Calling all TNs
Comments
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Theresa987, welcome to my world. I had AC and did okay. One month into weekly Taxol, I broke out in full body hives. Then immediately after that ent away (5 days), my lupus rash flared up...or what they thought was my lupus rash. Every week after Taxol, the rash would flare up and then slowly fade before the next infusion. I had nightly low-grade fevers, but no infection. So they switched me to Abraxane for my last 4 infusions. It didn’t make any difference whatsoever. After Taxol, the rash cleared up. Then with radiation, it came back again, definitely the lupus. I have photos if you want to compare rashes.
VLH, our skin takes a beating while going through treatment. It took a while for my skin to get back to its pale normal. I read an article yesterday, let me go get it and link it here.
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The things I took away from this article were, “a breast-cancer patient who goes through chemo for three or four months loses 30 percent of her fitness, gains 10 pounds and ages the equivalent of 20 years”
And, “heart failure caused by a chemo drug like doxorubicin is treated differently than heart failure from a heart attack”. With that sentence, I updated the medical info in my phone to indicate I have been treated with ACT.
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I came here today to post that I just got back from my Oncology checkup and he says I’m doing great! I’m five years post diagnosis and had my mastectomy exactly five years ago today. I now have graduated to once a year checkups.
With that said, I’m so so so sad to hear about Annie! I can’t even describe what she meant to all of us here! She was so kind and made us all feel better! She will be missed so much! Rest In Peace our dear, sweet Annie! XOXOXOXOXO!!!
For those of you who are still in treatment, just hang in there!! I still pray for everyone here every night. I don’t post much anymore but I do check in often and pray!
Theresa, I did Abraxane instead of Taxol and did well. I did get pretty tired towards the end but I didn’t have any harsh side effects. Hope you do well!
Everyone, just take one day at a time and remember to laugh and smile! I lost mine (smile) for awhile, and I think I’ll always think about cancer, BUT I do think about the better things in life so muchmore than I used to! It will come! Just be patient! Love all of you!! XOXO!!
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Luvmydobies, Congratulations on 5 years! I just had my surgery a week ago and I love reading your post today. Thank you for the positivity. Also, thank you for the prayers for all. Take care!
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Thanks, LoveMyVizsla. Although it sounds like distressing news, I look forward to reading the article. Another thing I've noticed since treatment is that the nail on my big toe is so pale that I can barely discern the moon from the rest of the nail. I think that can be associated with anemia. My last blood tests showed my RBC is finally back in the low normal range, but I assume there's a lag time with nails.
YAY for you, Luvmydobies!
Lyn
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Hi Luv!! Good to see you here! So happy to read your update!! YAYYY!!
Hugs to you, and to all here!!
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I was diagnosed 8/2017 with triple negative. I went through 16 weeks of chemo AC, then taxol. Waited 4 weeks just had surgery on 1/25/2018. My question is, the post surgery pathology said that the chemo killed 90% of the tumor and the sentinel lymph nodes (4 were removed) were clear they showed no signs of cancer. The margins on the lumpectomy were clear as well - how successful does it sound that the chemo before surgery was a good thing. I am so ridden with anxiety, I just wish I could have a good day without this anxiety, fear, and depression. My Ki-67 was really high from the first biopsy they said 90% which scares me, but post surgery the Ki-67 was 5%.
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Thank you for posting this Washington Post article about the effects of chemo on the heart! As a triple negative who finished AC in December, I, too, am going to be sure my taking of this chemo is part of my medical record. And though I'm on Taxol and Carboplatin, I am trying to exercise daily. This is motivating. Thanks again.
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Hi all! I just read this article in the news today and wanted to share.
https://med.stanford.edu/news/all-news/2018/01/cancer-vaccine-eliminates-tumors-in-mice.html
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Thanks, Div,
It sure seems like targeted immunotherapy is the way to go.
My work is currently in palliative care as a Nurse Practitioner. A pt of mine is starting chemotherapy this morning- 36 year old woman with stage IV uterine CA- she just kept saying she just wants to be cancer free after this. Praying we can figure this all out sooner rather than later so people like her and all of us going forward can have better options than toxic chemotherapy. I read somewhere that immunotherapy was discovered some time ago but the engine (and money) was already moving down the chemotherapy track. UGH!
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Hello, TN friends! I’ve been away for a couple weeks. I’ve been working on pre-radiation tissue expansion so only heading to my medical center for a few minutes a week. It’s been a much needed break. Last expansion is on Friday and then I get ready to start 5 weeks of radiation. I think I’ve read thru the posts that I missed but there’s too many for me to respond individually. I send you all my best thoughts wherever you are on your journey!
On the most recent posts about heart disease & ACT, I saw a cardiologist before I started and he put me on meds in an effort to “protect” my heart. He said there are differing opinions on how effective this is but since there was very little downside, I agreed. My echo was unchanged after AC plus Taxol & Carboplatin. I’ll stay on the meds for this year and then likely stop unless something changes. My mother died of a heart attack pretty early in life, but she did smoke for some years. Perhaps part of his recommendation came due to my family history.
I also find the immunology study very encouraging!
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I had triple positive bc in 2010 and did FEC-D as well as 12 months of Herceptin. Then in 2015 I got triple negative bc in the other breast and did ACT. I could only do 3 doses of AC as that would bring me to my lifetime dose of A and the E in FEC.
I now have damage to the right side of my heart, it's not too bad at the moment, and my Dr says the right side isn't as serious as the left lol. I've also included my treatment in the emergency info on my phone.
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Trisha-Anne, did a heart scan find the damage? Did something prompt the scan?
Hi, DiV. I saw that article too. Hope you are doing well.
PKVille, your reports sound great! No nodes is awesome, and 5% is good too. Anything 20% and up is considered high. The worrying decreases as time goes by, but hasn’t gone away totally for me.
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Hi everyone - so I've been on the forum since Dec but today I'm joining you guys because they've changed my diagnosis.
I had biopsy & post lumpectomy pathology both showing weak ER+ and PR-/HER2-They sent out for Oncotype and that came back as ER negative (6.0 & their threshold is 6.5). It generated an Oncotype of 60 - eeek! - though the oncologist felt that result was impossible to interpret as Oncotype is only validated for ER+ tumors.
They're going to send my samples to more pathologists for re-examination (to help make a decision about tamoxifen/AI) but right now, given the discordance, they're going to treat me as as a triple neg.
I start dose dense AC+T on Feb 15.0 -
Welcome to the group. I do find it useful even though I don't post too often, but I find comfort in reading other's post. I have been waiting for my final pathology for almost 2 weeks and it's making me crazy!!!! My mind is going to horrifying places. I did have a clinical complete response meaning my drs couldn't feel anything left after treatment, but maybe they were wrong? The what ifs take over. I keep wondering if maybe there are some cells that were left or maybe a larger portion. Did anyone on this board have a double mastectomy with immediate reconstruction and then have radiation?? Thank you for any responses that come!!!
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Hi A4ggy,
I am over two years out from double mastectomy with immediate reconstruction and then had radiation. I am doing fine. My radiated breast is a little "tighter" - skin is a bit thinner and doesn't feel the same as the other breast but pretty close. So, I am happy overall. I had nipple sparing mastectomy and only have A cup implants, like I was before, so I feel OK with it all. Only problem is I have no feeling- as you know, a consequence of the mastectomy. OH WELL. I am ALIVE.
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A4ggy...I had a BMX followed by radiation. Chemo first, then my BMX was in October and they placed tissue expanders. I finished radiation two weeks ago so my radiated breast is still healing. The skin is looking less burned but still very tight over the expander. I start Xeloda tomorrow for 6 months then can finally have my exchange surgery. Prayers that your path report comes soon and is good news! I had a little bit of residual cancer after the chemo, so that's why my MO is having me take the Xeloda for six months, just a final clean-up.
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Thank you Batesburg & SoniaL for sharing your experiences. I am hoping path will come tomorrow. I know they aren’t planning on radiating my nodes as they were clear, but if there is any residual cancer, I know they will suggest Xeloda and I’m thinking radiation.
*did anyone take xeloda or have radiation if they had a PCr?
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Hi A4ggy,
I did NOT get a PCr, had a bit of residual left. So, that was reason for radiation for me. My MO suggested that having Xeloda wouldn't affect my recurrence risk much - that radiation was the "proven" next step- and, even though it wasn't a systemic approach to prevent recurrence, it was down the road a systemic approach given if I developed local recurrence it could spread beyond.
I had carboplatin in my mix of chemo and my MO felt it zapped any micro mets systemically. I agree. Gotta believe.
And, as Johns Hopkins says, most recurrence occurs within 2 years post diagnosis.....I'm past that.
I have been fighting the flu this weekend. It does scare me that my immune system is lagging because I got the flu. Then again, I am trying to convince myself that most of those who have gotten the flu this season aren't destined to develop cancer. My how the mind can work!!!
Janet
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I agree, you do just have to believe! I hope you feel better. The flu is horrible this year. I’m finding the mental part of this is very difficult. Any ache or pain my mind goes directly to cancer. It’s scary! But feel better😊
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Hello Everyone
I had to step away from the boards for a while.
Luvmydobies you are an inspiration. Your posts have helped me so much in this journey I did not choose.
Div so glad to hear from you. Your words about Annie are beautiful. She helped so many of us. She was my lifeline as well as others on this board when I was first dx'd.
For those still in treatment, just starting, or finishing up, hang onto us. We hold your hand virtually, though we may not always post. So many of us have been through these awful treatments. There is light at the end of the tunnel. As I'm learning, it may not be as bright as we hope, but it is light all the same.
I remember my first dx, 28 years ago, I thought my life had ended, I would never see my children grow etc, but I've lived to see so much more.
Batesburg my MO said the same thing, that Xeloda would cause a lot of discomfort, side effects, with not much gain. Especially with the chemo , plus radiation.
Welcome to the newbies. Ask, and if we don't know we will search, but usually there is someone among us that has had the experience. Additonally as has been mentioned, The chemo thread for your month is invaluable.
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Hi, all,
Valstim52 - my MO just flat out told me that I'll be taking Xeloda, period. I got little response from AC, but Taxol/Carboplatin is shrinking my tumor big time. I have to do radiation as she identified four lymph nodes that are involved, but my breast surgeon had trouble finding them two week ago, even though one had a marker in it. Question: depending upon my pathology at surgery in April, what questions should I ask following my six weeks of radiation concerning Xeloda. Our diagnoses are somewhat similar.
Thank you!
Paula
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Hi LMV, yes we did a couple of scans and ECG. I was feeling unwell, my legs and ankles were swelling drastically and I was getting breathless at times. My MUGAs during Herceptin were fine and didn't drop very much.
I knew the risk from doing chemo (twice!) and wasn't terribly surprised at the result, but it still sucks.
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Hello Everyone,
I joined a few threads suggested. They were helpful.
I completed my first round of FAC chemo 01/30-2/1. My results for HER2 did return as negative. I have two primaries in my left breast, however my diagnosis was discovered from a mass in my left lymph node.
The plan is to be aggressive due to this and family history.
I completed CT eye to thigh, PET, Bone scan, MRI breast and MRI brain to confirm findings before starting Chemo. I will have another PET after round 4. I start round 2 next week. The last few weeks were eventful, but I feel more motivated than ever to push through. I have experienced many emotions in a short amount of time. I was never really one to cry, but at first all it took was the wind to blow. But I believe tears help heal and build stregnth.
Everyone would say you have to fight this, but no one said how. I know fighting represents something different to each person, but now looking back over the past month I realized I am fighting. For me it is in getting up everyday, taking care of my well being, researching my dx, staying ahead of insurance billing, continuing to be involved in family activities, church, and every little thing from washing my face to going to work counts towards my fight. And I choose to fight.
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Hi Insideout2 - glad you have started treatment and you have a firm diagnosis. Isn’t it amazing how strong you can be when you have to be? I cried so much in the beginning - now it seems I don’t cry at all. I’m still sad and angry, but this crap is exhausting and I simply don’t have the tears. The hardest thing for me is that I think about having BC every single day, but I don’t want to talk to my loved ones about it all the time - sometimes even when I want to talk about it I stop myself. Just a weirdo feeling.
The best we can do is fight and truly appreciate every day. And of course look forward to years from now when we can look back and say “remember when...”
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Insideout2 - We are all with you in spirit as you move along the winding road of treatment. I like that you recognize that you are fighting by doing what you're doing. To me fighting the disease isn't restricted to doing Herculean feats of strength while on chemo, or discovering a revolutionary treatment on your own by doing research at the local library. In other words taking care of your health, self, family, and friends while facing down cancer treatment is heroic. You don't need to have some extraordinary story that they make into a movie starring Charlize Theron as you. You be you and that's hero enough.
A4ggy - I hope you get those pathology reports soon and that they are good news. This waiting period is mental torture. Did you do neoadjuvant chemo? If so did you get an MRI, ultrasound, or mammogram before surgery? If so what did those images tell you and your surgeon?
I'm in the waiting period myself for the results of my post-neoadj chemo MRI and Mammogram. I just had them yesterday and don't think I'll find anything out until Tuesday when I see my surgeon. My oncologist gave me physical exams every two weeks during chemo and says she believes the tumor is all gone, but never used the phrase "clinical complete response." I am so hopeful and nervous for the results of the imaging just to have something to hold on to until I get the final pathology after surgery. I'm almost afraid to hope for an ultimate pCR.
Does anyone that did neoadjuvant chemo have any advice about how close or different the post-chemo imaging compared to the final post-op pathology?
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AgathaNYC - fingers crossed for you!!
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Thanks everyone for your support.
I wish the best for everyone waiting for test results.
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Thanks everyone for your support.
I wish the best for everyone waiting for test results.
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Hi Paula
I would definitely ask, what is the 'goal' of the added xeloda? Is it to search out lurking cells? What will be the dose and what are some the side effects? Most of all how long? There is also a thread about xeloda with some that are taking it, after not having an optimum effect of AC/Taxol. Bottom line you have to be comfortable with the reasoning and weigh the added risks.
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