Xeloda and TNBC
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Trishyla - I might rethink the Udderly smooth when/if I get HFS. I haven't shopped at WF much, but I did like not having to read the ingredients of every single bottle of lotion.
Feline Mum
Chemo brain is really real. I've got chemo brain. I stopped carrying a purse and put my wallet and sunglasses in a waist pouch and my iphone in a second one and put them around my waist. I had left my purse at restaurants and at home so often I had to come up with another plan. I have left my wallet/sunglasses pouch just once. So I'm doing better with the new combo. Could you post the study, I'm interested in reading about the study.
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Ahhhhh...chemo brain. Some days are worse than others. I always thought if I got sick I'd lay around and read books all day and watch movies - now my brain can't follow along as well.
I have a friend who I don't feel is supporting me anymore - my fingers swell and they're not as bad as her friend who died from breast cancer, my feet peel form H/F syndrome and it's dry skin, i have muscle aches and I'm just getting old, I have nausea and other people have reflux, and so on. I don't complain a lot but I feel she is not listening. Yes, I am getting older anyway. Maybe she feels like she needs to belittle everything because it makes her feel better. I just want to be recognized that a lot of shit has happened to my body in the last year. My other friends recognize this and when they ask how I am feeling I tell them and then we laugh and we make fun of things -like the phantom boob itching. But they understand that I am going through a lot. If they aren't side effects then I am just getting hit with everything at once and my body is tired of 8 months+ of chemo. (Rant over)
I like Udderly Smooth but am now concerned about the parabens, too. But I also wonder if it really matters. I was being so healthy - eating whole foods, nothing processed, getting lots of fruits and veggies, meditating, doing yoga and I got cancer anyway! I'm not saying that I should stop all this but I've pumped tons of chemo poison in my body - should I worry about parabens and eating a Tastycake every now and then?
Mike3121 - you have been a warrior twice in your life. Once in war and now for your wife. Thank you so much for your service, your sacrifice, and your love for your wife.
Just FYI, my brother was a helicopter pilot and little did I even realize that his chances were not good. His copter was shot down in 1968 while he was doing a reconnaissance mission picking up soldiers - some wounded. The Viet Cong hit the gas tank and the copter exploded killing all 10. 2 months later my only niece was born. She grew up to be a gynecologist and now is my angel. She is helping me through this cancer journey with all her knowledge and her friend's knowledge. A lot of them are breast surgeons or other types of doctor's with female specialties. I get her knowledge and we have formed a closeness. Sometimes I feel my brother sent her to take care of me.
Blessings to all! Have a happy day!
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Random thoughts:
Parabens and such: My uncle had stomach cancer. He's an accomplished athlete who's completed several Iron Mans. He and my aunt were (and are) almost neurotic about super healthy eating and leading a healthy lifestyle. He still got cancer. Cancer is the great equalizer. It can and does strike anyone. Non-smokers can get lung cancer. Chain smokers may live long, cancer-free lives. Etc. Etc. Etc. Do what makes sense for you. IMHO
People have asked if my being "heavy" or having large breasts caused my cancer. I rather like seeing their faces fall when I tell them "No. My biggest 'risk factor' is my age. Being fat has nothing to do with it." Negativity like that no longer has a place in my life. If I can cut-out people like that from my life, I do. My mind and emotions are valuable real estate and they can't afford the rent. Evict!
Now is a great time to read fluff aka genre fiction. Ever read a Harlequin romance? Why not now? I recommend buying them at used book stores or thrift stores. The tackier the title, the campier the read. There are sub-genres, ranging from Inspirational Romance (G-rated for God and non-racy content) to Amish Bonnet Snatchers (bad bodice ripper pun). Light hearted mysteries by authors like Janet Evanovich are easy to pick up, put down and pick up again later. When my ADD attention span takes over, I'll often read magazines. I do have ADD, so not a rude adjective. I actually use this as a guide to how my focus is: not reading, reading only parts of magazines, reading a whole magazine, etc. Thrift stores can be a good place to pick up back issues or read a new-to-you magazine.
The chemo brain study I'm in: I'll know more in about 2 weeks when I have orientation. It's a brand new trial and I'm the first official participant for my site. I was told the University of Rochester (NY) did studies proving the existence of chemo brain. That might be worth Googling.
Cycle 3 is done! Twenty-one 7-day cycles to go. What I've read says that if H&F and other SE stay mild to moderate during the first six weeks, the odds of doing a full course are pretty good. Three weeks to go on that.
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Warrior2016 phantom boob, so funny, I'm going to use that, chemo brain is keeping me from being my clever funny self.
Feline Mum - my chemo brain, I just watch youtube videos and play stupid games on my phone. The one thing I play that makes me think is Sudoku. Thank G-- I can still do that.
My chemo brain has gotten worse. At one point in my treatment, I was reading a lot of books, I think it was during chemo. now after chemo, I haven't read many books. I'm reading children's books. Ones that my son doesn't want to read that got Newberry awards. I am 6 months PFC two days ago.
The 6 month PFC date has been on my calendar since I finished because that is the day I'm supposed to be able to go back to normal hair routines. I cold capped. I'm still losing hair, so they were wrong about that. I have 5% of my hair left, but can still get by looking pretty normal because I started out with and incredible amount of hair. I ordered some hats I'm going to wear this fall and winter as more hair grows in. I have never gotten a wig, I'm going with hats. But not chemo hats, real hats. I like hats.
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FelineMum - I get what you're saying about the reading. I actually read some Nora Roberts - quick, easy, and not a dense plot. I have so many books to read but my brain can't handle a lot right now. My eyes aren't good either. Right before my diagnosis I had cataract surgery and lenses implanted. Besides dry eye the shape of my cornea has changed since chemo and the lenses don't fit right. My eye doctor said I will probably go back to normal when chemo is done. I have a friend who had the same thing and she went back to her old prescription after chemo.
I am on day #13 of a 2 week break and the exhaustion isn't getting any better. The feet are stinging and in full peel right now. My nails have all of a sudden turned to paper thin. I take biotin, keep my nails as short as I can, and use gel nail polish to add some strength and now my nails bend so much that 3 have ripped halfway back and 2 are cracked. Any suggestions?
I have been depressed again since yesterday. Celebrated my 1 year since finding my tumor alone. Friends are too busy with life, kids are busy, and my husband doesn't get the meaning of the 1 year. My friends are all off to London, North Carolina, New England, going to wine festivals, buying tandem bikes and the highlight of my day was vacuuming the first floor. I tried to do things for fun this week - lost my week at the beach, had 2 friends coming to visit and 1 got a phone call from her upset daughter and 1 forgot. I couldn't find anyone to go to the wine festival with. My life sucks. I did a lot of volunteering before cancer and most of it I had to stop. I did things like going on Honor Buses with veterans but I am too tired to spend a day walking around the monuments in D.C. and I helped at Olivia's House - a grief and loss center for children. Most of them lost a parent and many were from cancer - they didn't need to see me losing my hair, wearing a wig, and so on. I only retained one thing and that is being the event coordinator for Wreaths Across America in our town. Sometimes it is hard to even get the work done for that.
I feel like Wendy Whiner right now (for those of you who watched the older Saturday Night Lives!). Just can't get my head straight and I am dreading starting the chemo back up on Tuesday. My nauseousness is almost gone and I know it will hit me hard again.
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Hi, all! I'm thinking of you and keeping you in my prayers. It's taken over a week for my feet to feel better. I had a second big peel session after cycle six. I'm still feeling fatigue especially in mid afternoon. Could be because I sleep poorly - wake up every two hours and gets bouts of anxiety. We've received word my 89 yr old dad has stage 3 lung cancer and he says elected not to get treatment. My mom died 6 yrs ago after a long battle with Parkinson's. It's so tough to see those we love suffer.
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Yikes. IRL I'd use a different word or two, but still - Warrior and SuprSurvivr, you both have very full plates.
SuprSurvivr: I'm so sorry about your Dad. I don't know what else to say, so I'm sending cyber hugs *HUG*
Warrior: What you described sucks. I'm sorry the people you count on aren't there for you right now. And right now, you need them to be. I don't know enough about X's SE to offer any advice - does the pharmacy you get X from have a person or phone number to call to ask questions about SE and dealing with them? I've noticed my BS and her staff don't seem to know as much as they say they do. So, I've started outsourcing my questions to other medical professionals, like pharmacists and nurses. Gel nail polish can be drying, especially removing it. Maybe switch to just a nourishing, strengthening top coat? Sally Hanson has some good ones.
I've been feeling depressed for about two months. Not 24/7 but more than normal. I have clinical depression, so I was getting worried. BS and staff said it was a 100% normal post-op emotion and I've also had a lot of non-cancer stress, so don't worry about it ... but I knew it wasn't _my_ normal. Long story short, I saw my psychiatrist before my next scheduled med review and he agreed we should adjust my meds. I'm already noticing an improvement.
Seeing someone, whether to talk or for medication or for both, doesn't mean you're mentally ill. There are countless situations where help is just that: Help. There's also no shame in having a mental illness. What too few people seem to know is that mental illness is caused by a chemical imbalance in the brain. With all the chemicals percolating in our bodies, I wouldn't be surprised if the blues we get could be more than 'just a mood.' Sometimes, having someone you can confidentially talk to about anything without being judged can be a sanity saver. As can knowing that how you feel is valid and getting suggestions on ways to cope. Not that a good therapist always agrees with someone. Good ones make you think and ask questions.
I would encourage anyone who's feeling overwhelmed or depressed or isolated or just not okay, to consider seeing a mental health professional for an evaluation. Doing so didn't mean I was crazy. It's kept me sane.
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FelineMum- I started an antidepressant for situational depression about 6 weeks ago and I have been seeing a therapist for close to 2 years. When I retired I lost myself so I had to reinvent my life. I thought I had enough planned for my retirement but I was mistaken. MY husband had been retired for years and we were going to travel. 2 months after I retired he was diagnosed with prostrate cancer, an advanced case, so traveling got put on hold and then I was just unable to get him moving. My friends and I were going to do a million and one things but they all got busy with family. It seems I picked friends that all come from large families - i of 13, 1 of 9, 8,7, and so on. They are either spending more time with siblings or taking care of aging parents. I have no family left - 1 uncle in Florida and scattered cousins from Florida to Canada. I have 5 children, but only 1 lives close by and she seems too busy with her life to see us on a regular basis. I hope it's only a phase. So, anyway, things didn't work out as planned and I sought help to redefine my life. I actually saw a life coach, too. I got my life back on a new track and wham, cancer showed up! I continued seeing the therapist because I really like her and I enjoy looking at my life and striving to become a better and happier person. I have no mental health stigma at all.
I may stop the gel nail polish...have to think about that. I never had nice nails till I started to get them done years ago and now I hate to give them up. Of course, if they keep cracking and breaking I won't have nice nails anyway!
Suprsurvivr- So sorry to hear about your dad. It is hard to watch our loved ones go, but, I think it is especially hard to deal with when you are dealing with your own health issues. Blessiings and hugs to you.
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Hey ladies!
The board's been a little quiet. I've been busy with a million medical appointments of all different types. Oddly enough, I met my maximum out-of-pocket spending for the year, so it's now time to play catch up on non-cancer stuff. I'm finally doing physical therapy for my spine again. Such a relief. I've never been this good about doing my at-home exercises before.
My temporary expanders have two more fills left. After today's fill, I feel huge. I do like that my PS takes a gradual approach. I've read horror stories of women getting 100 ccs at once for their final "overfill" pre-rads. My PS took it down 10 ccs last week because of how sore I was afterward. I met with my nurse today and we talked about likely outcomes. I showed her the article and photos in O(prah) Magazine's current issue on mastectomies and options afterward. The pics are starkly honest, albeit many are worst case scenario. .... and so many of the models are TN.
Tomorrow will be my last "on" day of Week Four for X. Total as of Sunday 9/24: 21 days on; 8 days off. Side effects are about the same: The bottoms of my feet are tender. Socks with shoes or hard soled slippers help a lot. Walking barefoot hurts. Too much time on my feet hurts too. Morning nausea. Taking anti-nausea meds with breakfast before X helps more than anti-nausea meds after X. My hands are itchy and start to burn if I use them a lot. I sorta feel like I'm wrapping my hands and feet in imaginary bubble wrap so they don't get damaged. That makes using them much almost impossible, but this frustration is better than the alternatives. I hope.
I'm estimating I'll be done with rads and X before my 1-year diagnosis anniversary. I found my lump on New Year's Day. I hope 2018 is better for everyone. It seems like this time last year, the media was in an uproar about which celebrity would die next. Not which disaster would strike next.
Now before I get morose, I'll sign off.
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Everyone's posts have been very encouraging. Thank you all for sharing. I was diagnosed October 12, 2016. I had my mammogram exactly a year ago, September 21, 2016, but somehow fell through the cracks and was not called until 2weeks later. I was stage 1, no lymph nodes involved, I had my rounds of AC T with no radiation. I did not have a CP R though. My tumor had shrunk to 2mm but had 3 live cells so they gave me four rounds of Carbo and I started Xeloda post-mastectomy. I just finished my 8th round on September 19th so I'm done! WooooHoooo! I had no side effects until my fourth round which was my mouth, hands and feet. I was using the udder cream on my hands and feet before they were sore. I got a little over-confident so stopped using it and my hands and feet went south. I would recommend using the udder cream as a preventative means - before your hands and feet start acting up. Aloe works great too! I would also be sure to gargle with baking soda and salt water before you get a mouth sore. They took me off of Xeloda for three weeks before my breast reconstruction because my blood counts were too low and then I started taking 3500mg a day after surgery. My original dose was 3000mg a day. I see everyone else took a much lower dose than me. I'm guessing everything is pretty much fried in my body with the dosage I was getting. I'm just not sure why my dose was so high but I trust my doctor completely! I exercised throughout my chemo with daily walks - but have not done so in a month due to my feet. I will start again as soon as I can! Everything I have read says exercise is huge along with diet. A good read is "Radical Remission" and a great documentary is "What the Health" on Netflix. We hold a lot of power in our hands with diet and exercise! I feel in my heart that this is all behind me. The power of the mind is huge! We are what we believe! God's power is even greater! I pray for all of you to have a full recovery!
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Vivanne-Congrats on finishing up!! I'm totally with you on the diet and exercise aspects, and I'll look for that show on NetFlix, thanks! My last couple cycles I ate more carbs/nuts to keep the nausea at bay, so I've been back on a "good" diet these last couple weeks. Plus, it's been great to get back on the elliptical and walking post HFS. I have an apt with my onco and a nutrionist today. I'll pass the info on later this weekend. I've got lots of questions about diet and supplements for her! Take care, all. I'm keeping you in my thoughts and prayers. ✨🙏🏻✨.
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Questions for the people I think will have the best answers:
I'm scheduled to go on a breast cancer retreat in the middle of October. It was rescheduled from September after Hurricane Irma threatened to hit its location. At the original time, I would've been barely a week into X. Now I'm a full month into X and have sore feet, itchy hands, nausea and fatigue. I'm almost done with fills to my extenders and will be switching over to prepping for and starting rads about the same time the retreat is now scheduled for.
I really wanted to go before and was crushed when that d@mn hurricane ruined things. Now I'm thinking things like "It's a cross-country drive. With my parents. To be on the ocean after beach season. And too tired and achy and cranky to do anything anyways. To be around a bunch of strangers who happen to have breast cancer or loved ones with breast cancer ...."
In other words, I've turned into Debbie Downer. Or am I being realistic?
I'd love to go off X for a week. I get 2 off days out of 7 days and my side effects never decrease. It doesn't seem unreasonable to me to have 7 days off for a special trip. I'll have been on X for 7 weeks (also 7 cycles for me) by the time of the retreat. But I just can't imagine my BS agreeing.
Do I need a break from my reality? Hell, yeah. 2017 started with finding my tumor/lump on New Year's Day and the fun hasn't stopped since. From my beloved cat dying to my stupid ^&%$ sister's continued and successful efforts to destroy her liver and all those who care for her to a laundry list of things big and small ... I need a break. But a break I can't enjoy isn't much of a break. It's just more stress.
Input? Suggestions?
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FelineMum - I was off for a week while I was switching doses. It's my understanding that the chemo stays with you for at least that long. I would discuss it with your Ono. First ask about how long it's stays in system, then say clearly why you need the week off. And maybe you wouldn't need the full week off, you can take the pills with you and start up sa after 5 days off, as a kind of compromise. Just list out your reasons and discuss with onco.
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Can you take a break and not go to the Breast Cancer Retreat. It takes lots of energy (for me) to meet a bunch of new people. Have you asked yourself how will I have the best time as a short vacation. Maybe doing something with your parents, but not with a bunch of strangers.
Think of if you would be comfortable away from home. I'm on Xeloda 14 days on 7 days off. The worst days are day 13 and 14 on and the first 3 or 4 days off. So that 7 day break isn't as good as it sounds -- at least for me. I don't have the same side effects as you, though, so I cannot judge.
I usually put the pros and cons on separate lists and decide that way. That usually makes it more clear to me. Good Luck.
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Hmm.
Hanging_in_There, let me try to explain why taking a break just doesn't happen in my life right now. I scheduled nothing during the week the retreat was originally scheduled for. I found out on a Wednesday - three days before our scheduled departure date - that it was postponed. By that Friday, I had eight medical appointments scheduled for "retreat week" instead of my vacation. Eight. If I'm home, I can't say, "Sorry. Taking some me time. Try again next week." I simply have too much to do.
I like going places. In person, I can be quiet. But it doesn't mean I'm not comfortable around other people. And unfortunately, I tend to prefer strangers over my family. Cancer came along when my life was finally back in order after years of other health probs creating chaos and leaving me dependent on people who didn't want that responsibility but in the name of "family," did so anyways. Without ever letting me forget what a PITA it was for them. My plan for this year was to relocate out-of-state and get back into my personal "safety zone."
Why vacation with my parents? It's a family retreat. And part of me hoped that they would see that I'm not so horrible; so demanding; such a burden. I also wanted to see how strangers with similar circumstances would see them. To me, a week isn't a short vacation. But clearly, different people have different realities.
No offense, but we started X at roughly the same time. So, you either just finished your second cycle or are still on your second cycle's 7 days off? The old-timers do seem to say that SE clear up some during 7 days off.
I'll be talking to my BS this week, as well as the retreat's coordinator.
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FelineMum-
Taking a break from Xeloda is entirely possible. I'm 2 weeks on and 1 week off but was given an extra week off because of that beach trip I never took because of my dog. (By the way, Willow rejuvenated and last week was eating, running, and playing! Last night, however, I was up with her - diarrhea and throwing up. She seems okay now - as in she is sleeping and I'm still up.) By the end of the second week I was almost feeling okay - that was 14 days off. I never seem to get a break from the side effects. When I only have 7 days off I still have the side effects but do feel a little better.
Your question is what you want to do with your week break - if you get it. Do you want to spend it with your parents at a cancer retreat trying to prove to them how horrible cancer is? I wonder if you would emotionally have a worse time.
Vivianne - a lot of us started at 4,000 mg of Xeloda per day. I was just reduced to 3,000 mg because the side effects were too much. I was also cautioned to be prepared to not finish my 6 months - my hand/foot syndrome is getting worse and my platelet count is dropping. I will be lost without chemo - this is my 8th month with 3 to go and I feel like it is keeping metastasis at bay. At least I feel I am fighting. I am not looking forward to the sit and wait part of this cancer journey. I think my mind will be a mess.
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I definitely think this whole after treatment, waiting for those 5 most at risk years to pass, is a big oldmind game. My KC onco said it gets better as time goes on. I do admit it less now than even six months ago.
Btw, I'm going to be switching over to the TNBC Vaccine Trial? Blog as I start the process of TapImmune's folate receptor alpha vaccine trial. But I'll come back and visit regularly! I can't wait to celebrate your last days on this chemo with you!
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Warrior2016:
I'm so glad to hear that Willow is rallying! I've been wondering how she was. They say their love helps us stay healthier. Studies also have shown that we help them in similar ways.
You asked a good question. One I've been trying to ignore. I want to spend a week at the beach -- without my parents. And that's not an option right now. If I could prove I'm not who or what they think I am, well, I've spent 40-odd years trying off and on to do that. I'm happier when I'm not trying. One of the surprisingly good parts of my cancer journey has been the feedback I've received from people who don't know me well. I hear that I've got a positive attitude. That I ask good questions and that patients who take an interest in their own care usually do better. That I'm intelligent. That I look nice. That I treat people with respect.
Compliments had been so few and far in between for so long, I had no idea how to react at first. For example, my parents hate that I ask questions; that I'm so curious about people and how things work. And challenging authority when I disagree? A 42-year-old woman has no grounds to do so cuz real women have hubbies and kids - unlike me. I'm more of an overgrown child who's too fat to look anything but fat. I could continue, but I think I've said plenty.
My dream X break would be in late October when I'm moving. !!! I could do more, feel more in control of my move, hopefully have less to worry about (What time is it? Do I have food? Do I have my pills???). If I took off one active cycle, I'd have 9 days total off. That seems reasonable to me. I need to discuss this with my onc. I'm moving no matter what. I don't want to aggravate my HFS or completely wipe myself out.
Hanging_in_There:
I'm sorry my reply was harsh. I'm leaving it up because I think it does answer some questions, but please don't take it personally.
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Hi Everyone, If anyone has finished with their Xeloda treatments can you let me know how you felt once you were done? I've been on chemo for a year - with next to no side effects. Now, that I've finished my last round of Xeloda, almost a week ago, I have had every side effect which I dodged while on chemo! I am nauseated, dizzy, no appetite - I just feel rotten. I was taking Gabapentin too for nerve pain - which I realized was making things worse! I had horrible stomach issues and it was not helping my hands or feet. I stopped the Gabapentin yesterday and things are a little better but not much. I'll be calling my doctor tomorrow but I was just curious if anyone had anything similar. I have slept for almost a week and am still very tired. Maybe, I've been focused for so long to get through the chemo- that once I did get through it - I let my defenses down.
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Hey Vivienne! I just saw your post and had to reply - I too had next to no side effects on AC/T but once I was on Xeloda - whammo! All the side effects - nausea/fatigue/gut issues/the Big D was horrible. But within about two weeks of being off the drug, things started to get back to normal for me. The fatigue took about a month to overcome, but within 2 weeks the gut issues had resolved. HFS was gone fastest, bout a week. (Or at least that's my recollection from earlier this year - chemo brain was bad then so I look back at that time and question some of my recollections!)
Hopefully you'll start feeling better soon! ((ugs))
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Vivienne - since my main SE was HFS, I felt tons better after a week. Still some fatigue yet. Definitely clear what's going on with your dr!✨🙏🏻✨
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SuprSurvivr - May I ask how you dealt with your HFS while on X? That's my main SE too. I'm only 5 weeks into this, but I can't walk barefoot without pain (so I wear a lot of thick socks with shoes or hard soled slippers). The padding helps. I moisturize frequently, alternating between Udderly Smooth 20% Urea and Working Hands. My hands itch more and more, and I'm noticing that the areas which get used the most (like underside of the thumb, end of pointer finger) almost look leathery at times. Lotion still helps temporarily with the itching. Both hands and feet still feel smooth and soft - if anything, softer than normal, but all that lotion is probably doing that.
I'm hypersensitive to temperatures too. Getting out ice cubes or using hot water has become painful. I've started keeping cotton gloves in my car for when the sun heats up the steering wheel. Otherwise, I can't safely touch it. Winter could be unpleasant. I'm trying hard not to think of brushing snow and ice off of my car.
Anyone have tips? Suggestions?
Thanks.
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Hi, FelineMum - for HFS I avoided heat and friction in affected area. I used Udderly Smooth 20% urea AND Theraplex (Amazon for both) with socks/gloves each night and sometimes on weekends. I would also use cooling pads on my feet and sometimes soaked hands/feet in cool epsom water. Avoid hot showers, try not to walk around too much, keep off your feet as much as you can. I also took Vitamin D, B6, B12, and biotin. Avoid supplements with folate or folic acid (foods with ok) and milk (cheese and yogurt ok). Take care! Prayers for peace and healing.
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Life after Xeloda - I had my first after X dr apt. He said after three weeks I could go back to drinking green tea and taking multivitamin instead individual supplements.
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SuprSurvivr, congrats on finishing Xeloda! Lucky you getting to drink green tea again. I'm hoping Christmas morning I will be able to drink my green tea.
3,000 mg has definitely worked better for me. I still have the H/F syndrome, the nausea, and exhaustion but most other side effects are gone or greatly diminished. My lightheadiness is still present and doesn't go away on my week off. I think it's part of my constant exhaustion feeling and dizziness is a side effect of Xeloda. I wouldn't call it dizziness but I wasn't worried. My doctor has ordered a brain MRI for next week anyway, so that gives me a reason to worry now.
Hate this cancer!
Blessings to all. I hope you have a beautiful day full of peace and happiness and no side effects!
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Hi - my TN was discovered during my lumpectomy, therefore adjuvant chemo wasn't an option. I'm in the midst of Chemo now, but obviously knowing if PCR or not isn't possible. Is there anyone who has been put on Xeloda in this circumstance?
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VL22-I'm sorry you got that nasty surprise TNBC. Gosh dang cancer! I haven't heard of anyone with a case like yours. You may also want to ask on the Calling All TNBC forum. Prayers and peace to you! ✨🙏🏻✨
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VL22,
I have a friend in the exact same situation. Her triple negative was found during her mastectomy. She asked her MO about Xeloda. She (the MO) said Xeloda wasn't necessary since she was doing her heavy duty chemo post surgery. Xeloda is used as a "mop up" chemo for those of us who didn't have PCR from neoadjuvant chemo. Hope that helps.
Trish
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Thanks Trish - that makes me feel much better
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Glad to hear it helped, VL22. It's scary enough going through all of this without having to wonder if you're getting every treatment you need. Hope all goes well with your chemo. It's tough, but doable. You'll be surprised at how quickly the time goes by. Before you know, you'll be done. Good luck.
Trish
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