Calling all TNs
Comments
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Suze35 good call for the DOC. I wanted to say that but I didnt want to start a RIOT on the boards. Yes, diet, exercise, vitamins and any other safe alternative you can find do it.
Dr. Oz show yesterday was about alternative options and how it will soon be re-shaping medicine.
Take care girlie!
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Suze35 - thank you so much for your post. You don't scare me - you inspire me and I wish I could be more of your mindset! I know having a positive attitude is important and I need to get there! And, like you, I think that adjuvant chemo after neo will add extra benefit. I know that I need to pull it together and not let myself get overwhelmed by thinking about what might happen and instead focus on where I am now.
I am so very happy for you that your PET was clear and that you are back in treatment and working on getting rid of it for good!
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Fighter - I'm a big believer in the diet/exercise/TN connection, so I have been doing what is basically a diabetic diet, very low fat (<20%), no white carbs, and almost vegetarian. I also exercise every day, right now for 30 minutes but I'm working on that. I agree, we need to do these things in concert with medical treatments. My MO is VERY encouraging with this, as she has TN patients who she feels have benefitted greatly - and I plan to be one!
Teka - I've had numerous spam messages myself. The first one I messaged back a very simple *&%* Off. How people can take advantage of women like this is disgraceful! I've put the other usernames on ignore, and the mods are aware of it I believe.
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dlcw - I have my fair share of doom and gloom, that's for sure! And a full-time positive attitude doesn't cure cancer, as my therapist likes to say - so don't be hard on yourself for being so concerned. I was a wreck myself waiting for surgery, it is such a stressful time. It is all we can do to just get through this with our sanity intact. You are doing great!!
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Teka,
Don't delete the message and make the Mods aware of it. They are trying to put a stop to these predatory spammers. I think I read that on the OMG thread (which is always good for a few laughs... great gals).
In fact, a search in here for elisasmith47 gave me no results! Banned, perhaps?
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I got the spam from an annajohnson and a susansmith....I just ignored them....
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dlcw, suze and others: Just want to say that we all have to be very careful trying to apply study conclusions to our own situation. Case in point: a study showed that outcomes were signficantly better for women who initiated chemo within 12 weeks of BC surgery. Does this mean that if you initiate at 13 weeks you are doomed? No, it's just that the study was designed with 12 weeks as a dividing line, comparing two groups of women on either side. It could be that the critical point was 16 weeks... kwim?
Similarly, I have read studies showing that women with a complete pCR do better than women without. But these studies are often deliberately designed to split women along those lines. Does that mean that if you have a 75% response, you are doomed? Hardly, but only a detailed analysis or further study could say what, if any, effect that has on outcome. (Remember, most of us didn't do neo-adjuvent and have no idea what our response was, yet here we all are...)
Then too, studies are studies. We are individuals, and at the end of the day, your odds of recurrence are 0 or 100%. Know that you have done all that you could to find yourself in the first group. (Full disclosure here: I am a research/information junkie, and I have to remind myself of this constantly!)
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Suze - your diet sounds very healthy. Is it a particular diet? I would like to read up on it.
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Lisa - I'm basically doing Dr. Keith Block's diet from "Life Over Cancer" and while it is hard to stick to it 100% (I give myself a break every now and then), I feel soooo much better when I'm on it. It is basically whole grains, veggies, low-glycemic fruits, NO dairy, and limited protein outside of fish, beans, tofu, and healthy nuts. No veggie oils. Diabetic-friendly and anti-inflammatory.
A sample day for me is steel cut oats with soy milk and blueberries, 1/2 an apple with a small amount of peanut or almond butter, a huge salad with natural dressing and sunflower seeds wrapped in a flax wrap, 6 or so olives, fish with fresh veggies or tofu stir fry with brown rice, and applesauce before bed.
I keep track of everything at Fatsecret.com - it tallies up my fat, protein, calories, all that stuff, so that I'm sure I'm keeping a good balance and my fat under 20%. It's not exciting but I'm starting to use different grains, like quinoa, and that is helping, and I plan my day out every morning.
I really liked Block's book - he recommends a LOT of supplements, and I don't do too many, but the diet made sense.
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Regarding NeoAdjuvant Chemo...I had one treatment and a complete response. I was in a trial and clearly it was an overdose (for me) (in hosp. for a week) but it did work. Pathologist said nothing there but dead cells. Just a fyi, then I had MX, TE''s, 3 AC's and then reconstruction, so a total of 4 chemo treatments. That's all I could tolerate...it'll have to do
Regarding doctors that keep you waiting...I almost hate to share this, but its a sure fire way to get seen right away. When I get dumped in a room and wait excessively (20 mins max) , I open the door, summon someone and tell them sweetly that I have to leave at __ o'clock whether or not I've been seen. I'm always the next one seen. If I can't even get back to a room, I let the receptionist know (just a bit loud) the same situation. I've only rescheduled once, and it was worth not waiting 2 hrs. I just won't do it anymore. PLEASE don't tell everyone. We bc people need to have a few secrets in our cache.
I've been away from the boards...realized this is probably as good as I'm going feel (boo hiss) so am trying to get back in the workforce. Wish me luck!
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Thanks suze. I read his book at one point, but thought it sounded too restrictive for me. I was still in treatment at the time and was lacking in the devotion to changing my diet out of self pity.
But I think I will go back and re-read it. I just bought some quinoa this weekend. I had never heard of it until I started reading all these cancer diet books. I have not yet cooked it. I think the anti-inflammatory approach makes a lot of sense.0 -
Hey ladies,
So I'm day 13 post my first A/C. Having trouble with the neupogen shots (chest pain, breathing - onc thinks its the sternum producing the cells and not my bigger bones, ie. hips, legs). My next A/C is already delayed )possibly friday...maybe even Monday or later...
Wondering as triple negative, would having my A/C not DD be okay and skipping the neupogen and having A/C on a 3 week regime? Any thoughts? I know it's not as effective...but...
Kg.
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Hi Girls,
I went to the gyn oncologist today to talk about the ooph.... they said I could have the tissue expander's put in at the same time...to start recon... Has anyone had TE 1 year after Mastectomy? I am so scared of the pain... I want to go on vacation in July and I am not sure what to expect since I am healed from the initial surgery? Any thoughts???
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Tracie: Carrol2 on Breast Implant Sizing 101 & Exchange City had to have her recon delayed and is going through it right now, so she should be able to answer your questions and address your concerns.
dclw: I didn't think I had a complete response but when I finally had surgery, what was left had completely died-they told me both of my masses were just dead cancerous tissue.
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Thanks MBJ, I just posted on her thread
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Thanks MBJ, Tracie23 the Breast implant board is very helpful. I don't know if you are suffering from middle mild back pain but once the TE are in. The body becomes more balance. If I am making sense that slumped over feeling goes away as you are expanded more.
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My friend who is Stage IV with Mets to the bones and liver finally got back to me on what chemo finally worked for her (she tried a few). Abraxane is kicking it's a$%#! Her cancer markers went from 1300 to 300 over the last month and a half. I am so happy for her and how well she is doing. Just wanted to share this to give those of you with mets or who are resistant to chemo hope!!!
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Hi girls! Long time no talk! Just wanted to send warm wishes out to my TN sisters!
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KC! How are you? Missed you and glad to hear from you...
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I just got another PM from the SPAMMER...I just told "IT" to f*** off...it was fun! .."just send $100.00 and blah blah blah".
I don't have a $100.00...and if I did it would go in my gas tank..ha ha.
Fighter..13 weeks hey? Good stuff...Some of the aches and pains from chemo are receding somewhat right? Getting hair, eyelashes, eye brows......good for you... it's like coming out of this dark area called chemo to becoming YOU again...I like it...
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Hi girls!
I've not posted here in a while, but wanted to shout out a HUGE thank you to everyone on this board. When I first got diagnosed, I came here and found you. And though I don't post too often, I have found the advice, and information contained in your posts to be very valuable.
I am officially done with chemo. Today was my last day (I did DD AC and DD Taxol). I know (logically) that my hair won't even think about growing for at least another 2 weeks (since that's how long it took to fall out the first time), but I can honestly say, I'm looking forward to a little "Human Chia Pet" action.
Huge Hugs Ladies!!0 -
I've been lurking for a bit, but not posting because I am still not sure of my TN status. Biopsy Path said "weakly positive for PR--needs to be re-tested at excision", so Onco has been saying I will get hormones and he considers me positive. I thought the anti-hormones just worked on the ER, for which I tested neg., and I told him this. He kinda blew me off, but he is a good Onco doc.
I had neo-adjuvant chemo and had a complete response (WOOHOO!!!!), but that also means there was nothing there for them to test for receptor status. So then BS said weak PR was a false positive and no hormones (supposedly discussed it in clinic with Onco).
Saw Onco yesterday and he talked of starting me on 5 years of anti-hormones. What?!?!?! He said he doesn't recall the conversation with BS. He took another look at my path report from the biopsy and decided to request the biopsy be re-tested.
It is all a bit frustrating. Don't want to take 5 years of needless med if I don't need it. OTOH, if I DO need it, I need to know that.
Can I hang with you guys unless/until I find out I am/am not TN?
I had BMX w/o reconstruction on March 29th and should start rads in 1 to 2 weeks.
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ForMyBoys: Welcome! Congrats on your complete response, but I see your dilemma: nothing to re-test. It's also hard when your BS and onc don't agree on things, mine disagreed a lot. The fact that you had a complete response makes it more likely you are TN, I would think. There are others here, I believe, that started out TN but were later classifed as weakly ER or PR+, maybe they can respond to your post. In the meantime, you are welcome to hang out!
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Thanks Lynn18!
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ForMyBoys- I am 3% ER+. I am being treated as TN. No follow up meds for me. I have read that some weakly positive ER or PR are getting meds. I guess it depends on your oncs point of view! My dr. feels Tamoxifen would do me no good. Hope you get an answer soon!0
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good morning ladies, had myy 3rd treatment yesterda, am now down with the FEC part of this yeah no more red devil for me. So far SE are managable Onc added in some other anit nausea meds for me and it seems to be helping yeah last go around i was so sick and a just pathetic lying in bed crying I hate being that girl, this time just the normal tired no motivation to do much but thats ok, better than dry heaving and crying all day long. Next three will be doxotaxol, supposed to be easier according to most woman but some do find it harder with fatigue and bone pain, hope i am in the first catagory.My parents are down for thsi round, first time i have seen them since being diagnosed, i think it was a bit of a shocker to really see what it is their daughter has been going through. They were traveling in arizona when i was diagnosed and I just told them to finish their trip as i didnt know what they could do for me at that point I still hadnt done surgery at the point and was clueless on this process. In hindsite i would have like them here and was secretly hoping they would have just come but I have learned through this that I have to ask for what I need and not assume people should just be able to figure it out. Had so many friends just dissapear during this,it hurt, but the ones that did step forward with their love and conern have really touched my heart.randon acts of kindess have taken on a whole new meaning to me.I had to PVR the royal wedding for my parents lol, so guess i will be watching that today might have to pop and extra sleeping pill this afternoon and have a nice long nap lol.
Hugs to all that were in the chair with me this week, hope you SE are minimal
Kymn
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slcst12: Congratulations on being done! Come on over to the Hair, Hair, Hair thread to encourage the chia pet hair!!! Big hugs!!!
formyboys: Welcome to the thread and from what others have posted here, if you are just slightly positive their doesn't seem to be a huge benefit. What you could ask your onc to do is test you to see if you would respond. Why go through all of the side effects if there is a possibility that there won't be any benefits? I forget what the test is called, as I didn't require it, but maybe someone else can chime in.
Kittycat: How are you doing? Good to see you here and hope all is going well. Are you all done with radiation and has your skin responded well to your treatments?
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Dear everyone thanks for your support. I am doing well. I am tired from rads and I really have not felt anything from the xeloda. I hope it is all working. My blood is good. Will see doc again.. See one every week a rad onc or just the onc. So I feel like I am in good hands. I will be getting on a PARP trial for TNB if this does not work!! Make sure you TN check this out and talk to your onc about PARP inihibitors... there are trials in the phase III stage.. That means FDA is next if all goes well. I use to have alot of joint pain!!! Started taking Tumeric every day a couple of times a day and now no problems.. I do squats and walk a lot!!! I was so happy when that went away!! So give it a try. You can buy it at Walmart or Target in the supplement section. It is a spice so it does not hurt you!!! My onc knows I take it... All you ladies need to ask about your breast if you still have them. Are they dense... this is the reason so many of us have been dx with late stage cancers is because the mammograms could not see through dense breasts!!! Please check out DENSE NY or areyoudense.inc on facebook... write your politicians ask your docs!! This has to change.. To live through this nightmare we all must change this world somehow. Dense breast bills are being passed through out the country!!! This is important. Look it up.
One more week of rads. and we will see how it is all going. I am praying for the bad juju to go far away.
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Towny: I hope that everything you are doing continues to work for you and thank you for the link.
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I'm new to this journey - just had first chemo 04/27/11. I want to learn all I can about the beast called "triple negative" breast cancer because I want to kick it's butt! I'm so sorry to hear that there so many of us in this battle, but maybe we can all draw strength from each other.
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