All
Rebekah
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Just came back from a visit with my wife's oncologist. According to her latest PET/CT scan, no new cancer, but her existing mets (mostly in her spine) has gotten bigger. Not by much, but they have gained in SUV count. Dr. will now schedule PET/CT scans every 3 months to watch it better. He did say that sometimes the cancer grows just before it dies off. Maybe Xeloda is no longer working. She's been on it for about a year so far. It never really eradicated the cancer.
Not all good news so far.
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Congrats AgathaUSA!
Mike3121, I'm sorry your wife's treatment is not going as well as all would have liked. I looked up SUV in the abbreviations and couldn't find it.
AlabamaAustria and SoniaL, I think the clinical trial with Keytruda is for TNBC plus BRAC1, but you'll need to check. I have a facebook friend who is TNBC and we are about at the same place. She was going to take Xeloda and then got into the Keytruda trial, she is BRCA1. Go to breastcancertrials.org and see about clinical trials.
Rebekah, you have not started Xeloda yet, I finished 8 cycles on Feb 23, 2018. Don't do what I did:
Let me tell you about the big mistake I made in the first 3 cycles of Xeloda. I had no symptoms. I continued to walk for exercise and recreation for the first 3 cycles. I think all that walking made it so on later cycles, I got really bad Hand and Food Syndrome. I didn't get enough instruction about NOT walking for any exercise or other than the things I would do normally. I have had to stop taking xeloda at least 3 times. One time was 16 days instead of 7 another was 14 and another as 15. But I have had severe symptoms of HF Syndrome. Red feet, some peeling (not bad) but very sensitive feet that change to pain after a certain amount of time. I have not been able to even take yoga for 3 or 4 months. I'm a month off Xeloda, and although I'm getting improvement, I have not recovered yet. My feet still hurt. I have been usually good until 2 miles (throughout the day --- that is just walking around the house - which is very small but walking from car to appointments, grocery shopping etc. ) I did 8 cycles, 2 weeks on and 1 week off.
I was using UREA 40% during Xeloda, but stopped putting it on when I first found some improvement after Xeloda. Now I'm starting to do it again, because I think UREA 40% helps a lot more than body lotion.
(I got UREA40% off of Amazon --- look at the ingredients and pick one without parabens. https://www.amazon.com/Percent-Cream-Hands-Elbows-...=sr_1_2_a_it?ie=UTF8&qid=1522368365&sr=8-2&keywords=urea+40
This is the one without parabens I bought. Originally I bought the one that comes up first but it turned out to have parabens in it.
We just took a 3 day spring break in Baltimore Inner Harbor, which I thought would be not so much walking because everything is in the same area, but day 1, I walked 4.5 miles and that was too much. Day 2, I walked 3.4 miles (iphone tells me). I am was really hurting. Day 3, not so much, I'm letting my feet heal.
So just a caution to stop doing things early on so you don't get to where I am with my feet. Doctor said my severe symptoms should go away in a month (that is about 10 days ago). I think I just have to stop walking and I'm so done with that. I guess the 2 miles I walk on a normal day is not helping me heal. My hands are much better (not totally), but the feet have only gotten a little better.
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An SUV of 2.5 or higher is generally considered to be indicative of malignant tissue. SUV or Standardized Uptake Value is how bright cancer tumors lights up in the PET scan. I think the range is 2.5 (normal) to 13. My wife's 3.4 SUV went to 4.9 which shows activity.
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Mike, so sorry to hear about the SUV increase. I will cross fingers that it is the die off theory.
HangingInThere, Good to know about the walking because that is the main form of exercise I get. Hmmmm, what is a good replacement? Yoga I guess? Or swimming, which I don’t really do. I will have to think about that.
There is a Keytruda trial right now that doesn’t require that you are BRCA positive. You can find it on clinicalteials.gov but if anyone wants the NCT number I can drag it out.
Rebeka
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