Where are the tri-negs!

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  • dhettish
    dhettish Member Posts: 501
    edited March 2008

    After reading that article, I look at everyone's dx (those who have it) and how long they have been alive. There are a lot of TN's out there w/ no mets. I am so glad because I get so scared sometimes. I just finished my chemo 11 days ago and have awhile to wait this thing out. But I plan on packing in a lot of living in between.

    I had cancer 21 years ago and once I got through, I learned to dive, cave, rappel, and stayed outdoors. As I got older, I found gardening and now I tend to be homebody with my garden and cats. Was out in my gazebo today enjoying the spring like weather and the birds and the few flowers that are beginning to bloom. Life is good. I took a 30 minute hike in the woods but I am really not ready for that and it wore me out. I used to hike for 8 hours!

    Debbie 

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  • RN2teach
    RN2teach Member Posts: 312
    edited March 2008

    Happy Easter to those who celebrate this day.

    Happy Spring to everyone!

    I was a little taken aback by the prognosis at recurrence of TNBC, too. Sheesh! like we needed MORE bad news....

    Still, it is what it is. We can't change what we have. We CAN be proactive with our health and vigilant in monitoring for recurrence (gotta be better to catch those recurs sooner, eh?). Who knows, maybe they'll figure out what feeds TNs soon and we'll have a targeted therapy.

    AND, the biggy, we can LIVE! We are all going to leave this life the same way. I'm trying not to waste my "living time" worrying about dying.

    I know I've posted this before several times, but it gives ME hope so maybe it will help someone else. My dh was diagnosed w/ brain cancer (GBM- glioblastoma multiforme, the worst type of brain cancer) in May 2006. His onco is a very positive fellow and he never gave a prognosis. But I quickly learned that his prognosis was dismal. Most GBMs are dead w/in 6 months, only 1 in 5 make it to 2 years. His tumor was removed, had chemo and rads, and he just had another clear MRI on March 14! His type of cancer is much more likely to return than ours and it doesn't get better with time like ours does. But we don't like with a black cloud hanging over our heads. We are living!

    "In the end it is not the years in your life that matter, it is the LIFE in your years." Abraham Lincoln

    Have a good Sunday all,

    Paula

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  • susieloutoo
    susieloutoo Member Posts: 107
    edited March 2008

    Love hearing all tha positive words!

    RN - I agree 'it is what it is"! So I just deal with it...

    I had chemo last summer, bilat in Oct and rads in Dec/Jan - I am sooo tired now....just got a p/t job and trying to get back to "real" life......

    Does anyone have ideas to get healthy, get more energy and try to avoid a recurence??

    Happy Easter

    Susie

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  • marreb
    marreb Member Posts: 3
    edited March 2008

    Hi Susie,

    I think the best way to get healthy, get more energy and try to avoid a recurrence is by walking. Whenever you can, get out and walk. Not only is it good for your physical well being, but mentally I think it helps better than anything.

    I was dx with bc in Jan/07 and finished my tx in July/07. I am not back to work yet but I feel that I will be ready soon. I am also TN.

    Good luck to you all and Happy Easter everyone.

    Marreb

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  • carolynf
    carolynf Member Posts: 262
    edited March 2008

    Hi everyone,

    Thanks FloridaLady for keeping everyone looped together.  I have just hit my 1/2 way point of Taxol....6 more to go.  I think I am doing good.  I am still working full time, military 1 wkend a month, and am getting ready to coach Softball and also helping plan my sons grade 8 social function. I have a lot of support from friends, co- workers, military and family.  I have also been eating more fruit/veggies than meat.  I am taking quite a few supplements and flaxseed oil.  A friend gave me some Essiac tea which I made this morning and will start taking that tomorrow.  I can say when I am tired I do go to bed or take a nap.   That's usually the afternoon after chemo.  I think its the benadryl.  Two more weeks and I find out if I got the real drug (avastin) or the placebo.  Another milestone to hit.  Thanks to everyone for the uplifting words they write. I am praying for us all and living each day to its fullest.

    Carolyn

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  • Squids
    Squids Member Posts: 7
    edited March 2008

    Hi,

    I'm sorry, I'm new here, only joined to thank everyone for being so kind to Joanne before she passed away (she was kinda everywhere so I didn't know where to go and thought since I was triple neg, here would be good. :)).

    Anyway, fo' all you ladies out there struggling with tripneg and wonderin' how the heck it all works out......I can't tell you that but I can tell you I had bilat masts (at different times each the second one had expanders put in both sides) then A/C with stage IIb and a 50/50 chance at five years.

    I'm 8 years out now with no evidence of disease. I rebuilt my house after Katrina, did an album for breast cancer survivors, I'm about to go into my senior year and graduate with a bachelors in community health and then onto a masters in clinical social work with a focus on cancer patients and therapy there. :) You can achieve your dreams too!

    I've lost a lot of friends I've met via another board and taking care of hospice patients here locally so I'm familiar with fatigue both my own and others. One of the best ways I've found to build up energy is to fight through the fatigue. It's a bit like babies, ya know? Their wee muscles are so wobbly and stretchy and their joints are all loose. They fall down, get up, fall down, get up, the drag themselves up to tables and stand (and repeat as necessary) until they're walking. It's a bit like that. We have to push ourselves to get back to some fitness level. And they don't make it easy, either. How many times have you walked into an onc office and they ask if you've had any weight loss lately? Sealed

    Anyway, walking, biking, running if you're on easy ground or a trampoline and the doc thinks it's okay. Weight training is so important, especially for our bones. A little encouragement like seeing some muscle becoming more defined will encourage you to want to see more  so you might feel like adding in weights to target bra fat or whatever that you developed during your surgeries. It all rolls together and before you know it, you're out there again, doing okay and feeling MUCH betta.

    Go girls! Before you know it, you'll be posting that you're 8,9, 10 years out, lookin' great, feelin' great.

    I hope I make friends with some of you, all y'all sound like a great bunch.

    Squids

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  • RN2teach
    RN2teach Member Posts: 312
    edited March 2008

    I agree, marreb, walking is a "user-friendly" form of exercise.

    Carolyn- you're a bundle of energy, girl! Being in good shape and staying active helps so in tolerating chemo se's. Good for you!

    Squids- I didn't know Joanne, but said a special prayer for her loved ones. WOW, you ARE a survivor, aren't you? First BC, then Katrina... Congrats on both victories! How exciting that you'll soon have your undergrad. degree as well.

    Paula

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  • Squids
    Squids Member Posts: 7
    edited March 2008

    Hey Paula, happy to meet you.

    Yes, I'll be so happy to be done with school, I can't even tell you. :) And yes, I wouldn't recommend surviving one cancer for a distastrous storm but we hafta do what we hafta do, I guess. (sorry, I tend to write in idiom when I'm in a hurry)

    I read your husband's story...wow, all y'all are amazing. What a terrifying situation and yet how wonderful it's turned out. It's wonderful to read a success story like yours. Congrats to both of you. I'm sure you were no small hand in his care too, being an RN. Happy for you both. :)

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  • Laura-Vic
    Laura-Vic Member Posts: 72
    edited March 2008

    Hi ladies ... just had my LAST mtg with my oncologist after finishing my chemo regime. I too am one of those triple negative types. She basically said - get on with your life. You can consider yourself NED right now. None of us has any guarantees but for those of us who have struggled through this journey have been awakened to the importance of enjoying every day.



    She's not one for tests and follow-up unless there are symptoms or something bothering you. Her comment was that for many patients, sitting and waiting between appointments, waiting for test results causes more stress than the 5% of the time that anything abnormal appears. And, of those abnormalities, most are just that - glitches and nothing related to cancer. So, the stress of watching the calendar waiting for the next shoe to drop was not productive.



    I'm going to consider that it's done ... a journey that I would not repeat, but ... I've learned so much about cancer, so much about me, so much about who my true friends are ... I'm a better person now and have better people in my life.



    So - NED it will be. I plan to be here a number of years to come - have lots of people left to meet, to visit and heck yah - to aggravate !!! ha ha ...



    Cheers to us all ...



    Laura in Victoria

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  • RN2teach
    RN2teach Member Posts: 312
    edited March 2008

    Laura,

    Congrats on being finished. May you be NED for many, many, many years to come. Sounds like you have the right attitude--good 4 you!

    Paula

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  • Raye99
    Raye99 Member Posts: 1,350
    edited March 2008

    Hi Ladies,

    Laura - congrats on finishing you tx! I like your onc's attitude. I have a six-month follow up appt tomorrow and I am dreading it - I get so nervous just sitting in the waiting room. My last follow up, I was crying as I pulled into the parking deck (and I don't cry often!).

    Raye

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  • dhettish
    dhettish Member Posts: 501
    edited March 2008

    what is NED? I finished my chemo 3/11/08 but my onc was sick so I did not get to see her. I don't see her until 4/8/08. I am hoping she orders a pet scan to make sure it is really gone. Do they usually do that? Or is it just a waiting game.

    After chemo, I feel like I have taken the boxing gloves off. But has my cancer taken it's gloves off too? Still nervous.

    Debbie 

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  • Squids
    Squids Member Posts: 7
    edited March 2008

    Hi debbie: NED means no evidence of disease. And it's normal to be a bit nervous once you're finished with treatment.... it's like a dependence, in a way, going to get treated then suddenly you're cut free to figure out what to do with yourself after that. It's like all liberations....relieving and confusing at the same time. Undecided Congrats on finishing!! I'm looking forward to hearing how your life continues to thrive in your new world. :)

    Laura, congrats to you too! And my onc is like yours. I had finally graduated to once a year visits but then had an unexpected glitch that knocked me back to six month visits but I think we're over that now. No more blood work, pictures, any of that. I think it's standard oncology board treatment these days, although I do hear of folks having lots more done, which really winds a gal up a lot. Waiting for results is jes the worst in my book. Tongue out

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  • Katrina208
    Katrina208 Member Posts: 3
    edited March 2008

    Hello triple negative gals,

    Happy Spring!

    I just wanted to check in with some encouragement for those newly diagnosed/early stage. I remember being absolutely terrified by this diagnosis and the poor prognosis for this aggressive form of breast cancer.   Now, I am nearing 4 and 1/2 years out from diagnosis and doing very well. I chose lumpectomy, followed by 37 sessions of radiation and 4 cycles of A/C.  That was the protocol back then; now I think most MDs would add Taxol.  

    Because of a job-share situation I missed very little work during treatment, but in retrospect I realize I should have taken more time off that I did, because it took an emotional toll later on. Besides the physical and mental stress of having cancer, I was also trying to cope with the suicide of a relative and  worrying about my mother, who was hospitalized with a bowel obstruction and subsequent surgery.

    Things really came to a head on the day I had a panic attack in the car wash.....just picture soapsuds, dancing sponges---and me, trying to climb out of my jeep while moving down the line!!!!  That was really a difficult time, because I'm the kind of person that other people come to for help, and I'm not so good about asking for help myself.

    I had to learn to take better care of myself emotionally, and set some boundaries.  I didn't really feel depressed, but I was extremely anxious and wasn't sleeping at all. So, I consciously worked on relaxation and quit researching everything to death, especially before bed. I went for daily walks.  As often as I could afford to, I treated myself to massages. And I started low-dose Effexor for hot flashes, and an occasional Ativan for anxiety. Today, I don't take anything at all, but medication sure helped when I needed it.  

    It took me at least a year after finishing radiation before I had my energy back. I had joint arthralgias for 1-2 years, which eventually lessened. I still have right-sided chest wall muscle weakness and occasional spasm, which still persists.  And that 17 pound weight loss during chemotherapy?  I gained it back :(

    I am so very thankful to be a survivor, and believe in celebrating every small moment that you can.  Since finishing treatment, I have been fortunate to celebrate my 50th birthday, my 25th wedding anniversary,  and the birth of my first grandchild.  I'm still working as a nurse, and have become active locally in mentoring other cancer patients and empowering survivors. 

    This is a wonderful site, and very helpful to all of us during treatment and beyond. It's great to share our stories and gather strength from one another. Hang in there!

    Katrina from Minnesota

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  • Katrina208
    Katrina208 Member Posts: 3
    edited March 2008

    Oops, I forgot my stats:  DX 10/2003, IDC, 3.2 cm, Grade 3, Stage IIA, ER/PR/Her 2 negative

    Katrina from Minnesota

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  • pennylane
    pennylane Member Posts: 177
    edited March 2008

    Hi Katrina, Just wanted to tell you how much I enjoyed reading about your post-bc life and thoughts.  Very informative, very encouraging, very calm and insightful.  I had same surgery and treatments as you and your words make good things seem possible...Thank you so much!

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2008

    Katrina,

    What great advice.  I learned a lot of the same things with my cancer journey.  It's  all about finding a balance in all areas of your life. From the emotionally side and very much the research side.

    Living in Hope

    Flalady

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  • guitarGrl
    guitarGrl Member Posts: 697
    edited March 2008

    Laura - I am much relieved to see what you wrote. My onc is also one of the why look for trouble types. For a short time I was worried that maybe I was missing something. Like something uncomfortable and/or painful or whatever. Glad to know that this isn't totally unheard of even though it might not be common.

    Especially as a tri-neg, I've been so worried about what happens after treatment. During there is always someone to talk to. But later? How do you know what a symptom is????

    susan 

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  • Laura-Vic
    Laura-Vic Member Posts: 72
    edited March 2008

    Susan - I hear ya ... as to what is a symptom ...goodness really knows. I think the 2 week rule seems pretty normal - if your hip hurts, you're coughing or whatever beyond 2 weeks ... that means call the doctor. As my oncologist told me - if you've pulled your muscle at the gym, it'll feel better after 2 weeks and that's not a symptom of anything more than a pulled muscle. If you're short of breathe - that's a call to the doctor. I've already told my GP that if I become a hypocondriac, be patient with me for the first while, after that, he has my permission to whack me upside the head - hahahahaha !!



    You know what - nobody has any guarantees. We've been given a window to the reality of our mortality. Although I don't plan to experience that ... I do plan to live every single moment. I'm not going to focus on "what if" - I cannot change it, I cannot control it but I can choose how to react to it. As long as I do not give it any more energy - it cannot take my energy. Cancer will no longer have my attention - it's going to be an experience, a PAST experience.



    Take a bow for all us girls - we're a pretty special group and we are strong. We will be around for many many years to come - that's my plan.



    Laura in Victoria

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  • RN2teach
    RN2teach Member Posts: 312
    edited March 2008

    We are a special group, aren't we, Laura?!

    I'm determined to not be paranoid the rest of my life. But I do know that I want to monitor things closely, so I may be a bit of a hypochondriac, too! LOL I'm sure I'll find the right balance so that I can go on with my life.

    I have a wonderful onco (who happens to be dh's onco as well). He is smart, experienced and gives it to me straight. I know that will help as I begin my life as a BC survivor--I know I'm already a survivor, but I kinda feel like I'm in autopilot right now until I finish treatment.

    Just had Taxol #2 today--it went very well. The decadron has me a little hyper right now. Hope the benadryl counteracts that so I can sleep tonight. Two more treatments to go and then I'm on to rads.

    Good night all--gotta go for my neulasta injection in the morning.

    Paula

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  • wetcoast
    wetcoast Member Posts: 193
    edited March 2008

    hi brenda,

    I just had my last tx of ac yesterday and move on to taxol in two weeks. What kind of se have you had? Have your white cells gone down even during the taxol? I was told it wasn't as hard on them. I have been doing neupogen during ac up to 8 shots each cycle. Maybe I am getting excited to soon.

    hope you have a good sleep laurel

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited March 2008

    i'm 6 years (oops -make that 6 MONTHS) out of treatment - lump, chemo and rads...feeling great  most of the time...still pain in the boob from a post-op seroma that does not want to go away, please please go away fluid filled sac!!  loving life (despite a really crappy boyfirend -who just happens to be an MD!) and hoping that someday i have enough energy to do more than work and sleep...

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  • RN2teach
    RN2teach Member Posts: 312
    edited March 2008

    Hi Laurel,

    I've found Taxol much more tolerable than AC--no fatigue to speak of, minimal stomach upset (mostly a little bloating in the evenings--not so bad if I don't eat anything after 5pm).

    The worst symptoms by far are bone and muscle pain. Be ready to take tylenol and you may need something stronger (my onco gave me a narcotic pain reliever which I take at bedtime when the pain hits). My onco told me to avoid ibuprofen (advil, motrin) and aspirin because Taxol can lower platelets--increases your risk of bleeding.

    After Taxol #1, I started having pain on the evening after chemo. The worst pain hit a day later and I wasn't pain-free again until the end of the first week post-chemo. Each day after day 3-4 was a little less painful. But, honestly, it was tolerable--I worked every day.

    I also had just a touch of neuropathy--started night after chemo and lasted just a couple of days--mostly numbness and tingling in fingers and just a little in toes.

    I had Taxol #2 yesterday. My blood work prior to chemo was good. I take neulasta the day after each treatment--just got back from getting that injection. So, waiting to see how T#2 treats me as far as side effects.

    I'll let you know how it goes!

    Hey there, Holly: congrats on being finished with your treatments. Best wishes on recovering your energy so that you can enjoy your life. Not sure what to say about the crappy bf, except it might be time for a change so that you CAN enjoy life, eh?! Good luck!

    Paula

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  • twink
    twink Member Posts: 1,574
    edited March 2008

    Just peeking in on my TN pals here... hi to the new girls (squids, Katrina, others).  It's so nice to read the success stories... 4 years out, 8 years out... I love it.  I spent the week worrying about a pain in my rib cage that seemed to be getting worse.  Ack.  It's gone now.  I'm not even three months out of treatment and every week I have something new to worry about.  I'd better get a grip on this or I'm going to make myself crazy.  Hugs girls.

    t

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  • Maekelly
    Maekelly Member Posts: 15
    edited March 2008

    Hi everyone,  had my ct and my onc said that the radiologist said the  spots in my liver were worse, but he said they looked unchanged to him.  I asked what it looked like in the liver and he described it as looking like "Buckshot".  He thinks we should go more by how I feel and my markers.  Last time 2 out 3 went down and I am really feeling good with a lot of energy.  I get my markers done on Tuesday, so we'll see.  I am on my 5th round of Xeloda.  I really need to learn more about Triple neg.  A little on the clueless side.  I really like to read all these stories.  It educates me.  Best to all.  Maekelly

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  • pennylane
    pennylane Member Posts: 177
    edited March 2008

    Hi twink, I remember having pain in my ribs a few months after rads...thought it was the worst, then read here that it is a very common problem from the rad treatments and indeed begins about 3-months after completion.  Hope this applies to you and you can have one less thing to worry about now!  Best wishes.....P

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  • twink
    twink Member Posts: 1,574
    edited March 2008

    Thank you Penny.  One less thing to worry about.

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  • Squids
    Squids Member Posts: 7
    edited April 2008

    Hi Twink! I'm sorry you're having the "frets"....I did too. Took me till I was securely past the 5-year mark before I felt like I could relax. To this day, I still get a teensy bit tense when it's onc appt time or I lose weight (even deliberately, go figure!) but I promise you, it gets betta. Very glad to see you're all done with Rx now.

    P.S. LOVE your name. :)

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  • wetcoast
    wetcoast Member Posts: 193
    edited April 2008

    Hi Paula,

    thanks for the info on the taxol. I would say I had a relatively easy time on ac, I feel guilty saying that because I know some girls have a really rough time. The taxol to be quite honest worries me as I am do to have my 1st tx on april 10 and due to run in Boston on the 21st. Not going to be any records but to do it. Neuropathy is of course a concern. I guess I will have to dig deep for some of those positive thoughts and wait and see. Have you heard anything about the benefits of vitamin b? How much decadron do you take? Sorry so many questions.

    Here is wishing you no major se and onto #3.

    tc laurel

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  • smithlme
    smithlme Member Posts: 1,322
    edited April 2008

    This tri-neg is NOT a happy camper. On March 28, 2007 I was diagnosed with IDC. On April 9 I had a unilateral Mastectomy. I had DD AC followed by Taxol, which ended August 16. I had TRAM flap recon on January 28 that failed. The following day I had to have emergency surgery to have the muscle amputated and the flap removed.

    Last week I had my first post Mast mammo. It was followed by another mammo and a biopsy. On Monday I was diagnosed with DCIS, just 7 1/2 months after chemo ended. I am having another Mastectomy on April 22, so that I, hopefully, will never have to go through this again.

    I was hoping to have my recon started at the time I had my Mastectomy, but my PS is not recommending it. He wants me to wait on the final pathology report so that I know that I'm ok, which is a huge worry for me. Also, since my body has been through so much, he wants me to allow it to heal. This will give me a better chance of good results with recon.

    Needless to say...I am a basket case. I need to get my head wrapped around this and keep moving forward. Three weeks ago I was given the green light to start working out again so I have been walking miles on my treadmill. I need to focus on staying healthy so I can get through my upcoming surgery. This journey has too many bumps!

    Linda

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