Calling all TNs
Comments
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I spend way too much time on these boards and I am trying to wean my way off but then I miss you all and it's so hard to catch up and then here I am again, lol!
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Welcome back Laurajane! I'm glad everything is going well for you! I'm glad you have the will power to stay away from these boards! LOL!
kelben - please keep us posted on your results. I'm keeping my fingers crossed that you have a local recurrence that can be zapped with chemo. By the way, I had a bilateral mastectomy & recon and had rads after that. No issues other than looking tan on one side. Good luck!!!
I need to get out and exercise. I found these red velvet cookies at the grocery store. OMG! They are so yummy. I am going to have to stay away from them!!!! I need to reduce my sugar intake, but it's hard!!!!! Do you guys think that fruit is okay???
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Thanks so much MBJ and Heidi and Lovely...and all you great women. It's so nice to have others really understand the worry of the waits and those two selves - the logical one and the one that wants to keep you up all night imagining the worst. I picure the angel/devil on each shoulder, like an old Looney Tunes or Tom & Jerry cartoon! I wanna duct tape the devil's mouth
I am going to ask for some Ativan. So far, I've made it through the last two months since first dx with one Valium, so I can't shut that scary voice up as well as I might with some pharmaceutical assistance.
Does Ativan take a while to build up in your system and provide relief?
LauraJane: You don't know me, but I was following your posts when I was waiting for a dx and in the very first days after. I've missed your positive posts and am glad you peeked in to say hi. I hope you're feeling good and get that all clear asap.
Snowing like crazy (again!) today, so I may not get my MRI tonight at 6pm after all. *grrr* For exercise and frustration relief, I should install a punching bag - like boxers use - double benefit, right?
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Michelle- Ativan works right away. I always take 2 when I need it. It helps me fall asleep, but doesn't keep me asleep all night. It works at least long enough to get a few hours good sleep which is probably more than your getting right now! Good thoughts to you on your MRI!!!
Tiffany
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So glad today's convo is more upbeat. I tried the coconut ice over the weekend it was good ladies considering it was low-fat. A very nice treat you don't have to feel guility about. Thanks MBJ!
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MBJ - I noticed that when I was diagnosed mine was always around 97.2 or so and it is still the same. Not sure why but my Onc said that all TN's usually run low temperatures.
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Fighter: Not sure if its low fat, but my goodness, it's yummy!
JenC: I am not surprised! My Dr. says all cancer patients have low temps.
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Breast Cancer Controversy Laid To Rest: Analyzing Sentinel Lymph Node For Further Tiny Tumors Has Little Prognostic Value
Laying to rest sixty years of controversy in breast cancer treatment, researchers said there was minimal prognostic or survival rate value in analysing sentinel lymph node tissue for occult micrometastases, the tiny tumors sometimes found deep within tissue initially assessed as free of cancer.
You can read how the team, led by physician-researcher Dr Donald Weaver, from the University of Vermont (UVM) and Vermont Cancer Center in Burlington, Vermont, in the US, conducted the largest study ever undertaken in this area in a 19 January online first issue of the New England Journal of Medicine, NEJM.
The controversy over whether or not pathologists should do a deeper exam than the standard one of testing patients' tissue samples started in the late 1940s when an influential breast cancer study publication reported that routine analysis of lymph nodes in breast cancer patients did not go far enough to find all the cancer that might be present.
Weaver, who is also professor of pathology at UVM, told the press that:
"The take-home message for women is that the micrometastases are so small, they have very little impact on outcome - only 1.2 percent at five years."
"Pathologists shouldn't continue to look for micrometastases when the initial evaluation is negative and oncologists shouldn't treat patients any differently or change therapy exclusively based on micrometastases," he urged.
He said the debate about whether breast cancer patients whose lymph nodes at first test negative for disease but who have occult metastases are at higher risk of recurrence, and thus should have more aggressive treatment, has been going on for years.
"It's gratifying to finally have solid evidence that puts to rest the concern that micrometastasis substantially increases the risk of cancer recurrence or decreases overall survival in breast cancer patients whose sentinel nodes were initially negative for cancer," he added.
Weaver and his team conducted a randomized cohort study as part of the National Surgical Adjuvant Breast and Bowel Project (NSABP) Trial B-32, a trial led by UVM's Dr David Krag, and which recently reported findings in The Lancet Oncology.
In that report, Krag and colleagues said that doing a biopsy of the sentinel lymph node achieves the same cancer survival and recurrence control as the traditional surgical removal of the whole lymph node in patients whose initial sentinel lymph node biopsy result was negative for cancer.
In that broader trial, Krag and colleagues randomly assigned 5,611 patients with no clinical evidence of metastatic disease in the armpit (axillary) region to undergo either sentinel-lymph-node biopsy plus axillary dissection or just sentinel-lymph-node biopsy.
3,887 of those participants were enrolled in Weaver's study, where the results showed that occult metastases were found in 15.9 per cent of patients whose initial sentinel node biopsy tested negative for cancer.The results also showed that the overall 5-year survival rates among patients with detected and undetectable occult metastases were 94.6 and 95.8 per cent respectively, revealing a small difference of 1.2 per cent.Lymph Node Cancer - the right treatment for you at CTCA CancerCenter.com - CancerCenter.com
Metastatic Breast Cancer - Learn About a Chemo Pill That May Help Treat Advanced Breast Cancer. - www.OralChemotherapyTreatment.com
Treatment for C.O.P.D - C.O.P.D Stem Cell Treatment $15k Performed by Specialist Surgeons - AngelesHealth.com/copd
The researchers concluded that:
"These data do not indicate a clinical benefit of additional evaluation, including immunohistochemical analysis, of initially negative sentinel nodes in patients with breast cancer."
For the study, the pathologists on the team evaluated all samples to find all metastases bigger than 2.0 mm by taking tissue slices of the sentinel lymph nodes every 2 mm, embedding them in blocks of paraffin wax, and then submitting them for analysis and detection.
All negative samples were then sent to UVM for further analysis where they sliced more finely, at 0.5 mm intervals.
"This evaluation protocol was designed to detect virtually all occult metastases larger than 1 mm and to randomly detect a proportion of occult metastases smaller than 1 mm that were present in the initially negative sentinel lymph node blocks," wrote the authors.
Funds from the National Cancer Institute Department of Health and Human Services, PHS, and Vermont Cancer Center, helped pay for the study.
"Effect of Occult Metastases on Survival in Node-Negative Breast Cancer."
Donald L. Weaver, Takamaru Ashikaga, David N. Krag, Joan M. Skelly, Stewart J. Anderson, Seth P. Harlow, Thomas B. Julian, Eleftherios P. Mamounas, and Norman Wolmark.
NEJM, published online 19 Jan 2011.
DOI:10.1056/NEJMoa1008108
Additional source: University of Vermont (press release, 19 Jan 2011).
Written by: Catharine Paddock, PhD
Copyright: Medical News Today -
Heidi-Too - thanks for the article! I'd be interested in knowing if the same was true after neo-adjuvant, i.e. after my surgery, if all I have left is micro metastases, should the nodes be considered clear...
Just hanging around, glad to see our spirits are up
. I'm going to see my 4th grader's first band concert tonight, yay! He plays the trumpet. I may be tired, stiff and sore, but I can't wait. He's so proud, and so am I!
Hope everyone has a good evening! -
MBJ - my temp always runs around 96.0 - 96-4. I always ask the question that if my temp is not normal to begin with how come I dont have a high fever at 100 instead of 102. I really do not get an answer, but I like to ask anyway
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HeidiToo: Thank you so much for this article. My BS at the Norris Cancer Research Hospital agrees with this approach and I so wish more dr's would take note!
Beetle: Good question!
Ladies: For some reason, today I have just been crying and crying for absolutely no reason. Feeling very alone today. Nothing has happened, nothing has changed yet all I can do is cry. Maybe it's because a friend is Stage 4 with mets? I saw her on Monday and she is doing great now compared to Novemeber and December when she was in and out of the hospital. Maybe it's just a delayed reaction? I don't know. Just feeling very small and very sad. I also have been feeling lately like I am posting into outerspace and no one is really hearing or listening or better yet, feeling as if I am being "ignored" here. If I have said or done anything to offend or hurt anyone here, please forgive me as I have not been myself now for months.
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thanks for posting this, Heidi - this is was exactly my situation. Initially my 2 sentinel nodes were declared clear. Then more extensive pathology revealed that each had a very small micromet. They called me on Christmas Eve after my surgery to tell me this and it totally destroyed me - I was thinking I was free and clear. Instead I had to go back for and axillary node dissection a week later. Luckily the rest of the nodes were fine.But this officially put me out of stage I and into IIa.
It's nice to see micromets seem to be rather insignificant. But - why would that be? I mean, even if they're micromets and teeny, they're still cancer that is aggressive enough to leave the original tumor, right, and wouldn't that make for a poorer prognonosis?
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MBJ - I am so sorry you are having such a rough time. I can relate to feeling ignored, sometimes it seems we post and the thread just moves so fast that it gets lost. But I know personally I am always happy to read your posts, and your avatar always makes me smile, you look so happy! I too have a friend with Stage IV TN, and I know I haven't processed it yet. So that is weighing on you I'm sure. I don't have any advice really, just know you aren't alone, and I often have days where I am a mess. More than good days lately. Hugs to you.
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MBJ - so sorry you have the blues today. Your posts are important especially to the girls who are trying to eat healthier. I am not one of them so I don't usually respond. I am sure all of us on this site appreciate you and all your research. Please have a better day. Bye - have to go to a meeting.
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MBJ - I will PM my phone number to you. Please call if you want to. I have really missed you. I think you are an inspiration to us all. I wish I had the discipline that you do. Sometimes it's good to cry and I've got the shoulder to cry on if you want to.
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MBJ
Just know that you are so respected on this site. I really adore you!
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Heidi, thanks for that article. I'm a bit confused though. What's occult, and what's the extra testing?
My path came back with the result, done - it wasn't like there was additional testing, first clear then not. I had SNB, and 4 nodes lit up (with dye). Those were analyzed in the lab the result was 2 clear, 1 with ITCs and one with so many ITCs they classifed them together as micromets. I opted for a ALND, rest were clear.
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TifJ: thanks so much! Funny, I read your stats and Fighter's and we're all basically the same. In fact you and Fighter were dx the same day, and I followed you by exactly 3 months. Weird. Wish we could've all met at a great restaurant or bumped into each other at a bar instead.
Heidi: Love that article and my onc told me about that a couple of weeks ago. My node was clear in the frozen section done in the OR the day of my last surgery and then I was devastated at my follow-up appt. when the BS said I had individual tumor cells in it after all. I was crying and he's saying "its not bad - they're smaller than micromets, we don't even know for sure what it means"
Of course, he was trying to be reassuring but at the time I kept thinking I was screwed and he was wearing rose colored glasses and blowing smoke up my a$$ to stop my crying.
Then I did some research and saw my onc who said what this article says -- so that's great news, but I still find it odd - like Minxie said. I try not to think about it.
MBJ: Girl, you are so important to me!!! You have been incredibly supportive to me over the last couple of months, even when I wasn't posting - you didn't know me then *wink*. I take a lot of strength from you and your advice. I wish I could fly to CA right now and we could go out for some fun. I could use some fun and good company like yours.
Well, the second wave of snowmaggedon hasn't started yet so I'm off in a few minutes to my lovely brain MRI - I know, par-tay, right?! I just wanna get this sh*t over with. (that's me trying to be all tough
).Over the river and through the snow...to nuclear meds we go....
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MBJ: I just have to say you have kept me going on these threads...You have so much information and have given me such confidence to be a go getter...I love reading your post and you make me smile! I'm sorry your having a rough day...I do understand the tears...I wonder if we will always have these kinds of day...pm me anytime if you just need to vent or cry...im here for you!!!!
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sorry--having a personal meltdown day. think maybe i should take a break.
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MBJ - Although I do not post very often I really do like reading your posts and what you have to say. I am really sorry that you are having the blues today, but I completely understand them. There are just days that I feel like crying for just no reason at all that I can explain. I think it is because we are still dealing with so much and sometimes it just gets to be way to much to deal with. I hope that you feel better soon.
Big cyber Hug just for you.
Beetle
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MBJ- for you:
Edited to say: You are Welcome!
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MBJ- Even if I don't post often, when I see that you posted something, I always go see what you have to say. You have a way of saying exacly what I think but have trouble putting in to words. You always say the right thing to cheer or comfort someone who has a bad day (or a good one for that matter) and that's what this thread is all about: TO SUPPORT EACH OTHER THROUGH THIS. And you my dear do a great job at it................. Hope you feel better soon.
Hugs
Isabelle
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MBJ:
WE LOVE YOU - HONEST TO GOD LOVE YOU! Don't you dare go anywhere, especially if you are feeling down or a little blue - this is where you need to be, here with us. We all may be bowls of jelly at times, but we are your bowls of jelly! Got that??????
Love,
Linda
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MBJ - sorry you are having a bad day. That seems to come with the territory. I do not follow the board as closely as others, but I have not noticed anything you have done to upset anyone. Sometimes it is hard to respond to all the posts. I would not read anything into it.
Kittycat - Fruit is okay - even good - according to everything I have read. Some say to emphasize veggies over fruit, but I think the main concerns is processed sugar, not the sugar found in fruits.
To whomever is asking about ativan - I love it, as I have said previously. However, if sleep is a problem and you dont want to use px, try melatonin. I have used it for years. At the height of my cancer anxiety (the month or two after diagnosis) it was not enough to get me to sleep, but now that I have settled down some, it is working again. It is also suppose to have an anti cancer benefit, but I think that is only at dosages that are quite a bit higher than what I take to sleep. The sublingual melatonin works better than the pills that you swallow, imo.
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Love you MJB...! I always read your posts...and everyone else's...sometimes it is hard to keep up..and get back with everyone...but I think we are all reading (lurking)..just sometimes don't have time to respond...
On another note..did you heard that Jimmy Buffet fell off a stage and is in the hospital
Linda..love the jelly..that is so true...
Remember ladies (as if you could forget)..we are all in different times and stages of cancer here...but emotionally...well we are all jelly! I have always thought that the emotional aspects of breast cancer are alot harder on us than the physical aspects.
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MBJ - your posts are so nice to read. Plus, you are our resident expert in nutrition and stuff like that. Please keep posting...I'd miss you too much if you didn't. I also like your posts on the Hair, Hair, Hair thread. How else could I keep up on the latest, greatest hair products. I hope you're feeling sunnier tomorrow. ((((((MBJ))))))))
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MBJ: I agree with the others above. You are one I look for to post and read... one of the more regulars on here. I feel you are a very important part of the forum and without you... well, it'd be like working a puzzle and coming up with one piece missing. But if you feel you need to take a break, and only you really know how you feel, then I know we would all be supportive of you in that... we'd miss you horribly and would think of you often... but the important thing is that you feel good about yourself. I'm also hoping you're just having a down period and will be feeling sunnier soon.
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MBJ - Please don't wean off of us, as we love reading your posts. We are all benefitting from your time that you spend here, so it is a sort of service you and all others are doing here.
I am going for a diagnostic mammo and ultrasound on Feb. 2nd. They did say in the MRI that it seems to be all Benign findings.
Does anyone have any information on the C-15 and the CEA tumor marker tests? I had the baseline done before I started chemo and they were really very low numbers within the range. I recently had them done again, after finishing chemo, and they are still within range, still very low numbers, however higher than before. One nurse had previously told me not to pay attention to these tests at all as they are highly unreliable. Another nurse today told me that she will keep a close watch on that, if it continues to rise. Freaked me out. she also said that maybe I didn't drink enough water before the test. Duh!!! noone told me to drink water, which might make a difference to the test. Now I have to wait a month to get the test again.
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MBJ - Honey, I feel so selfish. You are awesome and we are so sorry to have ignored your posts. I really look forward to reading all your posts. I promise to say something next time, maybe I have just been in my own sick world. So sorry! You have been my strength here as your posts helps me a whole lot. And you are so very kind, that is the one thing I had noticed about you, so sweet. I honestly love you so very much. Your photo avatar is very angelic too.
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