Calling all TNs
Comments
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AlabamaAustria and A4ggy, my MO indicated that Xeloda is "becoming" standard of care for women with residual TNBC after neo-adjuvant chemo. She strongly recommended I take it and felt that it lowered my odds of a recurrence. I have to admit I pretty much just trusted her advice and the info I read in the Japan study. But here lately I find myself re-reading my path reports and trying to understand more. Tonight I became familiar with RCB (Residual Cancer Burden) for the first time and learned that my RCB score was in the II category. I had 1.7mm residual primary tumor and 1 lymph node involved - maybe 2 because of the internal mammary node.
A recent study found that "the best 1o-year relapse-free survival rate among triple negative breast cancer patients, 86%, was seen in patients who achieved a complete response to treatment, versus 81% of the RCB-I group, 55% of the RCB-II group, and 23% of the RCB-III group". Since I would be in the RCB-II group, I am now glad that I have proceeded with the Xeloda. It's certainly no guarantee that there won't be a recurrence, but I'm willing to give it a try. Everyone is different though, and it's definitely a decision you have to feel good about. I'm just sharing this info about RCB in case you haven't read it before - I had not before tonight and my doctors never mentioned it.
AlabamaAustria, not sure about your question regarding starting Xeloda 6 months after treatment. I started mine about 2 weeks after I completed radiation.
Rdeesides...glad you are getting the second opinion, maybe Xeloda is a good option for you.
So far, so good for me on the Xeloda...I'm on an "off" week right now after my first cycle, but so far no side effects. I'm taking 3000mg daily - I have noticed that a lot of ladies start with 3500/4000 and then do have to lower the dose.
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Thank you SonaiL for your reply and information. I am actually going to go in tomorrow to see my MO to talk through all my questions regarding xeloda. Hoping to get some clarification. Glad Xeloda is going well for you so far! Hoping it continues
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Wow! Thank you SoniaL for the speedy reply and info! This is the first time I have heard of RCB. But I am not surprised. I was asking my doctor if just such a thing existed. Do you by chance have the link to that study? I would love to look into more.
Have you by chance seen the study out of German called: Prognostic Impact of Residual Disease After Neoadjuvant Chemotherapy in 648 Patients with Triple-negative Breast Cancer? published in AntiCancer Research. It also looks at prognosis for those of us who did not get a pCR. In case you want to look into this more. It made me a feel a little better, since it shows that there is good prognosis even if you do not have a pCR.
Thank you again for your reply!
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AlabamaAustria, sure thing - here is the link. Thanks also for sharing the German study, that was encouraging to read that a partial response can still have a good prognosis! It's so easy to get down when you read things about TNBC so I'm glad that so much work is being done in that area.
https://breastcancer-news.com/2017/03/02/study-say...A4ggy - hope your appointment went well. Did you make a decision on the Xeloda?
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Hi All, I've noticed that most of you had chemo or rads treatments before the mastectomy. Did your initial biopsies show that you were TN? My biopsies back in Nov showed DCIS ER+/PR+ with possibility of IDC. It wasn't until after the BMX that the full pathology report confirmed IDC (4.5mm) was TN, SN clear, clear margins, and Ki67 was 5. I meet with the MO on Tuesday to discuss the plan, as he will have the mammaprint/blueprint results. I'm concerned that this TN was missed and not treated before the BMX.
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Hi SoniaL, I met with my MO this am and honestly it was tough decision. I was as close to a CPR as you can get. She stated at another smaller hospital, they probably wouldn't have even found the microscopic amount. This tiny bit left is such a gray area, but it puts me in the RCB 1 group but as close to RCB O as you can get. How confusing?!! But I'm so thankful the AC/T worked so well. I decided to go ahead and give the Xeloda a try. There aren't any long term side effects and I don't want to regret anything.
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Maggie, - I had surgery first, then chemo. I am not sure how it is decided what comes first.
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My understanding of how it is decided if surgery first or chemo first is basedon size of tumor and suspected lymph node involvement. I had a 2 inch tumor with no nodes and my MO said she could go either way. I think anything 1 cm or smaller gets surgery first generally. At least, that is how I understand it.
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Maggie2 - I had surgery prior to chemo for TN. Now my TN tumor wasn’t found until lumpectomy for an ER+ tumor, but my docs said since it was just 1cm and no node involvement they would have suggested surgery first anyway. I know how so hard it is not to second guess and worry about every little thing, but your course of tratment is definitely good.
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Hi ladies,
My tumour is small <2cm but biopsy confirmed lymph node (stage IIB). In my case the medical team decided on Neo adjuvant chemo to capture any cancer cells that may have spread beyond the nodes. It appears to be standard protocol (in Australia) when node involvement is evident from the get go. I also read somewhere that with triple negative they like to know the chemo is working before they remove the tumours.
I started FEC-D regime this week. If all goes to plan, this will be followed by surgery and radiation.
It is encouraging to see so many so far down the track and doing well.
Good wishes to you all.0 -
In my case, my Team decided to do surgery first, because they weren’t sure my immune system would tolerate the chemo. And like i said before, she told me that only 40% of TN patients get a pCR from neoadjuvant chemo. That’s why we have surgery and rads.
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A4ggy...yes, that is great that you had such a good response to the chemo! But, I'm like you - want to be sure I've done all I can to limit recurrence. I hope you do well on the Xeloda. I'll start Cycle #2 on Sunday so we will see how it goes, hoping for another uneventful two weeks.
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Thanks All for your input. I'm still trying to accept that it's TN. The BS, PS, and MO all were saying it would be surgery and AI, given the original biopsies results.
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SoniaL...I hope it’s uneventful too! Have you been doing anything to help with side effects that might come? Cream or anything?
Maggie..I’m sorry that you have had a change in diagnosis. That is scary but I’m sure your doctors have a good plan. I had chemo first bcus my tumor was 4 cm, stage 2. They wanted to see how much it shrank and thank God it just about disappeared. But I have had coworkers who had surgery first. Good luck!
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Maggie - surgery 1st here too, I'm almost 5.5 yrs from dx. Don't dwell on it bc there is nothing you can do about it now. I struggled with that at first feeling I was the odd ball but accepted it bc it was in the past. Keep pushing along 😘
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@SoniaL, Thank you for posting the link to the RCB study. I appreciate it. That one does indeed makes things look grim. This part is so hard. I want to make sure I am informed, but if I get bad news and there is nothing I can do with it, then I ask myself if it was such a good idea. But... if I am in in RCBII, then it for sure makes me want to try Xeloda. Best from Vienna!
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A4ggy...I bought Udder Cream and started using it on feet and hands a week before I started the Xeloda. I lotion up every morning and before bed. I also replaced all the hand soaps in our house with ones that contain moisture/lotion. And, I make sure to lotion my hands every time I wash them. I'm hoping that will keep the hand-foot syndrome at bay.
Another sister here shared that when her hands got bad, she started putting on vinyl disposable gloves for tasks and when using the restroom so that she could just throw the glove away and not have to wash her hands so often. I've got gloves on hand in case I reach that point. Also, keep the Immodium and the Zofran in my bag at all times, just in case.
Cycle #2 for me starts Sunday...here's hoping for the best!
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Sonia, good luck with 2nd cycle! Thanks for the tips.
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My husband just found out his boss has died from cervical cancer. I've seen him cry once - when our son was sick as an infant and had to get surgery.
He just sat here and cried like I've never seen before. I know it's because of my diagnosis.
Sorry to be a downer, but aren't some days just bad? I hate cancer and I hate what is does to families.
Strength to us all and your always in my thoughts
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I’m sorry to hear about your husband’s boss. I hate cancer and some days just do suck. I had a suck day yesterday. It’s just scary and I become quite emotional when I think about my husband and kids. Thoughts and prayers...
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VL22 I can tell you, as the husband of a TNBC survivor, that the diagnosis is more terrifying to husbands than we necessarily let on. I can remember feeling like every ounce of blood in my body fell to my feet as the doctor shared the diagnosis with us. For a husband, well, at least for me, the feeling of helplessness was the worst thing.
So how about some good news? In a month my wife will hit the five years from diagnosis milestone! So there IS a light at the end of the tunnel!
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Great news, AL Husband!
I have a question. Did anyone ever tell you not to wear underwire bras after your surgery?
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Thanks all - and ALHusband, so great about your wife! So wonderful that there are so many good spouses out there
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Lovemyvizla-
Yes. I just saw the PA for my plastic surgeon today for a follow up appointment since my exchange surgery. She told me no underwire bras
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X3G3Y3, uuuuggghhh. Have you found a comfortable wire free one? I’m STILL going through PT for breast lymphedema and can’t find one that doesn’t bunch up on the ribs.
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LoveMyViszla - No. I was just yesterday given the green light to wear a non-sports bra. I’ve got a “bra-lette” to wear for now, but I plan to shop this weekend and get some help at Nordstroms. I was an A cup, pre-cancer. I only had a unilateral mastectomy and preferred to remain the same size, but the implant may have put my surgical breast at a B cup. I’m really just grateful that I’m cancer free, at least for now
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My PT doesn’t want me wearing sports bras either, because of the compression. I went to Nordy’s, but it was a smaller one and they didn’t have a big selection. I will try on the ones I ordered when they get here and go from there. Might have to drive to a bigger Nordstrom.
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dear Annie! (cocker_spaniel)
I was too occupied with my health and when i logged back into this website today, the first thing was, i looked for you. Read the message posted by your daughter that you are no more!
We have never met,just like most of us here. But your positive words which were always mixed with some humor will always be remembered! Thanks for being there for everyone..
To connect, we don't always have to physically meet.. this thread is a big example and you are too.
Rest In Peace Annie wherever you are!
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Hellooooooo out there! I think this is the longest I’ve seen this group go with no comments. Hope everyone is doing well and you’re out enjoying spring.
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Helloo!!! I know, its been quiet here. Here in Ohio, we are questioning if spring is coming.
And, those in northest- another nor easter??? Hang in everyone for better times ahead!FYI.....I am in training for a century bike ride for Peletonia in Columbus, OH in August. To raise money for cancer research. I started a cycling class - too cold to ride outdoors at this point. I wanted to share, just after one class- I feel better emotionally- just so interesting how exercise can improve the mind. Any others experience this?
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