Calling all TNs

5thSib

Jan69 -- I love beets too, at least the kind that come in the can. I hope the biopsy results come back good.



PeggySull -- thinking about you.

Titan

Quick comment on the taxol study..my onc told me 4 years ago...that in 5 years there would be more studies/treatments than there are "now"...A co-worker of mine 10 years ago had 4 ac's...that was it...then me...5 years later had 4 a/cs and 4 taxol...he said that things are constantly changing and yes they are...it is a fact that chemo does not work very well on slow growing cancer cells...

I dunno...but I think that a slow growing cancer cell is maybe not such a bad thing...

I know that you ladies starting taxol may be freaking a bit...like why go through this treatment if you don't have too...and I agree..but the dang thing is that "they" really don't know for sure...

Kinda sucks doesn't it?

Anyway..welcome to the new ladies..hope you find the friendship and information you need on this site....believe me these ladies will get you through

and I hate hearing about the reocurrences...it stinks....

Has anyone heard from Inmate...miss her

Hey Cocker...how are things....thanks for your concern about the Boston bombing....but they got them....We American's are pretty strong...just like you New Zealanders....

Flautalee

Navy Mom,

You are smart to stay of the statins. My primary care doc wanted me on them ~ they brought my cholesterol down 100 points with no change in diet or exercise, but my MO said no to the statins because they stress the liver and my liver enzymes had been elevated for years since I was on long-term antibiotics for an infection post prophylactic mastectomy w/ expander implant. But my liver enzymes had slowly improved. Good thing my liver was OK when I developed a new triple neg primary in the breast that I'd had BC w/A/C plus mastectomy 11 years before. My surgeon didn't tell me that they can't be sure to remove every breast cell with today's "Skin Sparing" mastectomy. So my NEW surgeon took a thin layer of muscle plus the breast tissue that had grown back.+ marble sized BC in the small handful of cells that grew back. This time T/C plus 28 rads. So I'm almost 2 years out from the second primary, 13 years out from the first primary. Hope everyone is doing OK.

OBXK

Phyllis - my mottled palms, seem to have resolved themselves. So far, it has not been bad. Today fatigue showed up, so I am resting.

I hope you do well with your new treatment.



Annie - hello sweetie!



Wishing everyone a good Sunday!

Cocker_Spaniel

Titan great to see your post, been awhile!!  The Boston bombings- what a terrible thing to happen.  Seeing that  little lads face keeps coming to mind that was only waiting for his dad to finish the race brings me to tears  and all the other people with so many injuries.  What is it with these so-called human beings that they can do this to hurt or kill innocent people.  I do so hope they get their just deserts and more.  Its even worse when they kill and then take the easy way out and kill themselves.  I'm all for justice and an eye for an eye. Yes you are a strong caring race who doesn't deserve these things that keep happening so I hope you all keep safe.

Haven't heard from Inmate or a lot of the ladies for a while now. Hope they haven't forgotten us because you and they helped me through hell.  May be they are just taking a break. 

Have you run any races lately. Hope you are keeping up with the exercise (like me) !!! 

JAN69

Those of you who think beets taste like dirt, you might try washing the dirt off before you cook them.  lol

Cocker, I have been hiding in the bushes lately.  So much going on that keeping up with everyone seemed too much.  Right now it seems I'm sitting in waiting rooms or waiting for phone calls to tell which waiting room to wait in next.  So tired of it all.  DH gives me B12 shots 3 times a week.  I think that's giving me the little energy I have. 

I had my "healthy" breast removed in October.  I love being a flattop.  No bras and no forms.  And in January I changed oncologists.  Old one was old and tired, just like me.

Titan, I've been wondering about Inmate too.  I sure hope she's OK.

OBXKaren, I think about you too and wishing you easy and successful treatments.

Jenjen,  Holding you close Monday.

5th Sib, My beets mostly come from cans, too, but I'm planting beet seeds tomorrow.  See how that works.

Wishing everyone a Sunday full of joy.  Jan

Titan

yeah...ran one 2 weeks ago...took 3rd in my age group....and yes..there were more than 3 in my age group...

Cocker_Spaniel

Good one Titan made me giggle.  At least you wasn't last or was it 3rd to last.  Listen to me, the lazy sod who doesn't know what exercise is apart from getting up from my desk and walking three feet to the fax and even then I'd stretch if it wasn't three feet lol. 

Jan thats got to be good no bras and no prosthesis.  I really hate the darn thing. Its hot in summer and rubs on the scar sometimes plus I have just ordered two new ones and they cost me an arm and a leg all because they have a little bit of extra material in them where the prosthesis goes.  The only good thing is they are now coming out in nicer colours than white, buff, black and blue.  I ordered a rose colour and a lilac one. The lady said don't you want pink. Giveme a break, pink only reminds me of one thing.  

Anonymous

Jenjen - Glad you got the walk with your kids! I'll be thinking about you on Monday.



Phyllis

Cocker_Spaniel

Jenjen I also will be thinking of you. Its not after the operation that they worry about you being sick with the anaesthetic its during the op so no food for you girl.  You will be able to make up for it as soon as you are better. I had a hysterectomy when I was 32 and it was the best thing I ever did. No more menses has gotta be a good thing. Big hug to you. 

natL12

to PhgrahamP - best wishes as you start through your second go-round of chemo. That's something we all have in the back of our minds - with a feeling of dread.

I did the "Race for the Cure" yesterday in Inidanapolis.  Didn't think I'd EVER want to do that...all that overwhelming pink stuff. But it was a good celebration, and I needed a good fast 3 mile walk anyway.    I'd post a picture if I only knew how.

Titan

good for you natl12!   I still haven't been able to do the pink stuff yet...not ready....I do run two 5k's in Ohio though..one for a local girl that had tn and another in Columbus for Stefanie Speelman...also tn...it's pretty rough sometimes....I honestly feel that I could cry the whole way through it.

Stupidboob

Shirley I get treatment every 3 weeks for 4 treatments (she said 3 then scan) but they scheduled me for 4.  She may be just keeping me on the calendar.   If all is ok she said she would stop treatment and start me on radiation, if not we will proceed.

Thanks for the story on Taxol but man does that upset me because I did Taxol too and my cancer is back.   I keep getting all these e-mails don't do chemo as it feeds cancer and I kept telling myself I have no choice so just ignore it.  I paid PURE HELL on Taxol with pain and now just to learn I probably went through all that hell only to feed my cancer and get to go through it again.   I wonder if they will find the same thing on Taxotere, I am scared to proceed now. 

Stupidboob

Hey Ladies......I am happy to report that so far even though I have had some rough days (like 3 with fever) I have still been able to go and do things.  I would not have been those days.  They told me that I would be at my lowest on day 9 with the risk of catching something.  So, I donned on my lovely little mask and went to the vet yesterday and the park today....I was sportin' it....:) 

Peggy:  I just changed oncologist so that I could be with one who specialized in TNBC ......It is the Emory Winship Cancer Institute in Atlanta, Ga.   The doctors are Amelia Zelnac and Ruth O'Reagan

https://winshipcancer.emory.edu/find-a-physician/WinshipContentPage.aspx?nd=807&id=1124&typ=33

https://winshipcancer.emory.edu/find-a-physician/WinshipContentPage.aspx?nd=807&id=268&typ=33

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Phyllis:  I am so glad that your son can help you......my hubby tries his best but he has to work and I have no one else to help.  I have one niece that could but she would not pee on you if you were on fire.......and neither would my neighbors.

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OBXK:  Thank you.......I am feeling better
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Bak94:  Thank you and I am feeling better, but yeah memories turned back into reality.....:(
We all have days where the pitty takes over......don't be to hard on yourself you are dealing with alot.
I have advanced arthiritis in my hip so I know what you are talking about.   I had a touch of it but I think chemo just sent it over the edge the past two years.  Inflammation feeds cancer from what I understand too and all the foods that they tell me causes inflammation is all the food I love to eat......:(   It is hard to just give everything up.
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Luah good way to look at the Taxol story but it is hard when you are the one that it came back on and you received that drug and now being treated with the sister drug of it.   If you or anyone sees an article on the taxotere please let me know.   However, it did make me feel a little better after reading your message.....:)

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I hope I did not miss anyone and I am sorry for those that are going through this for the first time, and the ones going it yet again..........this sure sucks and there is no other way to put it............PURE HELL!!!

Stupidboob

I like beets and I too think they taste like dirt so I guess I like dirt   

Stupidboob

After reading the article on Taxol it has me wondering how many of us with recurrences were on Taxol?

Also, how many of us with recurrence's were on the Neulasta shot?

I am just wondering if the Neulasta is going to end up being one of those "if you or a loved one took" commercials.  We take chemo to kill the cancer which kills the cells and then we take this drug to build it back up at the same time......is that not contradictory, when you really think about it?

Stupidboob

OK ladies I am getting really frustrated.   I have resized and resized my avatar and it shows it in the browse area but when I click save it will not save..............any help please?

goingforward99

Are you changing the ppi or inches?

Stupidboob

I did, I have it down to 60 X 80.  I guess it was PPI because it is a tiny picture

goingforward99

I believe I cropped mine to 1.5 x 2 inches at 72 ppi. I wonder if there is a problem with the file name? You shouldn't have any unusal characters in it (like>*" etc). Just letters, numbers and periods (dot).  You might want to just try renaming it anyway just to see if that helps.

Cocker_Spaniel

Hi Ladies sailed into work today to find my work mate crying on my shoulder.  She has just been diagnosed with a breast lump and also a lump under her arm.  The radiology report says suspicous for malignancy.  She is to have a punch biopsy this coming Wednesday and then the wait for the results.  I was able to reassure her quite a bit and she seemed happier but I feel so bad for her and what she may have to go through.  She is 53 and already suffers with myaesthenia gravis an autoimmune disease. When will this disease stop.  I am just so over it and I just hate the word cancer. 

jenjen - hope you are feeling ok and not too sore from your surgery.

Stupidboob - where did you get your recurrence. Was it in your other boob.  I was diagnosed just around the same time as your first diagnosis.  Stage 3, Grade 3a and I had taxol.  So keeping my fingers tightly crossed but have been feeling a little bit unwell lately.  Just not sure if its psychosomatic or not and I'm talking myself into something because I can do that, anyway I hope thats the answer.

Bak - I hope your hip pain is a bit better and you are able to get around more

Thinking of you all ladies.    

Stupidboob

Finally got my avatar to load.  This was a photo shoot for breast cancer survivors at a local shop just for fun. 

Cocker Spaniel I have a regional recurrence in the lymph nodes and pectorial muscle up to the collar bone.  Don't just think it is nothing.   I never thought it was back but I had been telling my hubby that I did not feel right.  I could not explain the feeling just not right, so when they told me I was not surprised. 

I have been thinking of figuring out how we can get doctors to do more scans and follow us closer.  I think that is why BC and especially TNBC patients lose the battle.   We NEED more attention paid to us.  Whether it is a scan or ultrasound or whatever..... Bloodwork is not enough.  NOTHING showed up in my bloodwork.  My MO said that they are looking mainly for things to red flag that it has gone to the liver or bones.  That is what shows up in the bloodwork.   If it were not for my surgeon following me this far out, mine would not have been caught.
How do we get something started to make them pay us more attention?

schatzi14

I am wondering how many of us had path reports that said the cells were ER+ but a very small percentage? If so, how many were told they had to take Tamoxifen or Anastrozole?

I did the AC/Taxol as well but have been on Anastrozole for 14 months. My MO said "you have done well the first year...better to continue it unless you really can't stand the SEs". Other than losing hair and bone mass...no other noticeable SEs.

Have any of you taken those meds, or do I just have a confused MO?

Luah

Stupidboob: I can understand your frustration and I am so sorry you are dealing with this again. It's everyone's worst nightmare.

However, I'd like to say that there is no evidence that routine scanning following initial treatment for early stage BC (including TN) has any benefit with respect to treatment decisions or patient outcomes. This is why standard followup care practice guidelines are: regular mammo, physician visits with clinical exams and (sometimes) blood tests. You may be interested in this:  http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-after-follow-up and also this: http://www.lbbc.org/Learning-From-Others/Ask-the-Expert/2011-04-Triple-Negative-Breast-Cancer#testing

It's good that your surgeon was following you, and as these links show, regular  doctor-patient communication is likely the best early-warning indicator of recurrent disease.   

Also the neulasta shot is used to boost white blood cells (to fight potential infection); I don't think there is any relationship to cancer cells, other than the fact that neulasta enables us to take larger doses of chemo more frequently which can be helpful in killing aggressive cancer cells. As I said in an earlier post, the original research on that taxol article does not "condemn" taxol as a treatment against fast-growing cells, but suggests that in the future (after human trials)  another agent needs to be added alongside.  

I try to remind myself that there is no point in looking backwards... as my very smart and wise BS said to me once: "We make the best decisions we can with the information we have at hand." We need to get to a place where we are at peace with that.... and that is very tough I know, especially when you are dealing with a recurrence. It's human nature to look for a reason to explain things... something to blame... and the frustrating truth about BC is that no single thing explains it, and no single thing is to blame.    

I wish you well, and hope your treatment is gentle on you, and wickedly hard on those mets. 

Stupidboob

Thanks Luah.........all that makes sense.  It is just frustrating in my mind right now as there were no symptoms or anything to discuss with the doctors and had we not caught it on the Ultra Sound (most surgeons I understand drop following at one year) then when they did catch it there may have been no hope.   That is what frustrates me with the whole "never scanning unless we suspect an issue".  I am giving God the credit here because it just simply would not have been found and that is what scares me for the future and especially since mine as already returned. 

mitymuffin

Hello Ladies,

I haven't posted in a long time but I do read your posts and my heart goes out to those who are struggling through treatment and especially those with reoccurances.



This week, three years ago, I was diagnosed with BC and had a lumpectomy and began this journey. I feared I would not reach this three year mark. Today I am healthy and though I still tire more easily, mostly I feel fine. For those of you recently diagnosed and scared, remember the odds are on your side and most likely this will recede into your past. Be encouraged!

Again, my heart is with those with reoccurances and I hope the advances in treatment will prove an answer for you.



Regarding the Taxol question, I believe studies have been done comparing AC to ACT and even for TN it is still more effective. I bet these studies could be googled up if someone wanted to take the time.

Best wishes to all.

teresa008

This is VERY interesting and new:

http://www.cleveland.com/healthfit/index.ssf/2013/03/copper_depletion_shows_early_s.html

teresa008

Here is the actual study:

http://annonc.oxfordjournals.org/content/early/2013/02/04/annonc.mds654.abstract?sid=48f5965a-48ec-4c2b-879a-52b241804dcd

mags20487

Wow exciting indeed...what made me a little bit angry was that this study was done in 2007 and it is still not available.  Gotta love the way this system works.  Is it because there just is no money in a cancer free society?  Sorry ranting...just burns my butter!

Maggie

teresa008

I don't think the study was done then, it was just that one person had been on it during 2007 and they were still kicking it fine! ) This was just published in March 2013. I also emailed the doctor involved to see when/if phase 3 was going to start. I'll let you know if I hear anything back.