Calling all TNs
Comments
-
Ha Ha Ha Ha. You make me laugh!!
They won't keep him in but you will make him keep coming home.
0 -
*slides into room sideways, leaps onto recurrence couch with ladies, sighs contentedly*
I have just finally had time to read thru the thread ( lying in bed so I couldn't take notes, so don't be offended if I don't mention everyone by name)
All you dear ladies, thank you so much for telling me what you received for your recurrences. After reading them all.....I'm just even more confused by all the different treatments people are getting. Hopefully I'll get a chance to get on a real computer this weekend and do some research thanks to you wonderful ladies!!!
So many sad stories and upsets on her lately
Had my Level I & ll ALND 10 days ago and did fine. 3/9 nodes positive (what they expected). I will be meeting with my original onc on Tuesday. Then I will have sort thru this chemo mess and make some decisions.
Titan - no poker for me sadly.
NavyMom - I am truly thankful for your wonderful news. First true smile I've had in awhile.
Mags - I hope you will please forgive me for this, I know how much hardship you've gone thru with your surgeries, but you really made me *gigglesnort* tonight. I read "Can't wait to see how my 1 butt boob and 1 belly boob end up looking" and thought to myself: NOW, that's a woman who can look down and see herself coming and going!!!! Sorry Mags, I know it was the devil.
Minxie - don't be afraid to bring up a somber question. I'm like you with the, is it time to start tapping into my retirement savings? I'm even wondering if it's time to start getting rid of stuff, in order to not leave my cousin ( my sister to me) with a mess to take care of when I'm gone. I think reality set in for me this week when I asked her to go to the bank to open some joint accounts and a safe deposit box with me and for the first time she didn't argue with me that we had plenty of time for that later, she just went with no argument. It was a hard day for both of us.
Annie my dear dear friend, you know i adore you. I'm sorry that it's you, but I SWORE that I was going to kick the next person that said " Remember what they say "we only get what we can handle" firmly in the ass. *cocks foot, plants firmly in Annie's arse.*. Four days before my ALND I found out I have to fit in 2 laser eye surgeries for glaucoma in before chemo. Picked up a lovely eye infection at the hospital so they are now delayed for 2 weeks, and since they have to be done a week apart, chemo will now be delayed. Somewhere in there I also have to fit in a steroid epidural because my leg pain is much worse (instead of better) after the last one. And tonight was the winner of all awards. I noticed a small leak from the patch in my roof 3 days ago. (The patch that is still there from the tree through my roof, because I'm going to have sue my insurance company to get them to pay). I had my carpenter go over today to patch it because we're getting the hurricane remains here tonight. I stopped by my house tonight to find water pouring through my ceiling all over the place. Luckily some of it is draining thru the electric light into the tub. Not so luckily, the rest of it is going to collapse my kitchen ceiling. SO, yes Virginia, God CAN send us more than we can handle!!!!!!!! Hanging onto my sanity by a thread.
Rant over.
*smooches Annie*
Happy Kathyrnn will return soon, but not for right now0 -
Kathy my dear dear friend. That wet patch in your roof is for kicking me up the arse (It's sore for some reason tonight!!). Thats why we only get what we can handle see lol. Smooches Kathy. So glad to see you are still alive and kicking lol. Just don't stay away too long. Luv yer heaps. (PS every sane person has tree's in their gardens not in the bleeding roof).
0 -
Kathryn...gigglesnnort back at ya...now I have to go get electrolysis on em cuz they are growing hair...imagine that arse hair on me boob... wth!
♥
Maggie0 -
I just love that gigglesnort.
0 -
Awwwwww. What a beaut dog
0 -
Kathy - I agree with you...sometimes it is Too Much! The additional problems thrown our way keep us from over-focusing....there is so much S**t going on, we can't get caught up in any one thing. It will all work out, as you know, and things will quiet down, so take a deep breath. And exhale! Try to continue to handle everything with grace and dignity. Even though it IS too much! I kinda freaked myself out with a whirlwind of unfortunate events, and I am the one that continues to suffer from the shock.
Get someone to put a tarp on your roof until insurance settles.
Delays in treatment are sometimes protection, according to the universe. Put your patience hat on and know that this all will pass! How about: It is what it is? Sometimes that works, sometimes not...anyway, know I am thinking of you during this trying time....take good care of yourself! Stay Calm and Carry On.
Gentle Hugs~
0 -
Dear Friends - no matter what happens to us, we still can share a laugh. I'm grateful to you all for your posts. And I wish better times for those going through hell, whether it's chemo-hell or house-falling-apart-hell. Makes my little problems weem even more trivial.
But, believe me, on THIS forum, I feel I can share them if I want to, even though they are trivial.
Celebrated the one year anniversary of my mastectomy (if celebrated is the right word). Didn't mention it to my DH. We were going to an annual dinner of Purdue alums in our area, and he remembered that we didn't do that last year. But he couldn't remember why. I just said, "I was busy."
Going to celebrate the one year anniversary of my last hair-cut (a 3/4" buzzz) by visiting my former beautician. She cut and colored my hair for years and years. Still don't have enough for her to cut, but we'll get a smile out of what I have.
Nat0 -
Hi Kathy, I'm reading your post and thinking "don't despair" "you'll draw strength from deep down", and then it hit me.... I'm giving you encouragement while at the same time diving into that dark space myself. I work with the public, and all of my customers tell me what an inspiration I am, such a positive attitude, but they don't see me crying into my pillow at night.
balancing hope and prognostic reality is a difficult thing. I think "I need a new car" , then I think "Whats the point"? Do I go on SSDI, or do I continue to work while I'm able, or will it be too late to enjoy life and travel if I do wait to stop working. 6 years to retirement, atleast 7 until my children would be finished college (unless they decide to be Dr.'s).
"what doesn't kill you makes you stronger" ,"God only gives you what you can handle", etc... Yeah, I sometimes question that too. My older sister is battling CML (leukemia) chronic but manageable, brother had a stroke and now contracted lyme disease, neice just diagnosed with thyroid cancer, surgery and radiation tx. MIL passsed in March, aunt passed in May... All this in a years time. Amazingly, I have positive outlook on surrounding events, but my heart breaks for my mother who is 85. She's healthy and sharp as a tack, but I see her pain in her eyes ( why my children and not me). It get's so I sometimes don't answer her phone calls bc I don't want to upset her.
All that being said, allow yourself to have a bad time, don't feel guilty about it, just work through it and enjoy the sunshine, your family, your pets, your frinds, and the fact that we are still here . Now if I can only take my own advice!
take care, Lori
ps. I'm in Phila area. Some rain yesterday, right?!
0 -
on the "God only gives us what we can handle" thing, lets not forget the rest of the verse that states: "...he will also make the way out in order for YOU to be able to endure it."
So we can count on his love and support to get us through all of this. And that's a good thing!
0 -
Ladies first I wanted to post this March 2013 research study I found (very short and easy to understand). May be some good news for us TN's and explain why so many relapses despite being diagnosed at an early stage. (Not sure if anyone posted this already?)
http://news.vanderbilt.edu/2013/03/breast-cancer-study-explores-therapy-to-slow-recurrence/
Annie- that was my pearl of wisdom last year: when you walk into your house in November, you HAVEN'T decorated for Christmas, and your house smells like a Christmas tree.........you're in deep shit. I should have just had them put a tarp over the tree and then decorated the son of a bitch! *smooches*
Mags - I knew you wouldn't be offended. Somebody needs to put a NO-NO on her wish list!
Ruth- gentle hugs back, I'm sorry about your whirlwind of shit. He's putting up a tarp as I type this. Bad news is it ruined the kitchen (already needed repair) and the bedroom ceiling (was fine) . I'm doing the "it is what is is" approach, I just call it the Zen Thingy. When I was diagnosed again, I knew I had to much stress so I had my friend recommend one of the counselors she works with. Last week the counselor asked my friend why I hadn't called for an appt yet? My friend told her, "oh she will, she says she's just to busy with other things and doesn't have time for her nervous breakdown just yet!" Sad, but true, lol.
NatL - anything that concerns any of us is never trivial. Congrats on your 1 year anniversary and have fun with your stylist and enjoy the experience no matter how much hair you have. (Actually, and I know I shouldn't say this but I'm actually looking forward to losing my hair. It's been nothing but an obstinate pain in the ass since it grew back in. I'm looking forward to rinsing "my hair" in the sink and hanging it on the clothes line to dry!)
Babs - so far he hasn't sent any clues on enduring, just more shit. My nightly prayers have been: Dear God, I know I'm supposed to be learning something from this but I'm just not getting it and it appears time may be getting shorter. Please can you send somebody down with some stone tablets so I can figure it out? ;-)
Lori - that's an awful lot to endure in a year! I'm amazed that you've stayed so positive. I was very positive first round (only cried once) but this time I've become a faucet, but like you, only when no one's around. I care for my 87yo frail mother and I see the same hurt, pain and fear in her eyes (she has no one but me). I have assured her that I can fight this long enough to outlast her. ( which only triggers my pain right now because I know I will have to face the pain of losing her soon). I got my demented humor form both my parents. I reminded her the other night that she LOVES to prove me wrong, but that winning the race and outliving me would NOT be a good idea. For once in the last few weeks we cackles like hyenas!!!!0 -
kathrynn..you deserve a huge cyber {{{{HUG}}}} what a wonderful woman and daughter you are...strong and confident with a side of demented humor
oooo never that about a no no...great idea
0 -
Mags, Kathy is precious and priceless to me. I never feel down for long when she is around plus whatever she gives me she knows I can take it and I know she can take it right back. She makes me laugh every time and sometimes we all need a good dose of laughter or a gigglesnort lol and she gives me one every time no matter what else she is going through. I can just imagine the baubles and tinsel on her Christmas tree sticking through the roof lol but if anyone deserves your ciber hug its Kathy cause she is a great daughter to her mum and a wonderful person as well but the thought of her hair hanging on the line to dry just creases me up lol.
Lori I know where you are coming from. At work I too make everyone laugh and they all think I am positive and upbeat but its a different story when I am in the shower and the tears slide down my cheek because I really just do not want 'to go' and leave my family, friends and my sisters on here.
Sometimes we just have to believe that things will turn out ok. I know its hard but for our families sake we can't be down all the time. Rightly or wrongly I do believe in that saying "He only gives..........." because we are all here and we all somehow found the strength to get through what we have been through. Whats in store for us, God only knows but when I get Kathy's demented posts (though not so many nowadays she has trees on her mind) they are like gold jewels to me because they get me through and even though the lady is going through more than I could take she somehow makes everything seem alright again.
I will ponder over these thoughts today but nothing makes my day brighter than reading one of Kathy's posts.
In the meantime how is our LUV, Titan, LRM, Minxie, Lovelyface, Titan and all the other special ladies on here. I hope you are all living life to the full and not pondering on 'whats it all about" like I am today.
0 -
0 -
I'm writing (knowing there might be a better place for me) but like others just looking for hope. 3 days ago, my sister, Age 32 was diagnosed with TNBC with 2 positive nodes biopsied when the 4cm tumot was. She is also 7 weeks pregnant. She is scheduled for a mastectomy on Tuesday, chemo to start when baby is 12 weeks. I'm petrified. So much negative research- after Tuesday they will know more on node involvement and I know that will help, they will also be testing for genetic mutations. This forum has been incredibly helpful.
0 -
Tfosher, I'm so sorry to hear of your sister's diagnosis. No woman should have to go through this, especially when pregnant. Saying prayers right now that they are able to treat her and that the baby stays well also. Prayers and good thoughts to her, and to your family.
0 -
Tfosher I just don't know what to say. What a terrible thing to happen when you are pregnant and looking forward to your baby coming. Once they have done all the tests you and her hopefully will have your minds put more at ease. Try and stay strong for her because she will need your love and support more than ever. Sending big hugs to you and your sister and saying many prayers for you both.
0 -
Luv here checking in. I'm doing well - tumor markers dropped again to 188.5. Remember they were 2000+ a few months ago so the Gemzar is doing its job. I will probably have a scan in the next few weeks. Gemzar is rough on blood counts, though, so I am getting a half dose.
Kathy - I am going to call you in a few minutes.
(((TFosher and family)))
0 -
TFosher- I'm so sorry about what your sister and you and your whole family are facing right now. Please come back any time you need support from this group. Also, make sure to only use reliable web sites. There are a lot that give inaccurate, scary info. The only othe one I can remember off the top of my head is the Triple Negative Breast Cancer Foundation site. (The other ladies will be able to think of some others) Your family will be in my prayers.
Annie, my little love, you made me cry with your post, but they were happy tears! Thank you for reminding me where my mind set should be.
Luv - I was gonna shake Pom-Poms for your news, but I think this is more appropriate.
::whips off bra.....shakes ta-ta's wildly::
Thanks for your call, my warrior friend. It was just the attitude adjustment I needed!0 -
Kathy- ROFLMAO!!!
0 -
Michelle - Congrats on the excellent news! Hampton and I are doing another happy dance for you!
Kathyrnn - I just read about your update. I'm shocked of the recurrence, but know that you will find courage to take care of this again and I'm confident that your team will get you back into remission. Stay positive and know that we all care!
TFosher - That is upsetting news about your sister and I can't even begin to imagine what facing a bc diagnosis is like at the same time as looking forward to bringing a baby into the world. You have our love and support. Please let your sister know she can lean on us at any time.
Peb - Hello! I've been off of here for a while, but will send you an e-mail soon with the updates. For now, yes hair is starting to touch my shoulders (at end of neck) but still gray. I have not colored yet! lol I found an organic hair dye product, called Aubrey Organics, which is supposed to be good. I ran it through the Safe Cosmetics website, and other products that scored a 0 had the same ingredients as Aubrey. I couldn't find the current Aubrey one on the site, but an older version had a good score, and they have changed some ingredients since then, making it even better I believe.
Hugs to everybody!
0 -
Ladies, all of you are my light, you make me laugh, you make me cry really hard, and I am in AWE of what I see and feel here each and every time. Sending you all lots of love and best wishes.
Kathyrnn - I actually had difficulty understanding that article. Did you understand it to mean that Paxitaxol actually makes some cells chemo resistant, therefore, those stem cells come back as metastatic cancer?????? I had paxitaxol and almost all of us have had taxol, so how can this be good news? Sorry, ladies, I am highly challenged with comprehending medical articles.
0 -
Lovelyface I read it the same. Very worrying. I had Pacitaxol (Taxol for short). Where too from here. I wish to heaven they would find a cure for this damn curse.
0 -
I just read the article you all were talking about. It is very worrying for all of us what this article mentions. Are there also other drugs in the same category as well, he only mentioned one drug as a reference, but there are likely other drugs? Did you see there is a name and phone number at end of article. Perhaps the author could do a follow-up article with exact statistics of what they found. If this new combination of what he is talking about can be a better treatment, how soon before it could be available to everyone?
0 -
Adding to your question InspiredbyDoice - What about women who have already taken taxol, what do they do, just wait to see when the residual stem cells develop into metastatic cancer?
TFosher - I am so sorry to hear about your sister's diagnosis who is pregnant. Oh dear, chemo and pregnancy? My heart just breaks! I have to go outside and breath, honestly, I am walking outside. I think I had missed reading your post earlier!
Annie - love you!!!!! You are awesome!
0 -
*KICKS SELF IN ASS*
If I had realized that this would upset those treated with Taxol, I never would have never posted it!
I went away from the article with a different take.
First, they probably used Taxol to test because it is the most commonly used drug in TN. They may have had the same findings if they tested any chemo drug commonly used in treating this disease.
Logically, not everyone must develop these cancer stem cells (CST) because we know that many people have treatment for this disease and go on to live long lives with no problem.
This may explain why a certain sub-category of us relapse. The one thing I've noticed on here is that the initial stage of diagnosis doesn't seem to have any impact on relapse. (We've seen people on here that have been Stage l or ll with no nodes relapse. *raises hand*).
This may explain the reason why SOME people relapse, no matter how early their stage is at diagnosis, and may represent a leap in how this disease should be treated. Sadly for all of us it is still at the animal testing stage. Hopefully it is a positive new direction for the future, and all of us have to keep fighting.
So please relax ladies. We all received what has helped the MOST people with this disease survive. After that, all we can do is hope and pray for the best.0 -
Kathyrnn, We appreciate you sending us the article, we have to know and be informed. Please do post in the future if you have anything to share, I am not upset by it at all, I would rather know.
I think I am relapsing right now (tears, tears, fear!!!!!). My back has been hurting, and the last few days, it has become unbearable. I can't think of any reason for the pain, except some small findings in my neck a few years back on an MRI. Just before I got diagnosed I had this same pain, and now it is back again. I have already convinced myself that it is that horrible thing come back in my bones.
All I have to do now is to get courage and go get a petscan. I recently had very low numbers on my tumor markers, all 3 of them and it was actually very recent, maybe three weeks ago. Could this really be a relapse? At lunchtime today, I went walking with tears flowing down my cheeks, all the memories come back about making decisions. Ladies, should I go to my Onco. and ask for a petscan? Is it that time? Should I do it? I have absolutely no one to talk to, not one single person in my life who can relate to what is going on. The people I have in my life are the kind who would smile and say to me, "you worry too much", it must be nothing.
I feel so alone. Maybe dying wouldn't be so bad, although I could use at least 5 more years to fulfill my dreams.
0 -
Lovelyface, yes, call your oncologist. Sometimes I think it was easier once I knew than worrying and waiting. It could be nothing, but I no longer ignore anything my body is telling me. ((HUGS))
0 -
I agree call the oncologist. I can say that 3 weeks ago I had lower back/pelvis pain and they did a bonescan and it was negative. They deemed it muscular. That helped me and calmed me down. I'm hoping it's something similar for you.
0 -
Lovely, please do not panic!!!! Where is the pain and how long have you had it? As a veteran of chronic back problems, it takes something as simple as a sneeze or tying your shoes to aggravate a back injury.
It could be that you were unaware when you initially did something that injured your back, and the injury is gradually causing your pain to escalate now.
To see your primary and see if he see's some obvious symptoms such as muscle tightness and spasm. If he sees nothing, and it's then been over the 2 week rule, contact your oncologist. Also, don't give yourself a case of the Heebie-Jeebies because several of us have had recurrences. There are ton's of women with no recurrence who have left the thread because they're successfully moving on with a disease free life.
*big hug*
Kathy0
