Calling all TNs
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Hi ladies
I check in and lurk these days but try to keep tabs. Especially on Inmate and Minxie these days. Prayers to all going thru this.
Just about 3 years ago (I think tomorrow) I was diagnosed and, so far so good, no sign on return. I feel like I've lived last 2+ years in a low level of fear and resignation, and now it's kicking in that I better snap out it!
Kidsanslabs - yay you're done. Hang in there! I had carboplatin and taxotere. The last round was toughest for sure. Was sp aick of gatorade! I rebounded pretty quick tho, and was soooo happy when hair started to sprout. My eyelashes came back fast.
Jenjenl - I also worked thru treatments. I didn't necessarily have to but it was more often, for me, a welcome distraction a few days after infusions and some stir craziness!
Enjoy your weekend sisters!0 -
congratulations swiftbird 3years whoop whoop.
yep your living and alive, dont let the critter dampen your living unless need be.
life is to be lived~!
xx
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swiftbird, congratulations!
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Hi all - Hope everyone is having a great weekend! I had my first TAC treatment on Thursday and am plugging away. I've had a few episodes, so I know I need my anti-nausea meds. My bones and teeth ache even though I'm taking claritan; however, the worst of everything is this stupid port. I had it put in on Wednesday, and IT'S KILLING ME!!!!! I wouldn't let them use if for my first chemo TX. I have five more treatments of TAC. I would like to ask you if you found that you felt worse as you had more treatments, no effect, or it got easier. I know it's probably individual, but I'm trying to get an idea of what is most common. I have to make some traveling decisions with work toward my fifth treatment, and I'm not sure what to do. Thanks! Lauren
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Swiftbird, congratulations. I think I know how you feel. It was three years for me on Oct. 27th and since new years I've been on a big kick to get more organized, purge and start anew. For the past few years, this wasn't something I could really bring myself to do. Somehow going through my pantry, closets, mixed up drawers and cupboards didn't matter. Not that my house was a mess or anything...it's just I didn't care like I did before BC. Maybe parts of the "old" me are coming to the surface again and I like that.
Welcome to all the new ladies and a big hug and hello to everyone on here. I hope you all have a great day.
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Congrats Swiftbird! Glad to hear TN success stories on this thread!
Welcome to the new ladies. I just finished my 4th and final round of T&C. I found the fatigue to get more challenging with each round. I do believe it has a lot to do with your blood counts. Most of the SEs are manageable with meds. Just make sure to eat well ( including meat/beans etc to keep iron up) and drink plenty of water. I was able to work F/T and travel on a business trip. Make sure you listen to your body and get plenty if rest. I am sleeping 10 hours a day. Also waking up every two hours with night sweats though
which is another little problem with chemopause.
Question for all you experienced ladies. I was diagnosed TN, with 2% E+, anyone else with this diagnosis and did it impact your treatment plan? I was pre-menopausal going into this and now I hit the brick wall.
Hugs to you all!0 -
Swiftbird, Congratulations on three years! That is fantastic. One of the oncologists I went to said if I made it to three years that was a very good sign. Sugar, I feel like I am just now starting to feel somewhat like my old self. I've been pretty physically inactive, trying to exercise here and there, but also working many late hours trying to stay ahead of bills. Yesterday I went to the gym and did an hour on the treadmill. Staying fit used to be very important to me from my early 20s to mid 40s and I let my business get in the way from age 45-50 (when I got diagnosed.) While exercising, I felt some of the old "spark" again - so I am going to renew my effort to exercise at minimum three days a week.
Lauren, my response to TAC was cumulative and even though I worked throughout, I still took about 5 days off after each infusion. I struggled a lot with nausea however, and also was anemic in addition to low WBCs. My sister had no nausea at all with TAC. I've read a few accounts on this board where the person receiving TAC continues their jogging routine all through chemo, so we all have such different responses to these drugs. You may have a better idea after the next treatment.
Loafer, I tested less than 1% ER receptors by initial core biopsy, however, following neoadjuvant chemo, the remaining tumor (which was pretty much the same size) was retested and it showed 5-10% ER receptors. In my case, I was put on tamoxifen. There is another lady on here who is 3% and on tamoxifen. It is possible that they may suggest it for you. I had regular periods at age 50 when diagnosed but went into chemopause. I have not had any periods return. The plan for me is to take tamoxifen 2 years then switch to an aromatase inhibitor like Femara for 3 years.
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Great to hear from some the "older" ladies...ha ha..you know who you are...I think that it is important that some of us come back and tell the newer ladies that yes..we are doing ok....I remember reading about women a couple of years out and doing fine and just crying my eyes out..hoping to be that person one day...and yeah..here I am...it's called payback time...the weird thing about being a few years out is wondering if it is OK to realy move on...to forget that maybe this crap never really happened...to let go and just live..it is hard..it really is...I just want to be happy and carefree but not sure if I can....bc has changed me I feel like I'm way too serious all the time and that wasn't the old me...but maybe it is cause I am getting older...53 now..my parents ar now 78 and 80 and I know that they aren't going to live forever...ah..sorry didn't mean to bring anyone down...but dang I want to get old but I don't want to LOOK old..dang it...
But I did buy some what my DH calls "ho" boots....I like 'em...and the older fella's at the casinos I frequent seem to like them too...lol....
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Lauren - Sorry about your port. I did TACx6, and yes, it did get harder each time. The first two were pretty bearable, and I kept up a pretty normal work schedule and even managed to play in the orchestra for two weekends of Pirates of Penzance. But my body quickly started sending me signals that it was not business as usual - getting out of a chair required energy, and by #4, I was walking significantly more slowly than usual. Still, except for the day of chemo (Thursday) and one or two other days each cycle, I pushed myself to get to work for at least part of the day.
One big piece of advice - I was encouraged by a friend and fellow survivor (though not BC) to swish and swallow some olive oil every day. I did 1 tbsp twice a day and seem to have had less trouble with mouth sores, dry mouth and, most importantly, whacked-out taste buds. My taste went on the fritz perhaps 2 days each round, and then for about 2 weeks after my last tx, but it quickly came back to normal. Also, are you icing your fingers and toes during the Taxotere? I did get some tingling (and it got worse each round), but not debilitating and it cleared up within a few months.
Wren - actually men do have some normal levels of estrogen, and they can be ER+. But that's a good question, and I wonder how that affects their risk factors.
Swiftbird - Thanks for the encouragement! I love hearing those stories.
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Lauren, I did TAC X6 and each treatment was harder. More fatigue especially But I did go to the gym a couple of times on week 3. Body aches and joint pain was a hassle for sure. Please reconsider any travel while on chemo...catching a virus could be very serious. The news is reporting that influenza is in epidemic proportions and not about to go away anytime soon. While in chemo I stayed away from anywhere people gathered (church, movies, concerts) and was a paranoid germ freak and wiped down grocerycarts, washed my hands frequently and wouldn't let anyone hug me except DH.
Loafer, I can't help on ER+ info. I was ER 0% and PR 0%. I think that there are some TNs here that have been weakly ER + and wear considering Tamox.
Welcome to the newbies. and congrats to those who are now "oldies" and celebrating big milestones.
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Hi Lauren: I did Dose Dense ACT and found AC harder then the Taxol. I was very sick with vomitting and nausea and pretty well only felt good the day before I would have chemo again. I had a lot of "anticipatory anxiety" and could not sleep even thinking about my next dose. I got an anti-depressant and some sleeping pills and that helped me SO much. Taxol was easier on me - a few days of bone pain that I managed with warm baths and Advil and I was good to go. Watermelon helps with the nausea and you can eat it in bed, dry cheerios, protein shakes and popsicles helped. Also mashed potatoes. I lysoled EVERY light switch and door knob daily and none of us got sick last year while I was having chemo. Better homes and Gardens has a cook book dedicated to Breast Cancer - they have recipes for side effects ie: nausea, mouth sores etc and it was really helpful. My mom would cook out of it for me. Hang in there.....you WILL do this. I can't believe that I am 9 months post chemo now.
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Hello all -
I'm 30 years old, just diagnosed 12/14/12, triple negative. There was some weak showing of progesterone, but not enough for them to consider it positive, so they stuck with the TN status. I will start neoadjuvent chemo in a couple weeks after I complete some preservative fertility treatments. The closer I get to starting chemo, the more "real" it all seems. I wore my wig out the other night just to test it out. Not bad, glad I did it. I have always loved dressing up and wearing wigs, but I truly never though I'd need one. Sheesh.
My mindset is now in a mode where I just want to get this over with. I am not negative about my prognosis -- I live in Pittsburgh and am at one of the best women's hospitals in the country. I have great support from family and friends, too. I'm just very anxious to get everything started and moving along. The only thing that really gets me is that I may never know why I got this stupid effing illness. I am so angry about it, it makes no sense. NO family history, no high risk factors whatsoever. I am getting tested for BRCA next week, but I doubt that will be an issue. It's complete bullshit. Now I completely understand why people are so passionate about breast cancer funding and research. I suppose we are at least lucky to live in a time where research and treatment have come a long way and general prognosis is much higher than in the past.
The only question I have is how can I help my mother? I fear for her mental health. She is just not taking this well, and I'm hoping as we go along, her anxiety will ease up. Any advice?
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I'm on amazon now and want to get a cookbook (or two) and the triple negative book. I just want to make sure i buy the correct books. Does anyone have an opinion on the Cancer Fighting Cookbook The Cancer-Fighting Kitchen: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery by Rebecca Katz and Mat Edelson (Aug 25, 2009) or the Better Homes & Gardens pink plaid New Cook Book, Limited Edition "Pink Plaid" : For Breast Cancer Awareness (Better Homes & Gardens) by Better Homes and Gardens and Tricia Laning (Aug 9, 2005) and is this the correct triple negative book to buy? Surviving Triple-Negative Breast Cancer: Hope, Treatment, and Recovery [Hardcover]
Patricia Prijatel (Author), Carol Scott-Conner (Foreword)0 -
Lauren,
Can you download a sample of the cookbooks and see which one you would prefer?
S
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Flimsical- welcome. It sounds like you have all your ducks in a row.
I was 42 when I was 1st dx and I dreaded telling my mom. I knew it would trigger a mother's biggest fear. Let her help you if she lives nearby. That will help her the most. Wishing you all the strenght you need as you begin this journey.
We're here if you need us.0 -
Lauren
I recently purchased The Cancer Fighting Kitchen and I love it. I wish I would have had this as a resource 3 years ago. If you like to cook, you will not be disappointed.
Kim
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Hi Lovelies!
Re: cookbooks...I love Rebecca Katz book and also a fairly new one called "Kicking Cancer in the Kitchen" written by two survivors. It is flat out wonderful. They are real and so encouraging. The first half of the book is about their journeys and the second is filled with recipes. We have been trying them and I have had no complaints so far ;-)
Chemo begins Wednesday...I'm filled with nervous energy, didn't sleep more than 4 hours last night even with an Ambien, Xanax and 2 homeopathic pills my naturopath suggested.
To all the new sisters here...welcome and lots of love. To the survivor/thrivers...thank you for your love, hope and support.
Now to try and get some sleep...blessings,
nanc
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Hi Flimsical, I was diagnosed last June. I'm 37, and like you, no family history and none of the traditional risk factors seemed to apply to me. I also wonder why, but obviously never will. I am also weakly progesterone positive (3 out of 5) which seems to be more common among younger women. Apparently only about 3% of breast cancers present this way--lucky us! If I were you, if you don't already know, I would find out how "weakly positive" you are for PR. My MO has put me on Tamoxifen. He feels that if the side effects are not bad, then it's worth a shot. I've scoured every resource on ER-/PR+ cancer, and there seems to be a view that there has to be "a functioning ER pathway" in order to get any level of progesterone positivity. In any case, I'd ask your medical team about it.
I also have "The Cancer-Fighting Kitchen" and would highly recommend it.
Nuke number 9 today. Almost half way there!
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Flimsical, I found an informational booklet for moms who have daughters with BC. I am sorry that I cant remember who the author was. I agree with advise to let mom help. I had BMX before chemo. While recovering at home I asked my mom to come over and wash my hair. Was probably the best thing I could do for both of us. I did not have her come to chemo tx. But she would come over later in the evening and made a habit of bringing a gift of sorts. Made her happy. I know that she was very nervous while I was in tx. A mom is a Mom no matter how old their children are. Good luck to both of you.
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Hi filmsicle and welcome to out TN family. My mother at first was a basket case. She blamed herself as she does for everything--like she gave me the cancer. It finally came to a point where my husband and I had to sit her down to talk. We told her that her behavior did not help me or give me strength to get through this ordeal. From then on she has been better and makes this no longer about her or the way she feels...at least she does not vocalize it around me anymore.
Maggie
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Hi Girls ,
It's been six months since i last posted here... So i wanted to say hello, wish everyone a happier year. I am doing ok still in remission.
Have a great day everyone.
Monika
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Hi Monika - excuse this question if it is way off, but I'm still learning about this tn cancer I have. If yours was DCIS (which is the best kind), stage 1, etc., why do you say you are in remission. Isn't the cancer gone? I thought remission was only for cancer that was not totally cured. I guess I need to do some additional research. Good to hear you've been clear. I'm still waiting for the results of the BRCA tests. Thanks, Lauren
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Lauren15 - as far as I know, there is no cure for TNBC cancer. We all just hope for long remissions, when there is no evidence of disease.
I hope your BRCA test comes back negative.0 -
wow, didn't know that. I totally misunderstood then that I was doing neo-adjunctive treatment with the hope that the cancer would be shrunk or totally gone by the time I had surgery (which I was planning to do BMX to lessen the chance of recurrence). I'm ordering that triple negative book now. I better read it. Thanks for the info.
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OMG!!!! I did not know this Karen....I am in shock.....how come my doctor did not tell me that TN was not curable. Does this mean that we basically spend the rest of our lives waiting for it to come back???? I am so confused. My doc said that if I went 3 yrs out my risk of recurrence went way way down.
Maggie
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I believe there is a possibility of tn cure, either if the tumor fully responds to chemo or if the treatments in total eradicate it. I saw a Dr. O'Shaunessy (expert in tn) quoted sometime this year saying "we cure most of those," referring to early stage tn. She didnt mean that most tns have a complete response to chemo necessarily, but that they are able to get rid of many of them with treatment (chemo, surgery, radiation). I hoping my neoadjuvant chemo got rid of mine. The mri halfway through taxol looked good. Surgery is feb. 12.
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I was likewise told by my doctors that after five years with no recurrence, tns are considered cured. That doesnt mean we couldnt get a new primary. Hormone positive bc can recur over 15 years.
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http://www.eurekalert.org/pub_releases/2013-01/wcmc-rra011113.php
Maybe there's hope!0 -
Until my recurrence, I wasn't aware that breast cancer could morph from positive to negative. And when it spread to my liver, they were hoping it had changed back to positive.
Before you worry yourselves to death, remember the odds are in your favor!0 -
And in my case went from negative to positive.
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