Calling all TNs
Comments
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hanley50, I'm no expert but I would want to throw everything possible at TN while I have the opportunity, especially not having a pcr. Just my opinion.
I'm on #21/25 then 5 or 8 boosts depending on what my Rad Onc says.
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Meadow - thanks for the info on IMMU-132! My hospital is actually part of that trial so I will DEFINITELY be asking my MO about that!
hanley50 - I always knew rads were on the lineup for me, so I expected it. Always a shock when you think "I'm almost done..." and the docs are telling you "ONE more thing..."
I've read several studies that show less risk of recurrence for those who get chemo + rad as opposed to just chemo for those without pcr, but truly every case is unique and so much depends on node involvement, size of tumor, etc. I have always thought of rads as the "final mop up" of cancer cells that might be remaining. (that's actually how my MO explained rads and chemo to me)
And as ScotBird said above: "Am happy to do the rads as was told by oncologist that after rads my statistical chances of a recurrence will be lower (only a percent or two, but I'll take that). XX" AMEN! lol
Ag23 - Have you had any luck getting into that trial or with the insurance company? (sending positive thoughts your way!)
Lookingforward66 & LillieRose - Thank you both for HOPE!!
) N00bs like me sooo appreciate you taking the time to let us know there's a light at the end of this tunnel!! 
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Maryann,
I think you've gotten some great advice/thoughts above. I know it stinks to have another hurdle thrown at you when you think you're done (my own treatment has extended 6 months longer than originally anticipated, because I also did not get a pCR and chose to do 6 months of additional chemo--Xeloda--to reduce my risk of recurrence). And it is true that if you did surgery first, you wouldn't know that your tumor wasn't very responsive to the chemo, so they might not have had you doing radiation. But I think we should look at this knowledge (that the chemo wasn't totally effective on our tumors) as a blessing--it gives us the power & knowledge to do a little more to fight/prevent recurrence. We don't want to get to stage 4 if there's something we can do now to prevent it. It is absolutely true that some people get lucky and don't need a lot of treatment to stay cancer-free, like in Marsha's case above. We love to hear those stories! But Marsha's cancer may have been extremely sensitive to AC--those 2 treatments might have knocked out any stray cells, we'll never know exactly what happens in those cases. You could already be cancer-free at this point, but perhaps not. No way to be sure. The lack of pCR is definitely disappointing--it's at least an indication that the chemo didn't kill all of our cancer, and if you had a positive node (my nodes were negative, but I did have lymphovascular invasion, so probably we're in vaguely similar boats), I think there is a reason to at least consider the possibility that some cancer moved around our bodies). I think it makes sense to listen to your doctors (by all means, get a 2nd opinion if you are on the fence), and if they think the rads can help you, you should really think about it.
As far as radiation goes, of course everyone is different, but I was shocked at how easy it was for me. It was annoying to drive there every day, but as far as what happened to my skin, it wasn't bad AT ALL, no blisters or any open skin or anything like that. Just what looked like a sunburn in the last 5-10 days. Within a week or two, you couldn't even tell where I had gotten it, the skin feels exactly like normal and the redness disappeared. In my case, the anticipation was WAY worse than the reality. Of course, I was thrilled to finish it, because it's a pain in the neck to go everyday.
As much as I wanted to be done and not do extra chemo, I do feel so much safer having done this extra treatment. (I did 12 Taxol/Carbo, followed by 4 ACs, then lumpectomy, then 33 RADS, then started 8 three-week rounds of Xeloda. I'll be finished at the end of August, woohoo!!).
Good luck with your decision, I know this is a difficult time!!!
Tulips
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Hey guys, I see my Oncologist Monday, August 1st for my six month checkup. I always get so nervous around these visits. This is the first time I've gone six months without seeing him. I'm starting to notice every ache/pain, shortness of breath, etc. I'm thinking and of course hoping it's all anxiety because of the upcoming checkup, and asthma because of the heat/humidity here in NC. I haven't read every post lately but I still get nervous that I had surgery first and no radiation. They told me when I started treatment that they didn't recommend rads because of clear nodes but I still have the what if thinking going on! Ugh. Anyway, I know it doesn't do any good to fret and I can't go back and change the treatment plan so I have to just hope and pray for the best. I've got to start going and working out because I've gained some weight that I didn't need to and I haven't been eating well lately and that worries me a bit. Hopefully my Onc won't get onto me too much for gaining. Ugh, sorry for the rambling, but pleasesay a prayer for me for Monday. Love to you all! XOXOXO!!
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Luvmydobies....You have my prayer for a great visit on Monday. Please report back. ❤️XXO
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Luvie, I am sure you will get a good report, just try to relax, trust your treatment plan worked. We all get fearful for a time now and the, hoping you feel strong and confident soon.
Ally, yes, Notdoneyet's passing is so upsetting, hugs to you my dear friend.
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Luvmydobies we are in your pocket for a great visit. As a newbie I see you are 3 years dx, congrats and I pray I get there too.
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Sending waves Meadow and Cathytoo
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...delurking and chiming in to do the same! *BIG HUGS* to all! You're always on my mind, even though I'm rarely on the forums!
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Mammo and ultrasound scheduled for Aug. 1. In a bad way mentally/emotionally. I noticed some dried discharge on the nipple of the LX breast last weekend, and flipped. Breast surgeon not overly concerned, but will see me on Aug. 2. Still can't work (it's been over a year, now) because of ongoing, severe, chemo-related/induced/exacerbated SEs, including bilateral De Quervain's. Applied for SSDI again, and will need a lawyer this time around. *Sigh* Hope you wonderful folks are doing better than I am!!!
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Thanks for your post Marsha!
Luv, - think GOOD thoughts!
Hugs to all here,
from hot, sticky nyc =/ (I wish it would SNOW!
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another, yes, bring on the snow! Lol.
((((Val))))
For those who are interested, there is a thread started called IMMU-132, started by someone in the trial. Very interesting drug trial for TNBCERS. Hope reigns!
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Hey Gang,
Just dropping by to say hi.................as you all know, I get so overwhelmed with having to scroll through all the messages (wish they would fix that). I just wanted to say that as of April 2016, I am still clear........Thank God.I am available for anyone who might want/need to talk to someone in person who truly understands. If you want to chat please send me a personal message because I get those, but I don't scroll the pages.
My thoughts and prayers are with you all and I think of you all often.
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I forgot to add that the American Cancer Society was awesome to me when I first got diagnosed.
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Ok ladies, do you know how cruel you are to me. No more talk please about your hot summer sun and raised temperatures while I freeze my butt off here in New Zealand. All I can say is 'my time will come'. lol.
Trying to catch up with everyone is a nightmare so I will comment on the ones I remember, taking in to account my fuzzy old brain.
Meadow my love I am so sorry to hear about your oncologist passing away. That would have been devastating for you and his family and also having to bury his grandson. What an awful thing to happen. Also sad is the fact that we put all of our hope and trust in our oncologist that we love and respect and can talk to and now he is gone. Even though it won't be the same I really hope you get another onco that you can trust as much as him.
I was so very sad to read about NotDoneYet. So hard when we lose someone but nobody knows what is around the corner for any one of us, so make sure you make the most of every day. My sincere condolences to all of her family and friends.
TN Potato my cancer also was Stage 3a with cancer in four nodes so I know just where you are coming from. You will get through this and that black tunnel is not so very long. Even now, over four years later, chemo seems like a bad dream to me. I try to find something good in every day (like summer is just around the corner lol) and I laugh as much as I can.
Curly rads!! I have written this before in a previous post so I will touch briefly on it. Here in New Zealand we have a facility that is two hours away by car. It is like a big beautiful motel where you go on a Monday morning, your rads start on the Monday afternoon and you have rads every day until Friday. After rads on Friday you go home for the weekend and then back again on Monday. My room was large, all to my self as was every ones, and it was modern and extremely comfortable. I had a big ensuite bathroom and couldn't have asked for anything better. All our meals were cooked for us and there was all sorts of things to do there. Get your nails done, your hair done, a library, physiotherapy, a massage, a facial, several TV rooms, a music room and more, everything we could possibly want. We went shopping every day and also to the lake for lunch and to a casino. We do not have to pay for anything, it is all free even our petrol money. A shuttle came every half hour to take us to whatever our appointment time was and to the hospital which was five minutes away, we would have our rads which took about 10 mins from getting undressed to getting dressed again and then we would take the shuttle back. It was truly wonderful. As for rads, I had no problems whatsoever. I lathered on cream liberally every night and showered it off in the morning. I was there for five weeks and it was only on week four that I went a little pink. I had no tiredness, no sickness and absolutely no problems. The Lodge was called the Daffodil Lodge as daffodils in NZ represent cancer. There were all kinds of people there with all kinds of different cancers. I drove myself there each Monday and then drove home on Friday. Although I had no problems as did most of us there, there was one lady who burnt very badly and had to have bandages changed every day. She hadn't been using very much cream which was $5 for a big pot and so it was very unpleasant for her. So my advice for anyone having rads is to lather, lather, lather that cream on but not before you go for rads or you will fry. There are several of these Lodges dotted around NZ and we are extremely lucky to have them. I'm so sorry you had such a rotten time with your radiation, it certainly isn't something you want to remember in a hurry but I think the norm is for an easier time with it than chemo.
LUV thinking of you with your onco appointment and in your pocket for good news. xxxx
Stupidboob so glad to hear from you and glad you are doing well.
Ally is anything happening with your surrogate. I really, really hope so. Still keeping my fingers crossed for you my love. xxxx
AL you are so right but I still believe that God does only give us what we can bear because we did do this and got through it and came out the other end of that dark tunnel. Thinking about the treatment is more than most of us can bear, at least it was for me because I have never felt so frightened in all my life, but somehow and with some help from above I found some courage that I didn't know I had and we all seem to be able to get through it.
Love to everyone I have missed and thinking of you all. xxxoooxxx
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As usual I have written a bloody book!!!!
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Cocker, - Always so good to hear from you! I hope that you are healing and feel better and better!
Stay warm! (Hard to believe I'm saying that today!
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Another, my leg is slowly healing. It's been eight weeks now but the gashes are getting smaller bit by bit. So glad I can sit at my computer again without it hurting like mad. I will keep warm and you make sure you keep cool (if you can). xxooxx
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Hello Cocker Span,
I have just read your post about how you did your radiotherapy when you were going through treatment. I was so impressed with what you said about how a hotel was laid on and that you stayed their for the five days of treatment, meals laid on etc. I think we have a long way to go in the UK to get to those standards!!
I do hope all is well with you.
There are so many names on the TNs now that I cannot keep up with them. Most of the ones I knew, way back when, have disappeared, but yours and Meadows stand out in my mind.
Wishing you both all the very best. Is there any news on Titan?
Sylvia xxx.
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cocker sending you all the warmth from Phila with 90-100 degree temps.
Sylvia I think Titan posted just after page 1000 of this thread.
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Hello Cocker, sending you warmth from racing towards the sun North Carolina. Glad you leg is on this side of healing.
Val
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Cocker, - I am glad that you are improving, - i hope the healing hurries up!
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Cocker - Thank you so much!
May the winter pass quickly and summer 'spring' upon you! (And here's raising a virtual glass to a complete healing of your leg!)blamoms - "We are going to get through this ladies. Life is tough but so are we" AMEN!!
Luvmydobies - Sending positive thoughts and prayers your way for Monday!
adarkadaptedi - Hang in there and good luck with the SSDI! My sister is on SSDI and it took my mother several tries until she was approved/enrolled. Don't give up! A lawyer is an excellent resource to help!
Hugs to all you wonderful people! xxxx
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Hi All,
Today is my three year cancerversary. I was stage 2b with lymph node involvement. After neoadjuvant therapy, I did not have a pCR. There was a small residual cancer in two lymph nodes (my residual cancer burden was RCB-I). I'm still NED today so there is hope for us non-pCR gals.
This thread was such a support for me during treatment; it makes me happy to be able to post some hopeful news. I was so sure that I was "a goner" in the beginning.
Wishing everyone a wonderful day.
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Simplelife4 how wonderful. Thanks for the inspiration
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Thanks for update Simplelife!! Wishing you continued good health for many decades to come!
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Simplelife...thanks so much for your post. CONGRATULATIONS on reaching three years. Keep going‼️
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Hi everyone! Yes, stupidboob, ACS was great to me too when I was first diagnosed.
I'm encouraged by all the stories but admit I'm anxious, now that I've just finished treatment.
My tumor was very aggressive...with spread to my lymph nodes. I had clear margins after surgery, did AC&T and rads with a boost but is that enough? I guess that's it for now with TN...I wonder if everything isgone? Trying not to stress but I find myself agonizing over every headache, memory lapse or exacerbation of my lymphedema.
Thanks for a safe space to vent...love you all! We are warriors!
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I'm with you Shari. I will have my last rad thursday, and then it's Bye. But I will have lingering thoughts. Will try to move on.
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Thanks for the thoughts and prayers! My Oncologist said he thinks I'm doing well. I don't have any new aches or worsening pains since I saw him last. He gave me a thorough checkup and said things looked and felt good. So I see him again in six months. Next Friday will be three years since finishing chemo for me. Hang in there everyone! That's all we can do! Simple, congrats on three years! XOXO!!
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Yay, Valstim52! Congrats on finishing🎉. Just responded to another message you posted. You inspire me to take one day at a time and live life to the fullest! Blessings to you
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