Calling all TNs
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jen, - good update, - thanks for letting us know!
diV, - thinking of you and wishing you improvement and relief!!
Be well wishes to all here!
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Paula, thanks for the offer. I have a contact number for the trial here too, so I can call her!
Div, I am hoping you are feeling ok both physically and emotionally.
JenJen, good news.
Thinking of you all and hoping everyone is doing well.
R
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DiV, I know you had ACT chemo before. Just wondering about the taxotere. Can they not use taxol again?
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I am upset this morning, after getting a call from my breast surgeon about the DMX results from 4/27. After five months of chemo, I have a residual 2 cm cancer tumor in breast, margins clear. When looking at my images pre-mastectomy, she's said nodes looked good. In fact, after axillary node dissection, 2/14 still malignant. I have an appointment next week with my MO who will put me in touch with my RO for 26-30 rads, then follow with Xeloda and maybe trial for Keytruda. I know I'm still stage III, but I am frightened, just now, about the long-term outlook. I know so many of you are dealing with even more than this. I'm just sad to get this news this morning. Left breast, prophylatic, was benign as expected.
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Div, I hope the rads & chemo go smoothly. I’m sorry that you have to go thru this again.
Paula, I’m sorry about the rough news from your BS. It’s very disappointing to go thru aggressive treatment and still end up with residual. Good luck starting rads and please keep us posted as you finalize the rest of your plan.
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oh Paula - I’m sorry. You must be so disappointed and afraid. I’ve read through all of these TN threads going back years and one lady mentioned that before neoadjuvant chemo, you just didn’t know if adjuvant chemo worked or not. Her point was that so many women go on and live long lives, but obviously they all didn’t get pcr.
I didn’t know my cancer was TN until after surgery so I was devastated that I couldn’t get chemo first. But I think both scenarios can be full of angst. I hate this disease!
It’s great that you will get Xeloda and hopefully a trial.
Hugs.
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Hello everyone,
I am just popping in to say hello and to wish all of you on the TNs the very best as you go through your cancer treatment. It is so good that this thread is very active and that newly diagnosed patients are getting lots of support and information. I was thinking of Titan today who started this thread on May 2nd 2010, eight years ago today. I do hope she is still well and enjoying life and that she may still be viewing if not posting. I shall never forget you, Titan.
To all of you, never give up and keep looking forward. I am nearly thirteen years since diagnosis and if I can do so can you.
Thinking of you all.
Fond thoughts.
Sylvia
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Paula, my MO told me that only 40%get a pCR, or maybe it was the other way around, 40% don’t get it. Either way, you are not alone and surgery and rads should do the trick.
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I'm catching up on the thread, after a week away. I'm reading everyone's news with interest and well wishes.
Yesterday I had a follow-up with my MO 30 days after last injection on the tap immune trial. There won't be any results for awhile. But it was the first I'd seen my MO since osteoporosis diagnosis. I've been weighing whether to do Prolia--I'm worried about the risk of necrosis in the jaw. She said she'd only had one patient, in 16 years of prescribing Prolia, who had developed jaw necrosis. Still, she said, this is a very bad side effect and not to be dismissed.
One piece of news to me is that Prolia has some benefit for prevention of recurrence and for helping to slow down bone cancer. This is more so with the hormone positive cancers but has some application to TNs, as well. She said they always prescribe it for patients who have mets to the bone. She gave me a scientific explanation of how it helps with bone cancer (something to do with osteoclasts?) but my brain damaged brain couldn't absorb the info. This tips me a little more to the prolia side though I'm still worried about the necrosis.
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Hi All!
I'm new here. My name is Kristina and I finished chemo on March 30th and had a bilateral mastectomy on April 24th. I got good news that I had a complete pathological response. I'm kind of in that phase now of "what now?" all I've known for the last four months has been chemo and endless appointments. It's a strange feeling and I was so happy a few days ago, but not I feel like I am already worried about it coming back. I'm sure it's a normal state of mind for everyone, just looking for some advice from TN women who have been through this.
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Kristina,
Congrats to you on your pCR! I finished chemo March 19 and had BMX April 11. I also had a pCR. I just need to get through reconstruction, and I'm done. No radiation. No oral chemo. I'm equally excited and terrified. The past six months have been a whirlwind. Not sure what "getting back to normal" even means.
I don't think the fear of recurrence will ever go away, but we can't let it control our daily lives. Cancer has robbed us of so much these past few months. I refuse to let it continue to control me now. Choose joy. For me, I'll control what I can. I need to try to lose 15 more pounds. I'll go for daily walks, eat as healthy as possible, avoid sugar, take a few supplements, drink pomegranate juice, green tea, write in my gratitude journal, pray and enjoy my husband and three children. And remember to breathe.
My MO wouldn't give me stats for recurrence. She just said that a pCR lowered the odds, which are in our favor.Love and blessings to you.
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Cocooncat - hi to you and sorry you’re here. So great your tumor is responding to chemo! Yes, googling is the worst we can do, but hard not to do it. The worst for me was when I was first coming here and I’d be on a threadreading and someone would be just diagnosed and someone would say “at least you’re not TN” ouch!
But when you look at the legitimate research our prognosis is good. We do all we can and just keep on living. I so look forward to the day when we can believe it was just a glitch!
Good luck to you.
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CocoonCat,
Welcome. This could very well just be a glitch, the odds are in your favor. I still keep thinking they made a mistake, even though clearly they didn't. So awesome that the AC seems to be working. It's so hard not to google, I think we are all probably guilty of it. <sigh>.
Rebekah
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Hi everyone,
So many positive posts here and I feel that urge to "like" them. Lol. This is such a supportive forum. I was having a particularly bad case of the Mondays and my worries were taking over but I popped in here and read a bit and I feel better. The odds are in our favor and we do have to choose joy. Thank you everyone for these wise words!
I was very guilty of googling, and sometimes still get sucked in, but there isn't anything I haven't read it seems! I try to stay away.
For anyone on Xeloda, did you have elevated liver enzymes?
Have a great day everyone
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A4ggy,
I had elevated liver enzymes all through AC and Taxol. My MO kept asking me if I was drinking alcohol, which I wasn't. ;-) I just started Xeloda and am worried about them getting elevated again, but I haven't even finished one round yet. Are you having that problem?
R
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Rdeesides, I am. They weren’t elevated during ACT but after surgery I was taking tylenol and they went up and now are up again. My bilirubin is higher too but still within normal. They said if still high next month,I will take time off to see if lower
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Which cycle are you on? Gah all these blood tests are so frustrating.
R
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I just finished my 3rd round. They are frustrating and anxiety provoking.
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Yeah, from what I hear 3rd round is when a lot of people need dose reduction. I will keep you posted if my numbers go up.
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what dose are you on? I’m on 3500
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4300 mg/day. Kind of high. I am 5'6" and 155 pounds. I'm wondering how long I will make it at this dose.
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For the elevated liver enzymes, milk thistle works to help reduce them. Works on humans, and dogs!
CocconCat, sorry you had need to join us. But, if you’re going to google, this site is a good source, as is Mayo Clinic.
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Thank you for the milk thistle recommendation. I'll try it and add it to my list of vitamins
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A4ggy, you’re welcome, hope it helps.
Just saw this article:
Common osteoporosis drug may help battle TN. https://www.medicalnewstoday.com/articles/321715.php
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rdeesides - I meet with my MO tomorrow and will learn whether I'm doing radiation AND Xeloda or, hopefully, radiation before Xeloda. I'm bigger than you - 5' 10" and 180; I'm curious about my dose. I lost 25 lbs two years ago and need to lose that much again to be in the healthy zone for my age (64). I'm watching the Xeloda board as well.
Thanks to all for the good TNBC info here!
Paula
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PaulaAtlantaGA, I haven't heard of many people doing radiation AND Xeloda at the same time. Although, I know it does happen occasionally. If your doctor prescribes that for you, let me know his reasoning.
I am at the end of week 1 and have had almost zero side effects and am not taking any anti-nausea meds or anything. I am wondering if my neuropathy is slightly worse, but it's kind of hard to tell. I have tried to limit my walking (no long walks last weekend as per my norm). If I can get past cycle 3 with no issues then I will gradually start resuming more activity. This is just my plan... doctor has not said anything.
I am putting tons of lotion (with urea) and icing the feet if I walk any distance at all. I work from home, so am able to not wear shoes or just flip flops 90% of the time.
ON a side note, I am having a very very hard time with anxiety. Almost all I can think about is mets. I know it's not going to help one way or the other to worry about it, but I'm beside myself with worry. I started taking a nightly Ativan again, but am wondering what else I should do to manage. I am worried all the stress isn't healthy. Do most of you take an anti-depressant? I have asked for one, but they referred me to a psychiatrist and I couldn't get an appointment for three months (apparently there are a lack of mental health professionals in my area), so I just gave up because it seemed silly. Ugh.
R
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Rebekah - I think I’m doing a great job with anxiety about mets, but then I think I have a “symptom “ and it is all I can think about. And I tend to keep it to myself, because I dont feel friends/family can “get” it or I’m being tiresome. This past week I’ve had pain in my jaw and tingling in my face and scalp. I do have seasonal allergies and I am on Tamoxifen (I had that ER+ tumor) but of course my first thought is brain mets. It is a struggle. I also find myself being less concerned with my appearance. I don’t look like a hobo or don’t shower 😝but I’m not really putting much thought into my clothes when I go out and haven’t bought anything new. My new hair is a true mess, but I just let it be.
I loved Ativan, but I stopped taking it because I was “needing” it.
I’m a big runner and as I get back in the groove I do find it relaxes me and helps me sleep better. The busier I am the better.
There is a Gilda Radner house near me and I hear they have great programs. I’m not much of a joiner, but if I could get out of my comfort zone and get involved it would probably help.
Cocooncat - yes, I hate cancer.
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Rebekah,
I'm sorry to hear about the anxiety. I have it too. I am back to work so that helps, but it's in my mind all the time. It stinks. I really try to stay focused on only today and no more. Sometimes I am good at it and sometimes not. I also pray a lot and try to let my faith guide me. I have started meditating too. I bought the year of calm.com app and I started going to mediation but I can't always make it as my kids schedules are so busy. I also walk a lot right now. I can't do anything else yet, so walking is what I do. Makes me feel like I have a little more control. However, as I'm writing this I'm eating a jelly bean and knowI shouldn't be because sugar feeds cancer. And by 1 jelly bean, I mean like 30. Oops. But it seems like everything feeds cancer? I don't know...you're not alone!
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A4ggy - I was recently on the John Hopkins Cancer Center forum where people can ask questions and they are answered by a breast cancer expert. Someone asked about sugar feeding cancer and she responded that this is a myth with no scientific support. I understand playing it safe and sugar is not good for us, but I don’t think you should stress about those jelly beans
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CocoonCat - thanks for responding to me. I should try some of those tactics too. Journaling, meditation and exercise are all good things to do anyway. I live in California and I don't think a psychiatrist is required to prescribe antidepressants but I just think the dumb health care system I have been using must have that as a requirement. I just switched MOs so I will ask him his thoughts on coping. I hate cancer too.
A4ggy - It does give me some comfort that others are anxious too, though I am sorry that we are all having anxiety. I think exercising is probably something I need to do more of, as I know it does help even during normal times.
VL22 - I have heard the same thing. Thank goodness, because I honestly think it's almost impossible to completely avoid sugar. It's everywhere. I am working hard and eating more fruits and vegetables, and exercising, and limiting alcohol. Those are all big things and I hop they help.
R
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