Calling all TNs
Comments
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Titan: Lol, I actually pictured you doing that! Works for me.
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Saw my Onc today. Yesterdays PET scan was good. Even the Lynph node that has been a bit of a worry is GONE! I go back in 6 mo. No scans unless something is bothering me. I will be having a drink with dinner tonight(Drs orders)
Navy
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Hi everyone! I am 50 years old, diagnosed in 2/2011 with 2.5 cm triple negative breast cancer (although 5% ER+) - MRI & ultrasound did not show any lymph involvement but radiologist thought two nodes looked a little enlarged (maybe from biopsy?) but during the 3 week waiting period in which my tumor went through a growth cycle and increased a bit in size, one of the nodes became palpable and hard - about 1 cm. I got started on neoadjuvant ECT (Adriamycin shortage here!) a few days later and have had 2 cycles so far. Tumor has shrunk - can't really say how much but clinical exam by oncologist after round one estimated it had gone from 2.6 x 2 to 2.1 x 1.5. It seems slightly smaller this last time but not as much as I'd like. I have pain in the tumor site and under my arm which I certainly hope is inflammation from the tumor dying! (I asked oncologist 2 weeks ago- - he thought node felt better - and the pain was from amino acids causing inflammation - of course, I'm worried about it all over again anyway! So that is my story - there are a lot of very encouraging profiles on here!!
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Hi Christina..glad to hear the chemo is working for you! That is good, good news! Oh yes..we all freak about things..but this is a good place to do so...we are with you and know what you are going through!
Hey MGB..been hearing some things about Lysine...what do you know about it?
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Christina - welcome, although I am sorry you are here.
Got mixed news on the PET scan. Good news - no evidence of metastatic disease. YAY. My doctor admitted she had been concerned about it, given how aggressive my tumors were. Bad news - the PET showed what appear to be three small nodes in the axilla still positive. It could be surgical changes, or it could be nodes the surgeon missed. I am going to have an ultrasound-guided biopsy on Thursday to see if we can confirm what is going on.
My doctor thinks that they were missed in the surgery - it happens. She is going to see if my BS wants to go back in and remove them. But she did say radiation would take care of them - they are small and not very dense. Given the recent studies on ALND, I'm inclined to not have more surgery and hit them with rads.
I'll do another PET in 3 months to confirm that they are gone. My doctor is now firmly in the more chemo camp - she said if I don't get the Avastin/chemo arm, she wants me to pull out and we'll come up with a game plan.
I'm relieved, but annoyed - not at anyone in particular, just at this disease. It always seems to be one more thing for me...my doctor is still hopeful, she keeps reminding me that she has patients who are fine and were in my shoes...
Sigh. Think I'm going to have some red wine tonight. Off to my vegetarian chili!
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Suze - GREAT news on the pet scan!!! (at least the part about no distant spread)
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Suze..that is good news...your onc will have a plan to take care of those freaking nodes...if you want I will jump on them on them and have my cats throw up on them.
Seriously though...your onc seems pretty positive about this...try to be too...it sucks..what we all want to hear is "all clear"..and when we don't hear that..we have to go through the mind set and gear up for another round.
I would love to hear my onc say..see you in 10 years..instead it is see you in 3 months...blah..but it is what it is.
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NavyMom: Great news!!! Congrats and a toast to you!!! Such a relief.
suze: So happy to hear your cancer hasn't metasticised. As for the other, if necessary I would do the rads and chemo and opt out of surgery-that's just me though. Sounds like your dr. has your best interests in mind and I am sure you will soon know what the plan is very soon.
BTW: I just got some really good news today that my friend who is a Stage 4 TN & Diabetic has finally found a chemo coctail that is working for her. Really great news and I wanted to share it with you all.
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Hi Christina: Sorry you have to be here but you found a great bunch of women who will help you through your best and your worse days. I hope your chemo coctail works and shrinks it into oblivion!!! BTW: Mine didn't completely go away, but when they finally did surgery, whatever was left was dead so I hope you have the same results!
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Suze: Good news, and yes, do rads on the underarm nodes, vs. surgery; it kills any cells that have wandered "outside" the nodes as well! None of my areas (L breast, L4 spine, R shoulder) where radiation was done have come back. Just wish I could rads my whole body !!
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NavyMom - I'm so sorry, I missed your great news!! Congrats on the clear PET! I know what a relief that is
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Titan - oh yes, come and stomp away! If only it were that easy, lol. I'm staying pretty upbeat. My doctor is great at giving me realistic news, but keeping my hopes up.
MBJ - my inclination is rads too. I can't be the only woman this has happened to, most don't get PET scans after surgery, and I know the radiation can knock it pretty well. I'm so happy to hear your friend has found a chemo cocktail that works - wishing her a looooong time NED.
TexasKaren - thank you for your insight. I'm glad to hear rads really worked for you, and I'm defiitely leaning in that direction. Hey, they have WBR, why not WBodyR, lol? Sigh, only in a dream world.0 -
Titan: Here is an extensive article on Lysine in combination with Vitamin C & Proline
http://www.drlam.com/articles/vitamin_C_therapy_in_cardiovascular_disease.asp?page=5
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MBJ- have you gone cluckin crazy also, like all the other hens on the OMG thread? You changed your avatar....0
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Heidi: Yep, cluckin' Looney, hahahahhahahhaha!!
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Suze: I'm really happy to hear PET was clear! That is what I needed to hear to end my evening. Just see what happens with the nodes, but it's really good the scan was negative.0
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Suze that really is great news.MBJ what was the chemo cocktail that finally worked for your friend. I too freak out with every pain I feel I keep think that with all the scans and tests and MRI they still missed something lol . A tad paranoid I might say. Have a meeting with the Onc tomorrow to make sure blood is good to go for round 2 on thursday.
hope all are having a great evening
Hugs Kymn
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MBJ - I love your new avatar.... I also liked the one with the mouth-watering pies you baked for Thanksgiving!
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congrats. Suze... breathe a little easier indeed.
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Sugar: Glamour indeed! What a great picture of you.
NavyMom: Congrats! Very happy for you.
Suze: Yes, good news on the PET. Onward...!
Re vitamin D, thought you ladies might be interested in an article in this morning's Globe & Mail (Canada's "national" newspaper). Interesting finding regarding vitamin D and body leanness in triple negative tumours. Looking forward to results from the human trials on Vitamin D. http://www.theglobeandmail.com/life/health/new-health/health-news/high-doses-of-vitamin-d-reduce-breast-cancers-in-mice/article1971805/
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Kymn: I am waiting to hear back from her as to which combination they gave her. Just so happy she is doing better!!
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Another good read ladies...
Titan- I love that cat idea! Headed out for a nice long walk. Nice out finally.
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Well ladies I'm busy packing for my trip to Washington. My sister and I fly to Baltimore/Washington tomorrow. Can't wait for the mini ivacation!
Luah, my new avatar is a scan of a photo that was taken last week at a gala fundraiser I attended for work. My company sponsored a corporate table and we had to get all gussied up. They were taking photos of all the attendees at the event.
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Sugar- Have a great time with your sister in DC! I will be watching my son's rugby game on Sat. and attending my Naturalist field trip on Sunday. I hope there are still some decent blossoms to see after all this wind and rain. I also hope the government gets its sh*t together so it doesn't have to close down tomorrow....0
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Sugar: Hoping you see some beautiful blooms for Spring and come back and share them with us!!
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Sugar - enjoy your trip! I hope the blossoms are still there.
Well, I'm still in a holding pattern. The nodes are level 2, to the right of my arm pit, under my pectoral muscle. My BS is consulting with tumor board tomorrow am to get recommendations. She isn't sure she can reach them without causing damage. My RO feels that he can do radiation effectively, but it is "outside the box" and will require careful planning. Everyone seems a little perplexed as this isn't common - catching this so soon after surgery. My RO is pretty upbeat, says it is better to know the devil that we are dealing with, and still sees me on a curative path, as does my MO. My BS is more, um, resigned. She pretty much thinks it is only a matter of time before it spreads. I'm glad she isn't my onc!
I'm still hanging on, trying to balance the optimism with acceptance. A part of me believes my lymph nodes are doing a bang up job, and that I will be on the good side of the stats. But I know my cancer seems to be particularly aggressive, and everyone is surprised I'm still Stage III.
I'll be lurking mostly, but will keep you guys updated. It is good to just read the chatter.0 -
Such a difficult time for you Suze. Hugs !!!!!!!!!!!
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Suze - I wanted you to know I'm thinking of you and send you a big (((HUG)))
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Suze: I am thinking about you also. I hope you can take a little break, enjoy the kids and just forget about this stuff for a while, (I know, easier said than done!)
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Have fun Sugar!
Suze..you lurk all you want..I lurk sometimes too..my kids accuse me of this all of the time on Facebook..I just pretend I don't see anything! If there is a bottle of alcohol in the background of a picture of them in college..well..don't see it!
Seriously Suze..it sounds like you have a good team working for you..My BS and ONC are great people but I sure wouldn't call them optimists...guess that is their job...they have probably seen too much..I read on here all the time that we are INDIVIDUALS..and not statistics..take that and run with it...
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((((Suze)))): Hang in there and try to stay positive and optimistic. I still say it sounds like you are in good hands and we are all individuals--no one can predict what will happen so give it the good fight and we all have your back!!! Come here as often as you need as this is the place where we all understand what you are going through.
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