Calling all TNs
Comments
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Had my last chemo today! YAY!!! Second consult with RO yesterday and will meet with him again on March 18 for a planning session. I can't wait to have functioning taste buds again. And I'm anxious to get my brain back. I know it will take time, but the clock has now started. Life is good!
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Congratulations Mary! What an excellent accomplishment, make sure you celebrate this weekend!
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To the person questioning "red rash" after TC treatment.
I went through 4 rounds of TC, 3 weeks apart. A few days after my first infusion, I noticed a lump/knot at the site of infusion. Within a few hours the lump turned red rash like along the vein. I feared that I had some infection. However, it turned out to be the result of Taxotere that leaked through the vein. That occurred in 10/2013 and I still have a scar over that vein and when I touch it, my thumb and index finger become numb.
I also questioned whether I was getting the "best" choice of chemo. My MO reassured me that recent studies have shown TC to be as effective as ACT. He also has been around long enough to see the heart problems and bone marrow side effects of Adriamycin. Therefore, with my age being 60, he was more conservative by choosing TC.
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MaryFox yep it will take a time to get back onto your feet but you have made it yay. Each day will get better and better and it's a great feeling. Yep I get the occasional "what if" but I soon banish that away because I refuse to go there. I want to live and do things that I have never done before while I have the chance. So congratulations on your last chemo. If you have to have radiation, well that was a breeze for me. No side effects whatsoever and no tiredness. On your way up now girl, so you get going.
AL Husband I see my doc's every three months for five year's. I have requested no blood tests because as I said above I just don't want to go there. If it comes back I'll deal with it then but in the meantime I am well covered with plenty of instant help should I need it. I don't want scans or MRI's either. My body will tell me if something is wrong. I feel great and just want to get on with living now the treatment is behind me and the sun is shining so it's a great day to be alive.
adi339 trust that your oncologist has decided on the correct treatment with your mum. They will monitor her closely and be on to it should anything arise. with regards to the redness on her breast keep a watch on her temperature and if it should go up call her onco or whip to emergency just to be on the safe side. tekwriter is right she should have faith and trust in her onco and if she has doubts a second opinion can always be sought. Special hugs to her and you.
Simplelife4 every little bit of exercise will help but take it slowly, there is no rush. You go girl.
Tital didn't see you amongst the crowds at Ironman today. I kept looking but couldn't see you. Plus Taupo put on a beautiful day for the Ironmen. It is just perfect for them. We also have some American's on the commentators panel. They showed some magnificent photo shots of Taupo it looked gorgeous.
Have a great day ladies thinking of you all and sending hugs.
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Damn, now I'm all confused. I am starting on ACT a week from today. I'd love to avoid the heart issues linked to A but I thought that TC was "not as good" as AC.
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adi339 - I am also on 4 rounds of TC (just finished the second)- had similar issues with rash developing along the vein where they stuck my iv. Also had lots of pain around the area they did my lumpectomy after the first infusion. This is the first time I have heard of anyone else having these symptoms - thanks for sharing ladies. I was given the option of ACT but was super concerned about all the heart issues related to that therapy and not keen on 32 visits and port. I was told TC was effective for triple negative (by 2 oncs) - and it seemed like the better alternative for me. Good luck with your Mom - I found the worst of chemo side effects started 3 days after each infusion. Make sure she drinks lots of water!
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Onefineday,
I have the same profile as you - 3.1 cm tumor, one positive node. I had BMX, but was still advised to get rads, which I did.
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Meg, when does the carboplatin come in? In my opinion, if your team is recommending ACT plus carboplatin, they must be planning a more aggressive approach. I think Adriamycin is weighed for benefits vs risk, and in you, they obviously do not feel it is a risk to your heart. I'm not sure I would change the course of things or question it now, because they are adding in another cocktail to your treatment. To me that means that they want to treat you in a very specific fashion and have really tailored this treatment for you. I would ask them when your chemo starts, what enhanced benefit will you get from carboplatin and what will the ACT accomplish for you. I think it's great that they are pulling out all the stops on you and tailoring a very specific aggressive plan. You don't want to leave any stone unturned. I'm sure they have assessed that the benefit of Adriamycin and weighted it against any potential negative effects.
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ALHusband- I went every 3 months for 2 years, then every 4 months for another year and at 3 years I moved to every 6 months.
adi339- I had a rash on my face and upper chest for 2-3 days after my first TC. I didn't get it again on the other 3 treatments.
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Inspired, actually I brought up the addition of the carboplatin, because of a study in Dec. 2013. It had good results before surgery so I asked her if she gave it after surgery and she said a few people had asked about it and she had added it.
Sigh, I'm getting so confused now.
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Hi to all, I have question (s). I had rt. mastectomy last week, the drain came out yesterday, my papers from chemo doc say I am Stage IIA, T2, pNO(1+),MO, G3. I know that Stage IIA could be worse, and was just wondering what the other numbers mean. Everyone here seems very well versed on all this stuff.
I start chemo March 18 with triple-drug therapy
Thanks!
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Here is the detailed TNM staging system. To utilize this, you scroll down until you find the abbreviations that match your abbreviations.
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According to the chart, this is what I see:
G3 - I don't see that anywhere in the list, and have never
seen a G before. I'm not sure what that is.T2: Tumor > 20 mm but less than or equal to 50 mm in greatest dimension
(Tumor is greater than 2.0 cm but less than or equal to 5.0 cm)
M0: No clinical or radiographic evidence of distant metastases
PN0: No regional lymph node metastasis identified histologically
However with the (+1) behind this on your form, it might mean that you have 1+ node involved.
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Dolce, thanks so much for the link, just what I was looking for. I did have 2 nodes with microscopic amounts. What a journey this is, like a roller-coaster. Maybe that is why I feel queasy most of the time!
Mary
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Al...I was 3 years out before I "graduated" to every 6 months...I still see the bs and onc every 6 months...wondering what will happen at 5 years out..will let you know... I am good with everything six months...I also have a mammo once per year plus a d3 test whenever I request it...that's all..no blood work, no scans....unless I request them...and I haven't.
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MaryFox....congrats on finishing your chemo!!
Wishing everyone a wonderful weekend.
Kay
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Meg, that's wonderful that your Onc is open-minded to suggestions. I'm sure together you and her have formulated an excellent game plan. If the carboplatin is of extra value to the TNBC girls about to go through treatment, please post the link of the information you researched. The information you know may do a lot to help others as well!
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Congratulations MaryFox,
Finishing chemo is huge! Celebrate!
Hugs,
Peggy
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Inspired,
Thanks again for the helpful information!
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Mary,
I guess G3 refers to grade 3. It means how aggressive the tumor cells are (but they generally respond better to chemo).
My mom has a similar diagnosis as yours except her nodes are negative. She is having TC only and she has gone through the first infusion.
Wish you all the best. We are always here to support you.
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Thanks to tekwriter, Curlyq1974, Inspired, momof2doxies, Cocker_Spaniel, artsmart and TifJ for your advice! (wow that's a long list!)
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http://www.medscape.com/viewarticle/817820
Here is one reference to the addition of carboplatin to the chemo regimin for TN women neoadjuvantly. I already had my surgery, but I brought it up with my MO about adding it adjuvantly and she said there is no study for it, but it makes sense to her that if it worked before surgery, why wouldnt it work after? So I am having it added. It's an older chemo drug; a friend of mine had it over 20 years ago when she was treated (stage 4 with mets).
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Grade 3. That makes sense, and I know it's aggressive. Guess we will have to be aggressive right back at it!
Best wishes, thanks, Mary
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Wow, I just read that information from that link. That is amazing Meg, what an improvement to the pCR stats!
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I started going every 6 months at the 2 year mark. Tomorrow I meet with BS and Onc for 3 year follow up (from diagnosis). I am so excited, but nervous too. The past couple of weeks I have had alot of headaches and just feel tired. Their is alot of crud going around so not sure if I just have a touch of it or what is going on. Just pray for me.
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ksmathews - I know the fear you have right now. I had about a non-stop headache for 3 weeks in December over the holidays and I don't normally get headaches. My mind went everywhere where yours is right now too. I secretly stressed through the entire holiday season without my family knowing. My 6-month onc appt was in January so I figured I would just wait to bring it up til then. But the headaches stopped at about the 3-week mark. No problems since so I didn't even bring it up to my onc. Sending prayers your way that it goes away for your anyday.
Hugs,
Kathy
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I am done with my chemo treatment as of 1/10/14 and waiting for my exchange surgery on April 9th.
I'm afraid of it coming back...so what do I do? I try to find on the internet all the success stories of women with TNBC and don't find that many. After reading, it seems me to a dark place and I get so depressed. I'm always promising myself that I will not read the horror stories, but I find that I still do it. I'm just angry because initially Pathology said I had DCIS, ER/PR positive and Her2 negative. Then after the mastectomy I also had IDC triple negative. I am so insecure, but my MO says my prognosis is excellent, those were her words. But I am still afraid. I am 59 years old and happily married for the past 5 years. I don't act like an old woman, but my body feels it. In fact, I feel mentally young. I am finally happy in my life and now I have to worry about whether I will be around for the next 5 years. Fortunately, I am taking Lexapro for depression because of this, but sometimes in my mind I am so afraid.
I don't find too many success stories and that makes me anxious. I'm sorry I am being a Debbie Downer, but I am so afraid.
Maybe I should just stay off the internet reading about TNBC and just stay here.
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Shorfi...don't think about it too much. You may not be finding much success stories for TNBC because a lot of the survivors have just moved on and are living happy lives. Give the internet a break and just live for a while. I am 38 and I have a husband and a 5 year old daughter. I know you think about the what if sometimes but just try to live. Don't spend your disease free time worrying. Good luck.
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Shorfi - Give yourself time to conquer the what-if fears. They are very natural, especially when finishing treatment. I noticed that you've fought breast cancer twice now, so no wonder you're scared. Una2008 gave you good advice. Stay off google. There are always bad reports to read on the internet. I'm over three years out from treatment and it took a while to get where I am now. I realized I was getting over that when I planned a major vacation for 9 months down the road. Then it hit me that I was planning for the future, something that I hadn't done in a while. That gave me hope for my future. Having said that, new aches and pains always make me nervous. You'll figure out your new normal eventually. Be kind to yourself and take it one day at a time.
Kathy
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ksmatthews, I'll be thinking of you. Hitting the three year mark is a big deal. May your next checkup be all clear. When I your appointment so we can be in your pocket when you go?
I'm almost 3 weeks post op from a LX and ALND. I've been having pain from the ALND, mostly hypersensitivity of the skin on the inside of my arm and possibly a little cording. I have an appointments with my BS, MO, and RO all Wednesday (March 5). I have tons of questions.
Today (March 3) is TNBC Awareness Day. A year ago, I had never heard of TNBC. What a difference a year makes. Now, it's what I think about most.
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