Calling all TNs

Teka

laurajane and Suze35,

Sharing your trip to NYC is the best thing that has happened to me in days.   I now need to go watch my favorite romantic movie "You've Got Mail" which was filmed in NYC.   

Survivor2Be

Ladies,

I haven't been on in awhile, but I was just diagnosed with a chest wall recurrence while on radiation.  Timeline: diagnosis 9/2010, chemo finished 5/11, BMX and ALND 6/11, TE 7/11 and radation started 9/11.  Found the lump 2 weeks into radiation (not there at the beginning).  US/biopsy found 15 mm tumor with IDC.  Will now head for more scans (MRI/CT), surgery and additional radiation.  No chemo recommended at this time.

Any similar stories?  Should I assume that my prognosis is worse since the tumor grew during radiation?  Any ideas why would it grow during radiation?  Has anyone else had a recurrence that soon?  Did you have chemo again?

Thanks for any input.  Gathering another round of questions for the medical team. 

Anonymous

Actually, I *have* had people tell me to write a book before on all my animal experiences. Problem is, I'm not sure I could live long enough to finish it... not BC... too many stories!

BTW, I wore my "F*ck Awareness: Find a Cure" tee to my son's rugby game today. For those of you who have never had the experience of being around rugby players, suffice it to say that they are a colorful group. And the rugby songs are the epitome of political incorrectness... totally gross, extreme macho and loads of fun (provided you've downed enough alcohol).

Anyway, I got a kick out of watching the side ward glances and suppressed smiles as these young studs would pass me (I'm very high profile, as I take the team photos). It felt good to be so scandalous.... and a player's mother no less.

So, this old dame still can raise a few eyebrows when she chooses too. Rugby,especially during the month of October, is the perfect venue for making a point and, seriously speaking, after the shock factor of seeing a 50ish gal wearing such profanity I think people actual *do* think about the message the tee shouts.

One can hope...

bak94

I love hearing the NY outing! I will have to get some fashion advice before I go! Im afraid I have pretty much turned into a "farm" girl and my style consists of blue jeans and black t shirts. When it is raini.g I accessories with those high style muck plastic muck boots! Best part or day today? Shopping at costco with hubby then coming home and letting the chickens run around. Running into a good friend's mom while shopping! Great day. The whole day.

bak94

Sorry for typos. Using phone as I sit outside with the chickens!

jazz3000

Survivor2- sorry you've had to go through all of this only to find out you have another tumor.  From what my Doctor tells me that's one of the issues with this type of cancer. The possiblity of a recurrence is higher than with other types. I don't think radiation has much to do with it. Just a cluster of missed cancer cells seems to be the reason for the recurrence. The radiation treatments would help shrink it I think.

I can't really share much at this level other than to say it sounds like you have another waiting game to determine how your health care workers feel you need to deal with it. So so sorry it's even an issue. Hugs and Hopes 4 you.

Teka

Survivor2Be

Recurrence isn't necessarily a worse prognosis, but may require a change in BC treatment.   

Titan

LMAO..at everyone..!  I needed that!

My bridezilla and my dh roasted wienies out tonight...I asked them to bring them inside so I wouldn't have to take all the "go withs" outside..well...she was carrying the wienes on the fire stick and fell into the house..weinie juice went all over the place..course I freaked out because we are having people over the day after the wedding and I had just spent the day cleaning my **s off and now there is hot dog stuff and blood (she stubbed her toe...now the toe is ruined for the wedding like anyone is going to see it anyway)...and we had this big blow up...over hot dogs.

Give me strength..please someone...

lwarstler

Oh Titan!!! What a night! Times like that is when I wish I had a dog to clean it up for me. Sorry for the rough night. I remember telling myself as I pannicked about everything before my wedding that the day was going to come and go and be whatever it is, but that the important thing is that I would be married at the end of it. Hopefully that will be the case with your daughter and some day when it is all over and done you'll all be able to look back on this night and laugh.

gillyone

Heidi - I went to a small college in England where we were all "learning" how to become teachers. On Saturdays when the rugby team played at home, they would all congregate in the college bar (drinking age 18 so we were all legal) in the evening to replay the game, drink, and sing rugby songs. The rest of us were vastly entertained and loved tp participate in the sing alongs. Ah, those were the days!

laurajane

Good Morning Ladies~

Survivor- I'm so saddened that you are going through this. It is a scary time for you. I know every ones cancer isn't the same but I would strongly recommend you get another opinion.  Not to scare you but just to get advise about possibly more chemo. I had the max amount of rads finished May 2011, local recurrence then skin mets in July 2011, I've now tried Xeloda, then Abraxane/ Avastin and am now hoping for a chemo that will slow this FC down. Surgery was out of the question for me due to the location of my tumors clavicle, interior mammary gland and sternum and lymph area and with the skin mets of course. This started with one tiny tumor in my lymph area I found in the middle of July about a month after my port had been removed. I'm hoping that surgery will take care of it for you but as so many women on here told me second and third opinions really do make a difference. I think if I had stayed with my original onc I don't think I would be here today. I'm wishing you the best. I'm curious as to what chemos you have done. Please keep us posed on whats going on.

MBJ- I'm hoping that you will still be able to enjoy some of the beautiful foliage in early November. Depending on the amount of wind and rain it can still be beautiful that time of year. I hope you are ready to enjoy snow too! I think the changing seasons are wonderful. Winter is the longest season so my recommendation to clients is to design your landscape with that in mind. So many people only consider Spring and Summer interests

Suze- I'm thinking maybe next week-end for NY. Depending again on what my onc says on Tuesday. I sure hope I get another scan and I'd also be curious as to how much my markers have gone up in a week. 

Heidi- Go Girl! What a hoot! I would love one of those t-shirts. Did you have it made? 

Bak-Jeans and a black t-shirt or tank is what I live in. Oh I truly believe shoes are the most important accessory. LOL I used to have chickens when I lived on my farm before I bought this little bungalow in town. I loved them and really miss having them. It's kind of funny because I had selected dual purpose but I fell in love with them and I could never allow killing them for meat so we just enjoyed the eggs.

Titan- I'm sending you a cyber bottle of wine. I think you really need it along with some of this Atavan the girls keep talking about. Good luck. Stop-Breathe 1,2,3,4, stop breathe 1,2,3,4,

I hope everyone is having a good morning so far. It's kind of cold and rainy here. A perfect day to cuddle on the couch with a good book. I just may do that. 

MBJ

Survivor:  I am so sorry to hear what you are going through.  It was my biggest fear to have my cancer return to the chest wall.  I agree:  Get a second & third opinion.  I think a second chemo may be in your future and you want to work with someone who is an expert in TNBC.  Hugs!!!

Laurajane:  It's overcast and gloomy here so even though we don't get the seasons, it seems that Autumn has arrived anyway.  It is my favorite time of year here-crisp air and sunny days mostly.  It's the only season I will miss here.  If you are 100 miles North of Luisville, you are 10 degrees colder but we will be planting for year yound color.  From what I understand we get lots of ice and less snow but weather all the same.  Lots more rain.  The transition will be huge!

Anyone ever read/hear about the site http://phoenixtears.ca/?  Supposedly a special way of making hemp oil (doesn't get you high) that is supposed to knock out many cancers.  I don't usually pass this sort of stuff on but the site shows you how to make it and I think if I were to have a recurrence I would give it a try at least.  Medical marijuana is legal in California so this would probably be an issue elsewhere including where I am moving to,anyway, any thoughts anyone?  BC sucks and it is so frustrating to hear about recurrences and not be able to help in any way.

Teka

MBJ,

I wouldn't hesitate to be in a FDA approved clinical trial.   I am now 6 months out from last BC treatment and feel somewhat normal.

MBJ

Teka:  Glad to hear it!!!

Suze35

Survivor2be - you've gotten good advice. I strongly encourage you get a 2nd opinion, preferably at a larger facility that has a strong cancer center. Having a recurrence means the original chemo didnt do the job. I know my doctors would reommend more chemo, perhaps in a clinical trial setting. MDA is in Houston, and though there are hoops to jump through, it might be a good place to go, as they can give you many top notch options. This really sucks, I am so sorry, but never count yourself out.



bak - jeans and a black tee are perfect! Make them skinny jeans with a cute sandal, and voila! Lol. I love hearing about your chickens! My neighbor has some and she gives me fresh eggs all the time, yum. My oldest helps her take care of them .



Heidi - off-color language, beer, and rugby players? That is my idea of a perfect day lolol!



Titan - it's almost over...it's almost over... Repeat. She'll be your sweet baby girl again as soon as she says I Do!



Laura - cold and wet here too, blech. I will probably be in the city for a quick weekend this weekend, then the following weekend for a bit longer with family. I know how much you want to sculpt, so if I'm there maybe we can do a quick dinner down in NoHo!



MBJ - I feel your frustrations, tenfold. I just keep thinking there has to be SOMETHING, anything, that will help us. I believe in using complimentary methods, and once I get back on balance I'm going to get my a** in gear and figure out a regimen. I always read what you post with interest, thank you.




Teka - I agree about clinical trials. I wish I had done one right off the bat, and plan on participating in as many as are appropriate now.

~~~~



Dunkin donuts this AM, yuck. Man those things are greasy! Feeling some discomfort in my chest, where the nodes are. Kinda scares me, but I will hopefully have a nailed-down game plan tomorrow.



Good thing for today... Well, last night really. Watching original-recipe Star Wars in the newly released blue-ray edition with my boys. They love the movies also.

Teka

Although, I would like to try a joint before under the sod.   My happy thought for the day.   

Suze35

Oh Teka, that just made me laugh my butt off!! I'm not a smoker really, but have my share of college memories. I might have to shift my thinking down the road lol.

Teka

Suze35,

6 1/2 years of college and only cigarettes and booze.   I could have gone to Woodstock 1969.   Woe is me.

mitymuffin

Yes, LRM216, you put my thoughts into words.  And LauraJane and Suze, and Bak and Jenn, and each of you others, what I admire is how you live through each day, finding the good and the joy in life. Laurajane let us know about the new gameplan.

Heidi, I loved your cat story. Once we couldn't find a cat, but could hear it howling in the house. After extensive searching, I opened the refrigerator for something, and there was one cool cat. Who knows how... 

mitymuffin

Survivor, do go to the best cancer clinic you can and get another opinion. I'm sorry this is happening. 

Titian, hang in there! I have three daughters, ages 21 to 35, all unmarried and the thought of The Big Wedding looms over me. I'm going to start planting seeds about the benefits of eloping, or try bribery. 

bak94

Love the cat stories!

Yep, Mitymuffin, you are probably gonna get hit with all the weddings at once!

Hang in there Titan, it's going to be a wonderful day!

Suze and LJ, see, I knew you would give me good fashion advice. I just need to lose the muck boots, well, at least for the city. Yeah, we don't eat our chickens, eggs only! We are a no kill house! I was vegetarian until my mo said I needed more protein. I still don't eat chicken. Now only organic beef and sometimes fish.

Teka, for some reason I always wanted to enjoy a "smoke" but all it ever did for me was give me a headache and then I would fall asleep! I guess it was not my thing, but now the sleep might be more appreciated!

Survivor, sorry about your recurrence. The other ladies have given you great advice. Keep us posted.

gillyone-that sounds like a great time! Great memories!

tracie23

heidi: I love that shirt... I wish I could wear it... (9yr old daughter) I don't think it would go over well with her LOL.

inmate4232010

Helo Ladies,

Sorry for the delay in posting.  It has been very chaotic around here lately.  I do so love the animal stories, wedding planing and visualizing trips to New York.  Makes me long for the normal days of yesterday!  Oh well, enough of that, back to the new reality. 

The new chemo is definitely not as much "fun" as the last, but as we know the last chemo didn't work so that statement is a bit subjective. Cisplatin really kicks your but putting me to sleep for a week.  Just as soon as I feel energy, back to chemo for Gemzar.  That one makes me really nauseous.  So far I have not "lost my cookies" but there is time for that I'm sure.  Thursday was my 2nd Cisplatin treatment, overnight hospital stay.  We were able to have some fun with a fellow "former baldy" and her partner coming to visit.  We made a dinner party out of it and ordered everything from the menu and then proceeded to eat it all.  Oh boy did we feel sick.  Tons of fun that I will miss I'm sure.  One more Cisplatin/Gemzar then on to the next drug combo.  Man I hope this works!

LJ and Suze.....I can't even find the words.  I am so sorry you have to deal with the pain and I am so in awe in both of you.  My thoughts are with you every day.

Survivor....I was re-diagnosed July 1st after finishing radiation on March 3rd.  This time I had 12 tumors in "lefty".  I had a lumpectomy last June 8th to remove the original 4cm tumor.  My onc was amazed and had not really seen such an aggressive return so quickly.   I also have a friend who is battling this disease for the third consecutive year.  TNBC has a mind of it's own.  Get that second opinion and fight, fight, fight. 

In addition to fighting cancer daily I had the honor of volunteering at the 3-day walk here in Seattle.  Here is a link to a video I took of the amazing men and women who walked to find a cure.  http://www.youtube.com/watch?v=oPkOt26QSgU

Happy fall to you all.  Looking forward to wintery weather.  Always makes me feel like being cuddly. 

RJ70

Just home from doing 5k Susan G Komen in Chattanooga TN. Walked this year next a plan to run it! ! I had my surgery Sept.12  still have my dran in. Walked the 5k in 1hr 13min. For the first time in a long time I am proud of myself.

inmate4232010

Good for you RJ70.  Keeping active will go along way in helping with the SE's of treatment!  

christina1961

Rayma,

Congratulations!  I was there, too, but I just did the mile walk - next year I want to run also!  Congratulations on doing the 5K with a drain so soon after surgery. That is awesome!  I had my surgery in July but am undergoing radiation.  It was hot today, too!!

Anonymous

Some humor:

Puns for Intelligent People
 
 
 1.
The fattest knight at King Arthur's round table was Sir Cumference.
He acquired his size from too much pi.
 
2.
I thought I saw an eye doctor on an Alaskan island,
But it turned out to be an optical Aleutian .
 
3.
She was only a whiskey maker,
But he loved her still.
 
4.
A rubber band pistol was confiscated from algebra class,
Because it was a weapon of math disruption.
 
5.
No matter how much you push the envelope,
It'll still be stationery.
 
6.
A dog gave birth to puppies near the road
And was cited for littering.
 
7.
A grenade thrown into a kitchen in France
Would result in Linoleum Blownapart.
 
8.
Two silk worms had a race.
They ended up in a tie.
 
9.
A hole has been found in the nudist camp wall.
The police are looking into it.
 
10.
Time flies like an arrow.
Fruit flies like a banana.
 
11.
Atheism is a non-prophet organization.
 
12.
Two hats were hanging on a hat rack in the hallway.
One hat said to the other: 'You stay here; I'll go on a head.'
 
13.
I wondered why the baseball kept getting bigger.
Then it hit me.
 
14.
A sign on the lawn at a drug rehab center
Said: 'Keep off the Grass.'
 
15.
The midget fortune-teller who escaped from
Prison was a small medium at large.
 
16.
The soldier who survived mustard gas and
Pepper spray is now a seasoned veteran.
 
17.
A backward poet writes inverse.
 
18.
In a democracy it's your vote that counts.
In feudalism it's your count that votes.
 
19.
When cannibals ate a missionary,
They got a taste of religion.
 
20.
If you jumped off the bridge in Paris ,
You'd be in Seine .
 
21.
A vulture boards an airplane, carrying two dead raccoons.
The stewardess looks at him and says,
'I'm sorry, sir, only one carrion allowed per passenger.'
 
22.
Two fish swim into a concrete wall.
One turns to the other and says 'Dam!'
                                                   

  23.
Two Eskimos sitting in a kayak were chilly, so they lit a fire in the craft.
Unsurprisingly it sank, proving once again that
You can't have your kayak and heat it too.
 
24.
Two hydrogen atoms meet.  One says, 'I've lost my electron.'
The other says 'Are you sure?' The first replies, 'Yes, I'm positive.'
 
25.
Did you hear about the Buddhist who refused Novocain
During a root  canal? His goal: transcend dental medication.
 
26.
There was the person who sent ten puns to friends,
With the hope that at least one of the puns would make them laugh.
No pun in ten did.
 

Titan

Heidi..you crack me up seriously.

Ladies..I'm breathing,,,I've told myself to sit back and enjoy this time..damn it!!! Thanks for the wine LJ..I drank it all..feeling pretty good right now..

Teka..seriously..you could have gone to Woodstock?  Wow..why didn't you?  I was just a little too young for the sixties and early seventies.  

I do remember watching the movie about Kent State and just crying my eyes out..My parents just didn't understand my sorrow.. My daughter graduated from Kent...they have a Memorial there now..plus outlines of the bodies of the kids who were shot...very, very sad.

One of the good things about growing up in the sixties, seventies...our kids really don't stand a chance...we KNOW..what is going on...

Have a good week everyone...and if anyone happens to be in Ohio on Saturday you are welcome to come to the wedding...seriously..just pm me...

lwarstler

Oh Heidi...you just totally crack me up! Thank you!

Teka

Titan,

Drunk!