Calling all TNs
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Paulding Mom! I missed your post! I can't believe I missed it! Hey! You had better get in that PARP trial...can we do anything at all to help with that??? A phone number or something? How could you be denied that..just how can you? I can't stand just sitting here and not being able to help out...
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Titan- to quote a wise person I know:
"I read on line somewhere..that if you feel good...and feel healthy..good chance is that you ARE..take that and run with it..not everyone reoccurs... "
Stop second guessing that PET...
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Pauldingmom: I am so sorry and only wish I could do something. I know that this isn't the Nature Girls thread, however, the Anti Cancer book--Are you following his protocol while you are waiting for a PARP trial? This could happen to anyone of us and hearing you go through what you are going through has really hit us all very hard! Hugs! Come here and rant and visit as often as you need because we are all here for you. Sending you many good thoughts!
Titan: DCIS means you have a better chance then most--I wouldn't sweat it!
Laurajane: I already sent you a PM and realized I didn't mention the name of the book! Anti Cancer A New Way of Life written by an MD who has beat brain cancer-twice!!! Hugs!
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Sometimes I think we are all affected by this:
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So many stressful situations. I am hoping for the best for all of you.
LJ: be a pain in a$$ to whoever you need to. I am glad that you are going for a second opinion. Your well being, both the physical and the mental deserve to have a compassionate Onc. And as far as the insurance....be firm...keep calling. Let them know that you are taking names. Everytime you get a NO for an answer ask to speak to a supervisor. Keep pushing. Don't be afraid to use the big words, like NEGLIGENT CARE....then ask to speak to someone in the RISK MANAGEMENT department. That should get someone off their butt. You are a strong woman. Get what you want and need.
Lisa Hugs to you. And lots of Prayers.
Thanks to everyone for posting. This site is such a great place to come for support.
Navy
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Titan:
No, I would think you would have had problems by now if there was something there they missed. My scans were done only because my onc treats a lot of triple neg gals and she takes every precaution, no matter if it's stage 1 and no nodes. She just goes aggressive with everything for triple neg, even the chemo. What did I know back then, nada - absolutely nothing, so I am grateful for her aggressiveness. Those are the only scans I have had and I pray to God that will remain so! Any ache or pain I mention to her, she asks me would you feel better if I order a bone scan, or a PET - and then she has to chase me down the hall! The mere mention of a scan and I'm out of there. Fortunately, so far anything that has bothered me has only been for a day, and goes away. I pray it stays that way. I'm kind of like Heidi, I prefer not to know anything and not going digging for it, unless it becomes something I cant deny. Until then, head in sand and butt in the air!
I am on a couple of boards and I have become aware of how many gals come on as newbies and wonder if their docs should be doing any scans. It just surprised me that some triple negs don't get them now - just being diagnosed. I know if were just starting out now and knowing what I know now but didn't know then, I would only go to someone that was very proficient with triple neg cancer and make sure all tests necessary were done. I just lucked out with my choice of onc's.
Many of those that didn't have scans are doing just fine - as you are. Just wanted to mention it to the new gals coming on so they don't have learn about them after the fact. Certainly didn't mean to scare you or anyone else reading the post - just passing on info we learn because we've been there already.
Linda
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LJ - I agree with HeidiToo, I totally understand your rage and frustration and all the emotions. You are unfortunately in the gray area. Take a Xanax and forget all this at least for tonight. Hugs and much Love.
Vina
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"I'm kind of like Heidi, I prefer not to know anything and not going digging for it, unless it becomes something I cant deny. "
Actually, nothing could be further from the truth... I want to know *everything* but learned early on that most of the knowledge only served to scare me sh*tless.
Since then, I have learned that everything is better in moderation--*even fear*.
So, I try to maintain perspective, realism and humor.The only exception to that is when I see/hear Stage 1 negative nodes progressing to Stage 4. THAT is the *cold terror* thinking I try to suppress. I can not imagine going through that and am sickened when I hear that one of us is.
"There but through (name your entity to maintain political correctness) grace go I." Followed by a "don't jinx yourself by thinking about it" mindset. Silly maybe, but a coping strategy none-the-less.
So far, so good.
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Has anyone experienced pain in their rib cage area from AC treatment? I have pain on both sides, although much more on the right side, under the breast. I am wondering if it could be just from my digestive issues, but wondering why the rib? Does anyone think it could be something that I should be worried about? I have noticed this pain for several days now and am trying to massage every night. Very worried, girls. Could this be a sign of something? I am in treatment and just finished my 4th AC.
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lovelyface- no real answers from me, but it's late and I wanted to reach out. Call your onc in the morning; he/she is the one to really decide if there's anything to worry about. Until then, try to rest (easier said than done, I know).0
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Now that I think of it though, many women do experience some bone or joint pain during chemo.
Breath... and call your onc for a better answer.
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LInda: Amen to that!
HeidiToo: You hit the nail on the head! LOL!
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Thanks ladies, although my mind is racing, as you can imagine.
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lovelyface: I would speak with your onc! Are you getting Nuelasta or Neuprogen shots after each chemo? Sometimes women have bone pain after these shots. I hear Neulasta is less painful although more expensive and that getting shot in the belly cuases less pain. Hang in there--you have all of us to help you through.
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Heidi:
I understand you post completely and did not mean to imply in mine that I didn't want to know absolutely everything there was to know about my situation. I am still amazed that in just a mere few weeks I got my PhD in triple negative breast cancer, and still study it fanatically. I just am not one of the mindset (due to fear) that would get any relief from getting scanned in any way unless I felt it absolutely necessary. Some gals get great comfort from it, knowing that all is well and their pains were not cancer related, while I, on the other hand would rather hang from a tree by my nails. I too absolutely freeze with morbid fear upon hearing one of us gals has developed problems, while knowing full well that stage, nodes, etc. matter not with this sneaky beast. For the most part, I feel I have come along way with my fear, but there is that part of me that I believe will be ingrained forevermore that holds a pocket of unbridled fear. Logically, I realize, it is what it is and whatever happens, will be. I will just have to deal with it the best way I can. Emotionally, however, I hear of another's misfortune, especially another triple neg gal, and I am instantly shot to hell.
I hate this disease with every fiber of my being -
Linda
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LRM216- yep, fear vs. knowledge; an ever-changing balance of choice. Some days I dance my way through and other days I crawl. As long as I remain upright I figure I'm OK.. sorta. (Sigh)0
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Ok, now that I have finished chemo (even though I did not finish the complete regime) and have started I am getting paranoid of mets. the doctors keep saying they will check me every 3 months but they haVe said nothing about scans or anything and when I asked my onc about he said why do tests that are not necessary. What the hell does that mean. Sorry, just had to vent a little. I hope you are all doing wellk and Paulding mom my thoughts and prayers are with you.
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Just want to say, thanks, ladies, for your insightful posts over the past day. I hate that we are all going through this, but it is some comfort to know that others are struggling with the same fears and searching for some coping mechanisms, as I am.
PauldingMom: So good to hear from you, you've been on my mind all week. And what a lovely post - you inspire me with your grace under fire. Desperately hoping you get the PARPs and continue to do well. Keep us posted on your progress. (((hugs)))
Lovelyface: There is a lot of useful information right on this site for triple negatives - it's from 2008, but much would still be current. On Mx versus Lx: http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/#q20 And other issues you may be wondering about: http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/
Hope that helps. I know it's an anxious time.
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Lovelyface..bone/joint pain is very common with chemo..I think my pain came from the Neaulasta shot. My hip bones hurt, my shoulder/neck area hurt..my ribs probably did too...My skin even hurt...it was like having the flu...at least for 24 hours...I'm sure it is just the neulasta shot doing its job.
JenC..my oncs told me the same thing.about the tests...I too go every 3 months. The rule of thumb is if you have "something" new that lasts more than two weeks. I like that..if I have a pain or a twinge or whatever..I think ok..wait two weeks..usually it is gone in a day or less and I have forgotten about it by then. I still have to go every 3 months until next September...then maybe every 6 months..I hope!
Believe me..even if we don't get alot of scans..the oncs are going to keep an eye on us all for a long, long time...
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Good morning everyone. Got the results of my blood tests and my dr said I am healthier than I think, which is good. My WBC count has finally started to creep out of the 3 range and into the 4 range -- finally! My colesterol is a bit high and my TSH is quite low and my hormones are out of wack. Looks like I went into menopause permanent like
. So my dr is starting me on bioidenticals to try and balance me out. I will let you know how it goes.What I really wanted to share with everyone here is regarding Vit D3-As some of you already know, I take 8000 iu combined with Vit K1 800 mcg per day. Well, my Vit D levels came in in the mid 60 range--in otherwords I am maintaining my levels from before BC by taking this amount! Here is an article as a reminder to us all as to just how important is is to take this daily!
http://archive.constantcontact.com/fs026/1102452079631/archive/1103881486688.html
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Lovelyface no worries BE strong!!! Yes it's a fact no node involvement gives us a better chance and the assitance of vitamins and taking really good care of yourself gives you an even better BOOST.
MEDICAL FACT CANCER CELLS ARE WEAKER THAN NORMAL CELLS BOOST THOSE NORMAL CELLS. It's usually when cancer goes un-daignosed it gets a chance to out power normal cells don't LET IT. HOP OFF THE COMPUTER STOP WORRYING, AND WORK ON YOURSELF.
Your battle to prevent a re-bound starts NOW go low-fat, work-out, SLEEP 9 hours or more rechargers your system and get those D levels up as high as possible.
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Titan you are basically two years out. HOORAY!!! How do you feel I hope some of your fears have left the building?? You will be fine and all will be well. Do the happy dance this summer because you will be so close to 3 years you can taste it.
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Thank you all for your concerns and prayers. Part of me wants to know all the answers and part of me wants to bury my head in the sand. One day at a time.
My Onc. did not do a CT scan or any other scan. I was told that at the time it was not neccesary because it would just show up every little dot and we would be doing biopsies all over the place. In fact I had a CT scan ordered by another doc. for back pain. That's when they found the liver lesions and biopsied them. That was inconclusive. Crazy illness. There really is no rhyme or reason to it all.
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Everyone - thank you so much for the information, links, Vit D and dietary, exercise, advice. I have not exercised through chemotherapy since September 21st, and I am feeling very guilty and scared, but I am going to start right now, today at least 20 minutes on the treadmill, no matter how I feel. My Onc. gave me 2 weeks regimen of Vit D, but then has never checked the levels again. My Vit D was 22 at the time of my cancer diagnosis, which was low and I need to bring it up to at least 45. My onc. nurse told me to stop all vitamins during chemo. Does anyone take Vit D during Chemo or have you stopped taking it for now? My last visit with my Onc., he told me that there was no evidence of cancer and that he could guarantee it. Hoping he is right, I will then assume that even though I have not exercised and eaten right during chemo, and have been pigging out, that I have not done much damage to my cells yet. That even if I begin to be healthy from today, I still have a chance to stop a recurrence. You ladies, agree, don't you? Yes, I am extremely anxious about getting a recurrene, very scared. Thanks again, everyone. I love you all and pray for all you strong, beautiful women.
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OMG..LovelyFace..don't worry about being "perfect" just yet..you could drive yourself crazy. Since you are still doing chemo, a little exercise will probably make you feel better but don't over do it...Those are some strong drugs going through your body right now...and if you are enjoying your food then so be it...recovering from breast cancer and its treatments is a long process.
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Lovelyface,
Chemo is so haaaard... Don't worry about doing everything "right"... Just get through it. There will be plenty of time to worry about diet and exercise. (And I say this as a diet and exercise perfectionist!)
xxoo
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Lovelyface - Dont stress you have been under enough of that through this whole process. I was not able to excercise really since January. I have had 4 surgeries this year, then chemo so I have been pretty much out of the viggerous exercise mode for some time and have put on the pounds. I am now doing radiation and with the holidays comming up I am not "pigging out" but I am also going to enjoy them and all the goodies that come along with them, there will soon be a new year to start fresh
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PauldingMom sending gentle hugs your way. Hard to say relax because I know you can't. It took me two weeks just to come to terms with things, and I still have my low times. I just have my moment and jump back on the bandwagon.
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As usual I agree with Titan, don't over do it. YES excercise if you feel well enough and if not don't stress about it. Pushing yourself to do things that your body is just ready to will set you back. {{{{{{HUGS}}}}}}
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