Calling all TNs

marial

Thanks everyone for helping me feel like I'm not alone !

Titan - it's good to know I can feel free to rant here! I think I am finally starting to go through some of the chemo enduced menopause( aim 43) because I have noticed certain days I am ready to explode..plus the sleeplessness has really set in



Once the chemo is done, I think I will be doing a mx on the other side..as well as ovaries removed, and am really confused about the reconstruction..as originally I was looking for the simplest way.thinking it was implants but not so sure with the whole TE! My thought wAs my upper body has been so violated,I didn't want my lower body to have to heal as well..uggg..will I ever feel normal again

Fighter_34

Welcome Marial!!!!  Sending vibes your way hang in there chick!!!

Dlcw: post we all need encouragement from each other.

Heidi: hang in there and I hope you feel better soon. How long does it take for Botox to wear off once injected??

The local news around my way had a guy brining awareness to breast cancer. He was deeply moved my breast cancer. Why? He lost three SISTERS to this CRAP!! I was just balling and balling yesterday over his story. So just when you think you have it WORSE...

Well I am off for my morning blueberries...no DONUT over here.

JenC

Heidi - So sorry about your vertigo and doc issues.  That sucks.  I would tell him to f off and get another doc.  Big hugs. 

Titan - I agree with you.  Seems like there should be more we TN's could do.

MBJ

Mariol:  Come and speak with Whippetmom on Breast Implant Sizing 101.  She can answer all of your questions and concerns.  IMO:  It is the least invasive of all of the reconstructive options and if you are elegible, they can do immediate/delayed recon so that you don't have to do an extra surgury.  If you PM me I would be more then happy to share my before and after pictures of my own journey.  Having TE's was not the most pain I have ever been in and i now have amazing looking breasts--something I could have never imagined after going through all of this BC stuff.  Hang in there!

Heidi:  Arghhhh!  That is one of my pet peaves--I hate showing up early or on time and then being made to wait!  I wouldn't put up with a dr. not replying to an emergency, either.  No way, not after all we have been through.  Hugs!!!

MBJ

Titan:  There are so many things including being TN that I wish I had a little pill for.  I received a letter from TNBC regarding all of the new research that's being done, but mostly it felt like an advertisement for people selling their wares and giving some of the proceeds to TN research.

Fighter_34

Red Eye update...

Just wanted to let everyone know that the clear eyes worked. Maybe my eyes are just a little more easily irritated nowadays (shrugs shoulders). However, I did notice that my eyelashes are coming in more and more.

I am officially 13 weeks Post Chemo today, and I feel pretty good no aches or pains. Other than the usual 'fear' every now and again I guess I am okay.

Sending well thoughts...

MBJ

fighter:  glad that worked for you!

Lynn18

Welcome Marial, hope chemo goes well with you.

Heidi:  I am sorry you are feeling so badly.  I hate being at the doctor's office, period.

Good news for me, I had my six-month mammo/US on my "good" side.  Everything looked good.  I love getting the results immediately.   Also my abnormal BRCA 1 was reclassifed so I am now BRCA 1 negative , but BRCA 2 is still inconclusive and so my parents are getting tested.  Weird, I just want to know one way or another.

Now I just need to make it through my 6 month onc and RO appts next week.   And I'll be good to to go  for another 3 months.  Like Heidi says, I feel like I am dodging one bullet after another, that's exactly how it feels like! 

dlcw

Hi All - had my post-trial scans yesterday (mammogram and MRI) and will meet with docs next Thursday to discuss them prior to surgery.  My anxiety is really starting to skyrocket as I approach surgery.  I just read an article that was forwarded to my by another participant in the study (I am doing the neoadjuvant gem/carb/PARP at Stanford).  The trial docs are using this 2007 study from MD Anderson to asses Residual Cancer Burden as a predictor of outcome and for use in recommending (or not) additional post-surgery chemo.  I have been assuming I will do some sort of chemo after the trial regardless of response.  I still have a lump although it is much smaller, but I am mentally preparing for news that there is still cancer.....can I ask how many of you had a complete response to neoadjuvant?  This study from MD Anderson was not specific to TN's but it was nonetheless pretty sobering for those that had a residual cancer burden that they placed in category II or III (quite a bit of cancer left).....so, now the pessimist in me is assuming I will be a III and I'm doomed.  I'd love to know that there are folks out there that had something less than a complete response and are still around....

 Also - if anyone is interested in the paper, PM me your email address and I'll send it to you.  I have it as a pdf - it has lots of graphs in it and I don't know how to post it in here.

Heidi - sorry about the botox side effects - I have had vertigo many times due to some ear damage from a scuba diving mishap in my college days...it's awful and I hope it resolves soon and you find a new doctor.

Fighter - glad to hear you are feeling well and re-growing your eyelashes.  I think part of what I'm dreading about surgery is that afterward I will start to have the traditional chemo side effects of hair loss - the trial only caused thinning that is probably not noticeable to anyone but me.  I feel like that's such a silly thing to be dreading as I know it will grow back...

Going to go tackle the mountain of laundry that never seems to go away and then maybe take a walk and try NOT to think about having cancer for a while.

dlcw

dlcw

Just wanted to add that this study I think isn't really comparable to what most of us are doing today so I'm not sure why Stanford is using it.....I'm also trying to talk myself down a bit as well....but, it's not a huge dataset (241 women) and they don't differentiate between TN and receptor positive and we know that TN's are more responsive to chemo. 

Anonymous

Well, now I just have "residual dizziness". At least I can function. I really don't know what else to do at this point. I am not going back to that doctor and I'm not sure I want to mention it to my GP (yet) and be subjected to a barrage of further testing. I don't like it and figure I just have to gut it out. SEs from Botox can last @ 3 months according to what I have been told.

So, it s*cks, but we've all been through worse at this point. I do get a little nervous thinking about brain mets, but my onc told me I'd be *much* sicker if I had brain mets (I know this from a previous scare). So, guess I'll just keep plugging along.... don't want to totally ignore it, but don't want to whip myself up into a frenzy either.

If I'm still affected 2 weeks from now I'll go more pro-active with a solution.

Thanks for all your kind words. There are so many in here dealing with more serious issues. Take care.

Suze35

dlcw - in my search for reassurance, I've scoured most of the threads on this board, and I have found numerous examples of women who did not have a complete response and appear to be fine years out.  It sounds like you have had a decent response, and that is a GOOD thing.  Any response is good!

I know I am probably one of those stories that scares the bejeezus out of you, but I am RARE!  And on a positive note, I have apparently had a very aggressive cancer in my body for 8+ months, and no sign of mets as of April 4th.  Even my MO was surprised at this, and she is hopeful that being aggressive and doing more chemo will increase my chances.  Right now, with chemo and exercise/diet, she is hoping to get me over the 50% mark.  I know that sounds low - it IS low - but it gives me hope that I'm not automatically doomed.

I think adding chemo at the end will prove to add survival benefit down the road, they are just now starting to do clinical studies to find out.  Unfortunately, this TN beast is so hard to figure out - but as my RO has encouraged me, we just can't know what cancer will do, and he's seen some great outcomes with women in my shoes. 

All I can offer you is my understanding and hugs, because I know words won't give much comfort.  I hope all comes out okay for you during surgery. 

Fighter_34

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!

Teka

I just received a private message from (elisasmith47), which turns me off even more to any so called preventative supplement treatment for BC recurrence or metastasis.  Some people have no shame.

dlcw

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!

Suze35

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.

Teka

Suze35,

No one should prey on our BC misery.   Thank You!

Suze35

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!!

Anonymous

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?

Titan

I got the spam from an annajohnson and a susansmith....I just ignored them....

Luah

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!)

lrr4993

Suze - your diet sounds very healthy. Is it a particular diet? I would like to read up on it.

Suze35

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. 

tnbcRuth

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! 

lrr4993

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.

kg1234

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.

tracie23

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???

MBJ

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.

tracie23

Thanks MBJ, I just posted on her thread

Fighter_34

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.