Calling all TNs
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All,
Just got home from surgery yesterday and got pathology from surgeon today. Good news, no cancer found in lymph nodes. Bad news, “no response to presurgical therapy”. Basically, I had neoadjuvant chemo and my tumor didn’t shrink at all. Midway thru chemo I haf an MRI which indicated one of the two tumors had shrunk in half. So, now in the pathology report it was the same size as at the beginning. It had to either grow during Taxol or the first MRI was not correct regarding size.
Does anyone have any thoughts? I’m happy no cancer was found in lymph nodes but devastated that the tumors didn’t shrink at all.
Thx,
Rebekah
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Shopgal thanks for updating us. It’s good to hear that your mammo was clear. Good luck with the rest of the treatment. XX
Rebekah, so sorry to hear that chemo did not shrink the tumours. It’s understandable to be upset about that. Great news that there was no spread to nodes though. Now the surgery is done will you have rads? X
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Hi everyone,
just checking in. i've ended up posting more at the monthly chemo threads.
Valstim, i’m sorry about your friend’s diagnosis.
Rebekah, it must be frustrating to have gone through chemo and surgery and have those results.
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i'm scheduled for dose 11 of weekly taxol this coming tuesday. a lot has happened since i last read through this thread.
tested positive for BRCA2 mutation. which from what i've read, it's rare to have a TN Tumor for BRCA2 carriers. has anyone encountered the same situation?
was told likely i'll have a mastectomy despite neo-adjuvant chemo (frustrating to be honest after aaaall this) because of this discolored patch on my skin that never went away. had an allergic reaction to carboplatin on dose 9, doctor removed it for dose 10. Was told allergic reactions to carboplatin are rare and that they usually happen at the start of infusion not at the last half hour. allergic reaction was JUST visible on my sinus area. nothing else which they also found strange. had heart palpitations on paclitaxel during dose 10 but ecg and 2D echo came out normal. so my MO is monitoring extra closely during dose 11 and 12.
tumor feels much smaller... just probably not small enough to warrant a smaller surgery. i am overwhelmed with surgery but have calmed down compared to two weeks ago.
currently just enjoying the extended break from chemo. the extra days i get to have my taste buds back and fresh air from the province/suburbs.
it has been quite the rollercoaster ride and i am being stubborn and hoping for a miracle with tumor response. every single survivor that i see posting here gives so much hope.
have a great weekend everyone!
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Sorry to hear that Rebekah. On another thread, a woman who had pcr not long ago is right now having her second recurrence. And other ladies on her have no response and are years out without issues. It truly doesn’t make sense . Did your MO say anything about Xeloda
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Rebekah, I’m very sorry about your results. My MO was just talking to me this am about a quirky variance between my path results & my MRI’s. Scans just don’t seem to be as reliable as we’d like. I hope you get good advice and if it’s possible I’d think about getting a 2nd opinion on next steps. It looks like you did an aggressive treatment plan and more than one perspective might be helpful at this point. Good luck & pleasekeep us posted!
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Mkn86, I didn’t test positive for any genetic mutations so I haven’t looked into that area at all. I hope your next infusion goes smoothly. Allergic reactions are scary when we have enough to worry about! I hope you come to terms with whatever decision you make regarding surgery. It’s hard when you have a plan in your head and things change. Take care and let’s us know how you proceed.
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Hi, TN friends. I'm starting to feel the end of chemo jitters. Even with all the side effects and disruption to my life I felt like I was doing something to actively combat my cancer. Now that I only have one more meeing with my MO before I end chemo I'm realizing what comfort I got out of her examining me every 2 weeks and reassure me that my tumor was shrinking. I just want to fast-forward past surgery and get to the day I get the pathology report to see what is really going on in my breast. MRI's and ultrasounds aren't able to give them a clear view of how much the tumor invaded my pectoral muscle. I'm trying so hard to remind myself patience is a virtue ;-)
Rebekah - Of course you're disappointed that the tumors didn't shrink, especially if an MRI showed a 50% reduction. However I think it's really encouraging that your nodes were all clear. I'd hang on to the thought that could show the cancer cells weren't moving in big numbers out of your breast. Also, my MO likes to remind me that neoadjuvant chemo is really good at killing cancer cells that traveled out of the breast. Surgery and radiation can get rid of the original tumor - it's the travelers that they want to kill ASAP with chemo. What is your next step? Radiation?
mkn86 - I understand your concerns with surgery and disappointment you may not to get the lumpectomy you want. Maybe it can still happen? Surgery is my next step after my last 3 weekly Taxol and I'm very nervous. I am hoping for a lumpectomy, too, but because the tumor may be invading the chest muscle more than originally reported to me, it may not be possible. I hope you have an easy finish to chemo and are at peace with the type of surgery you end up getting.
Have a great week, everybody!
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Hi All, I was diagnosed just over a year ago and doing okay apart from some bone pain. Could be the after effects of Taxol although that finished in May 2017. Hopefully anyway. I'll talk to my Onc about it at my appt in March if it's still bothering me.
By the way, this is a great community- very supportive bunch on these boards!
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Welcome Fledg! I am also a victim of bone/muscle pain after chemo - I too believe it is Taxol related. To be honest, I hope it doesn’t last as long as yours has!
Glad to hear you are overall doing well a year out
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Hi Fledg and VL22...I have rib pain too on my opposite cancer side. It began at my 4th AC treatment and my tumor had already shrunk a lot, so my doctor wasn't worried. I finished my 4 DD AC and 4 DD Taxol and I still have rib pain. I mention it every time I go to the doctor and they check it out. In September I had a bone scan, a chest CT and full abdomen CT and MRIs, etc. My scans were all clear then, and my doctor isn't worried at all, so I'm working on trust. It's not easy. My rib pains seems to move spots though so my doctor said that's a good sign. I am hoping it goes away as time goes on. My surgery is Monday so my brain is all over the place! Hope everyone is well.
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A4ggy - mine also moves around. Sometimes it seems to linger in one spot and I start to panic, but then it moves. It is extremely stressful. I tell myself that worrying about it changes nothing, but then I obsess over it! I also keep my doctors informed about it.
Good luck with your surgery!!
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VL22 well now I have a back ache! Ugh...every ache and pain drives me nuts. My husband reminds me that I'm 40 so some aches and pains are normal. Thanks for the luck with surgery. Looking forward to it and also nervous!
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So I did some genetic testing, first the standard test for BRCA, and then I joined a study which is supposed to test for every known breast cancer mutation. There was nothing wrong with my genes... Seems like my cancer was just some bad luck, or maybe I exposed myself during chemistry lab. I have handled some nasty chemicals many years ago at university. Feels somewhat weird to be done with this and only have a short hairdo and some scars, while others eat anti hormones and stuff...
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just chiming in when I was on taxol I took Claritin starting the day before infusions. The regular one not the D. Worked wonders on my bone pain. It was recommend by my infusion nurses
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Hello All,
Have any of you heard of the 2014 movie, Decoding Annie Parker?
I went to a discussion last evening and met her - it is all about how we found the BRCA 1 gene mutation. I spoke with Annie after the showing of her movie and she said at the time, they did not know about TNBC and now they suspect she, her sister, and her Mom had TN.
ON another subject, any of you involved in a vaccine trial? If any of you know about it/are involved...can you point me to where I can find out more? Not sure if being almost 3 years out from diagnosis I could qualify, but, want to learn more!!!
Happy Thursday....love and strength to you all,
Janet
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Hi Janet,
Google: Clinicaltrials.gov, which lists all clinical trials, both actively recruiting and those planned. Enter triple negative breast cancer and/or triple negative breast cancer and vaccine, to get a list of available studies. If you then click on a particular study, it will give you a description as well as eligibility criteria. For active studies, it will also list the study sites. If you need help in navigating around clinicaltrials.gov, don't hesitate to PM me.
Carol
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Decided to finally post. I was diagnosed with triple negative breast cancer on 10//11/17, less than a month after turning 36. No family history. They were not able to test about nodes so clinically stage 2a. Ki 67- greater than 90%. Stage 3
Still in the middle of chemo but went for a second opinion today and am thrilled with my new oncologist. He is on board to work as a team as he put it. He also believes adding carboplatin to the Taxol I'm currently on is a wise thing to do.
I loved my previous place but still never felt at peace with certain parts. Gotta trust your instincts. Hope everyone is having a great night ❤
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Best of luck, GreenEyes. Having confidence on your doctors makes all the difference! Ive to go to bed, but wanted to sauna hello and glad you posted
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Welcome Greeneyes! This is a long haul, do being comfortable with your team is so important.
Hope chemo is being kind to yo
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Happy Friday Everyone! I am back with an update after being off the board for a few weeks. After much consideration, we decided that doing surgery and then chemo and radiation felt best to us. On Jan. 16th I had a lumpectomy, sentinel and one auxiliary node removal, 2nd mystery spot located and removed and chemo smart port placed. Everything went really well and recovery has been good, very minimal pain. At firs the port was the most uncomfortable but nothing advil couldn't handle a couple of times. No true pain meds needed. Port no longer a bother and right breast (surgical side) is now somewhat tender, I am guessing from being more active now. I have my post op on the 31st with my surgeon. I met with Oncologist yesterday and received good news on the pathology results. Margins are clear, lymph nodes had no cancer cells, tumor size remained at 1.3cm. I had them retest estrogen levels as well......still Triple Negative but that's ok. I will do 4 cycles of chemo every three weeks (Cytoxan and Taxotere). I do not need the Adrimyacin. And then 5-7 weeks of radiation M-F. Stage is 1
So incredibly thankful for my medical team from the Mammogram that captured it on the images, the radiologist who spotted it, my amazing surgeon and my Onc, as well as all of the friendly medical staff along the way. While the process is not over, I feel a huge sense of relief to have the tumor out and heading towards the next steps of treatment. Thank you to everyone on this board who has shared with me and encourage. You have all been awesome and much love and encouragement to everyone at all stages of treatment. I am now looking at doing the Cold Cap and going to look for that board to find pointers since the hospital doesn't provide it, I have to get it on my own.0 -
Jsan11, It was good to read your update and learn your positive news. Avoiding Adrimyacin is very good news. I hope the Cold Cap works out for you--I didn't try that but I did icing to help limit hand and foot issues and I think it helped a lot.
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Hi, GreenEyes - welcome to a very supportive group. Congratulations on finding an oncologist that you are comfortable teaming up with. I switched surgeons after a couple of months (but pre-surgery) because we just weren't a good team. Good luck with your treatments - may the side effects of chemo be gentle :-)
Jsan11 - that's great news on the clear margins and nodes after your lumpectomy, all with minimal pain. Yay! I'm finishing up neoadjuvant chemo and hoping that I will be able to get a lumpectomy. Good luck with continued healing and may chemo treat you well :-)
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I was diagnosed in December with cancer in my lymph node. I had an MRI guided biopsy on my left breast when I had my port placed in 01/11/18. I was informed I have 2 primaries on 1/23/18. ER-/PR- on both locations, but neither listed the HER2 status. I did ask about this and was told it was not in yet. The left breast is DCIS. The recommendation for me is to have chemo 1st then surgery. Chemo is to start the week of 01/29/18. I was told most African American women are TN. My mom was diagnosed with cancer around my age. I pulled out her certificate last week to research something else and found her first dx was for metastatic cancer. It is bothering me I can't recall all her details. It was 24 years ago and I was 21. I am logging everything for my daughter, sister, and nieces. I know everyone is different, but I think it is important to have as much information regarding my journey available to them.
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Hi Insideout2 - sorry to hear about your diagnosis, but glad you are moving along. Have you had genetic testing done? You seem like a good candidate.
I would get HER2 information from your DR - it is very important for the course your therapy will take and you should have all information.
Your mom’s records might not say she was TN, even if she was, since it was so long ago.
Good luck with h chemo starting this week!!!
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Hello, InsideOut2. I'm sorry you have to be here, but it's good you found these boards. It's a good place for support and information.
Sometimes the staining process for HER2 status can take longer so I'd follow up with your oncologist. It probably won't effect the kind of chemo you'll get initially but could later treatments.
Good luck with your first chemo session. If you haven't already done it I'd get on the thread "Starting Chemo January (or Feb) 2018". I found it so incredibly helpful to have an ongoing conversation with other women who going through the same thing at the same time. You'll likely find other women who have very similar diagnoses to yours so can talk about that, too.
If your insurance will approve it I would go for genetic testing. It would be a help not only for you but all the family members you are already helping my logging details. Even your male relatives.
I hope everything goes smoothly as you start your treatment. We're all with you in spirit.
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Hi, I’ve been a little AWOL just because I have been working through all the emotions of having NO respnse to neoadjuvant chemo. I will now have rads and my MO is investigating getting me in an immunotherapy clinical trial. MO doesn’t believe in Xeloda for some reason, but I will push for it.
The positive news is that because I had neoadjuvant I KNOW I didn’t reapond to chemo and can be proactive. MO says 50% chance of recurrence but I think that is just a way to say she has no idea what will happen.
Rebekah
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VL22 and AgathaNYC thank you.
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i’m sorry you have to experience that frustration rdeesides/rebekah. it is not easy and chemo isn’t a walk in the park.
I’m going through a somewhat similar frustration with my chemo too. all that work and still i need a mastectomy. while i recognize that chemo is primarily meant to be systemic treatment, it’s still devastating to have to mourn so many things as treatment progresses. sometimes i consider saying “go ahead add two or three more doses and see where we end up maybe it’ll be smaller by then” But of course that’s me being stubborn.
just wanted to let you know you’re not alone.
if there’s a way we can support you, even just by letting your frustrations out, we’re here.
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Rebekah - so sorry you are dealing with this. I find your MO’s estimation of 50% to be extremely high. I’m obviously not an expert, but I’ve looked at some clinical studies about this and nothing is that high. And most of the studies combine stages 2 and 3.
It must be so hard to cope with this disappointment. Have you considered getting a second opinion? It is never to late in the process to get a new set of eyes if you feel the need.
Thoughts are with you.
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