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Triple Negative Stage IV

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Comments

  • marywh
    marywh Member Posts: 1,433
    edited September 2013

    and I just finished a big piece of Peppridge Farm cake. I have been so tired this week.Im not sure if its from the chemo or low platlets. Hope it will be better over the weekend. Carolben, Im sorry for all you're going through.Im glad you stayed and are able to spend time enjoying your son. He sounds like a sweetie. dd is spending the night with me tonight. Her boyfreind is out of town and gs is with his dad, so its been nice.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited September 2013

    Girls.....enjoy you ice cream sundae & cake! My onc is always saying everything in moderation so treats are good..... I actually believe keeping your weight down is the way to go! Not that I have any medical qualifications.......lol

    Cancer sucks & I say enjoy life....:)



    (((Hugs)))



    Karen xxx

  • alilou7497
    alilou7497 Member Posts: 40
    edited September 2013

    Hi I'm new and glad someone directed me here.  Originally in 2011 was diagnosed ER+.  Was not was TN.  6 months after treatment was complete I was dx with mets.  Lung and liver.  One month later one lonely met in the brain which was zapped and now three months after my original mets dx I also have bone mets.  Have been on taxol/carbo for 1 1/2 months and feel much better than when I was diagnosed.  Onc planning Xgeva for the bone mets.  She's positive so I'm trying to stay positive.  But Lord knows no one deserves this.  Glad I found this thread because I was tired of not really having much in common with others that are hormonally ++.  

    thanks for the listen/read :)

    Lee

  • Adnerb
    Adnerb Member Posts: 727
    edited September 2013

    Lee,

    Sorry you are here but a warm welcome to you (with gentle hugs)!!!

    I have lung mets so I can't address what you are going through, but listen to this:  I happen to know a whole lot of women with bone mets who seem to be managing their disease!!!  I have a friend from Australia who has had bone mets for over 4 years.   I know 2 ladies in San Diego who have had bone mets for almost 10 years.   And these are just the people I personally know.

    So you are right in hanging in there and staying positive.

    How did you know that your pathology changed?  I am very curious because I have not had a biopsy since my 9-11-13 dx. but my doctor still thinks I have TNBC.

  • OBXK
    OBXK Member Posts: 689
    edited October 2013

    Lee - welcome! Sucks that you have to be here, but we will support you in anyway we can and help you find answers and maybe talk you off the ledge on days when you've had enough.

    I was ER + 10 years ago, New primary came back as TN 7 years later.



  • Carolben
    Carolben Member Posts: 265
    edited October 2013

    Welcome Lee, you will find the best support here!

    Been awake and sore since 3am again. Not getting much sleep. Taking all the pain meds and trying to get enough food in to settle my stomach. Laying here eating yoghurt & pomegranates again/still! Have no appetite to speak of, so I say enjoy the cake, ice cream etc!! It's like you say Kazzie - all ok in moderation (not that I am a moderate kind of person) finding balance in my life has always been a challenge to me! Lol

    Going to go stand under a hot shower now, try to ease this aching body, and then it'll be back to bed again. At least the pain is more managed by the meds now, just want to try enjoy every minute of my last 3 days here, even if I am flat on my back!

  • alilou7497
    alilou7497 Member Posts: 40
    edited October 2013

    Carolben:  so sorry to hear you are in so much pain while away.  It sucks because you take this little moments to try and enjoy some time and hope you don't have to think about what you are going through and wala.....it doesn't work out that way.  A little prayer for you that the last three days be pain free and full of fun and love.  I'm glad that I found this site as well because I was getting a little nervous there.  Hope your shower makes you feel better.Laughing

    Lee

  • Adnerb
    Adnerb Member Posts: 727
    edited October 2013

    Carolben:   Are you being seen by a doctor while you are there?

    Lee:  How are you feeling today?

  • marywh
    marywh Member Posts: 1,433
    edited October 2013

    Lee, I have also run into quite a few people that have bone mets that they are managing well. I dont have them, close, as I have alot of mets to the chest wall, but they dont consider them bone mets. Have plenty of others to make up for them though. Liver, another primary in my right breast,with lymph involvement, and a small place on my lung that was there then gone and now back again. Im on Gemzar for 6 wks straight, hopefully that will knock it back down to stable anyway. Did have a frightening case of roid rage yesterday, driving home from chemo I was so mad, and it was all directed at my sweet men who havnt done anything but put up with this shit for 6 years. Came home and took a lorazipam and was a little better after that, but it was scary. Carolben, hope you are on the mend finally, Im glad you're with your son,even in these circumstances.

  • alilou7497
    alilou7497 Member Posts: 40
    edited October 2013

    Today I am feeling better thanks guys.  Just knowing there are people I can talk to.  Chemo is tomorrow but they cancelled it due to the fact that WBC are very low.  they also gave me some shots that I have to give myself 4 days prior to the ninth.  I'm not good at giving myself shots so I am a bit nervous.  I just wish my body would cooperate so that I can continue my treatment.  I also get nervous that something new will pop up if I'm not on it.  But....what are we going to do.  

    Anyway still blessed that I found eveyone here.

  • Deyla7641
    Deyla7641 Member Posts: 53
    edited October 2013

    Hi everyone. I am new to this thread and just want to introduce myself. I'm 33 married mom of 2 and was diagnosed last June stage III. I had my surgery in Dec and one month later diagnosed stage 4 with a bone met to T12. I was just in the hospital for ten days because I had a compression fracture to T12 and new lesion to L5 and the pain was just unbearable. They did kyphoplasty to the compressed vertebrate and I am currently having radiation to L5. Now I have a pinched sciatic nerve that I am dealing with. I am going to start PT so I'm hoping that will help. I have been triple negative from the start and it is just so depressing looking at the statistics but I just try and stay positive. What else can we do right? Thank you ladies for listening to me.



    Deyla

  • marywh
    marywh Member Posts: 1,433
    edited October 2013

    Oh welcome to all the newbies. This thread had been a little sproadic. Im so glad its finally picking up. Its nicwe to be able to discuss with people who truely understand our particular problems...

  • alilou7497
    alilou7497 Member Posts: 40
    edited October 2013

    Not the best club to belong to Deyla but we are here for each other.  I am a newbie as well and I was so glad when I found this thread.  Women that had a lot in common with me including this awful disease.  But together we can beat it. Postive positive positive.

    Lee

  • Teen22
    Teen22 Member Posts: 34
    edited October 2013

    ((Deyla))



    I was diagnosed Stage IV out of the gates with widespread bone mets. I had a compression fracture in T8 and Kyphoplasty was not even an option for me as tumor had eaten more than 50% of the disk. Cage was put in instead. Had emergency fusion of T6-T10 (rods/screws). Today, I started rads to my spine (T3 to T10) to sterilize the spine from microscopic cancer cells. Will your T12 be radiated after kyphoplasty? You might want to check RO about this.



    My BC here sisters have helped me quite a bit after my initial diagnosis (just 2 months ago). Guaranteed, they will help you too! Feel free to PM me with any questions. It is my turn to give back....

  • OBXK
    OBXK Member Posts: 689
    edited October 2013

    Welcome Deyla! I hope the PT helps you find some relief.



    Carolben - Is there some type of liquid nutrition you could try? Something like Ensure or Boost? So glad the pain meds are kicking in - how long is your flight home?

    Enjoy your boy. Good juju your way.



    Hugs to all!!!







  • surfdreams
    surfdreams Member Posts: 179
    edited October 2013

    Yes = Welcome to the new girls on the block. I'm sorry you have a reason to have found yourself in this corner of the neighborhood, but good people and tons of good support and information will be found on these threads.

  • Deyla7641
    Deyla7641 Member Posts: 53
    edited October 2013

    Thank you for the warm welcome everyone. Sad any of us have to be here.



    Teen22 I already had radiation to T12 back in March. They said that's what caused me to have the compression fracture.



    Deyla

  • stride
    stride Member Posts: 151
    edited October 2013

    I have been on the boards for awhile, but am new to this thread. Was diagnosed with widespread mets in August. I started carboplatin/gemzar and completed whole brain radiation. It was difficult doing chemo and WBR at the same time, but doable. The cancer appears to be a mixed type--some tumors are moderately PR+ and some tumors are TN.

    I am in my third cycle of carbo/gemzar, and will have a follow-up CT scan in a couple of weeks. I know it has been effective on a tumor in my neck muscle, which was quite painful before. And I also suspect it has knocked back my lung tumors. I don't think it has touched the bones, and I'm not sure about the liver and other organs. Chemo has not stopped the development of new, palpable tumors on my chest, back and abdomen.

    My prognosis is poor, and I have accepted that (most of the time, anyway). My goal is to live a relatively symptom-free and side-effect-free life for as long as I can. I have been quite lucky that the effects of the cancer have been fairly minimal so far. I was hiking and kayaking with my husband only the week before the CT scan that showed the metastases.

    I hope that gives people some hope--even if cancer becomes ridiculously widespread, it may still be possible to live a good quality of life. Of course I had the advantage of having no clue that the cancer had spread all over. But I think it shows that at least part of this fight is mind over matter. I did not know I was supposed to be too sick to hike and kayak.

    Deyla, how did the radiation in your T12 cause a compression fracture? I didn't know that could happen. Does the bone compress to fill in the space where the tumor was? I had radiation to a vertebra in my neck at the same time as whole brain radiation. 

  • Adnerb
    Adnerb Member Posts: 727
    edited October 2013

    Welcome, welcome!   I am fairly new to this thread, but very oldie otherwise.  I just wanted to share that the nosurrender forum has a few interesting topics under TNBC.

    Hugs-

    Brenda

  • marywh
    marywh Member Posts: 1,433
    edited October 2013

    Anybody else have problems with Gemzar? It is truely kicking my butt. Going from steroid rage for 2 days to not being able to do Anything without taking a nap days 3 and 4 and 5 HaveSat. and Sun. to recup and then back at it with no break at all for 6 weeks. This is only my 2nd week, hoping it will get better as time goes on-but I heard Gemzar is relatively easy?Not! Ok enough ranting. hugs to everybody.

  • Adnerb
    Adnerb Member Posts: 727
    edited October 2013

    Mary,

    I had Gemzar with carboplatin 2 weeks ago, last week and if my rbc permits, this Friday.  Compared to TC or AC I am thinking Gemzar is doable, but then everyone is a thumbprint!  You are reacting differently because you are unique, as am I.  Are you getting it every week like I am?  What do you mean by no break?  I'm doing 3 weeks on, 1 week off.

    Hang in there-

    Brenda

  • marywh
    marywh Member Posts: 1,433
    edited October 2013

    six weeks straight with no break in between infusions. Mets were kind of out of control and I had a 3 week period where I was fighting insurance companyYell. This is doable, just not able to do the things I want to do..I drive alot for my work and cant pull over everytime I need to take a nap. I heard ritalin was a option but my mo wont go for it. Hoping it will straighten itself out. Im tired of feeling like Im 85.

  • Adnerb
    Adnerb Member Posts: 727
    edited October 2013

    Mary,

    What kind of work do you do?   You are making me feel like a wimp!   I have not gone to work since my dx.  I know I will have to go back and do something somehow, but right now I can't see myself doing chemo and going to work!!!  Now I totally understand you complaining about 6 weeks straight and no breaks.   Goodness gracious!!!   Hugs and more hugs...

    Brenda

  • Carolben
    Carolben Member Posts: 265
    edited October 2013

    Thanks for support & kind words everybody, and welcome to all newbies!

    I saw a rushed, offhand doctor at the ER, who was not very helpful, then a female doc came around & sorted out the pain meds.

    Karen, I drink ensure twice a day at home, my son has just been making small amounts of food for me about 10 times a day!! Stuff like soup is easiest.

    OMG, the bone mets stories, Stride & Deyla, my biggest fears of the moment in black & white!! Now 1 side of my neck is really painful, sure it's just cos I've been holding my body funny, trying to find comfortable positions. And of course part of my head is saying 'bone mets'...
    Mary, I'm so sorry you're having a tough time with Gemzar - do hope it becomes easier. Funny how we all react differently to the chemos. And you're still working!!! You're amazing!!!
    Have been able to enjoy being here more, now that the pain is more controlled. Leaving tomorrow morning early- have to check in at 02h30. Will take pain meds & a sleeping pill when I get on the plane. Land in Johannesburg at 2pm and my sister will fetch me. Her daughter is a physician so she will write me a script for the usual pain pills, these ones make me feel horrible. I may change my flight to go home earlier, will see, just want to be back in my home, to speak to my onc, see my physio, be in my safety zone again. This sucks, I've always been a good traveller.
    A friend dyed my eyebrows - yay to having them again, then lying here I remembered that I'll be back on chemo soon & will loose all my hair again, and my stomach dropped, it's been really lovely having a chemo break!
    Am dreading saying goodbye to my son, he has been an absolute star. He will be coming to me for Christmas, so I'll hang on to that!
    Love & strength all round

  • Anko66
    Anko66 Member Posts: 30
    edited October 2013

    Hello ladies, just checking in, it's been a while.  After over a year on Taxol, I had progression in my liver so onto FEC now.  This will be the third time to lose my hair but it kind of feels like the least of my problems as the side effects/medical issues are fairly mounting up now.  Having said that, I am still living a fairly normal and active life and I am so thankful for that.

    Wishing you all the best.

  • alilou7497
    alilou7497 Member Posts: 40
    edited October 2013

    Hola ladies:

    Carolben - so good to know you are feeling a bit better.  Hope you get to your pain meds soon.

    Mary - I know how you feel about chemo and work.  I'm also working, I'm a single parent with a 16 year old I really didn't have a choice.  I am lucky that my employer has been supportive about this entire situation and understands my chemo day or my mental health day.  He doesn't even dock my pay.  I took off a month and when I got back he told me "this is a forever situation and we are here with you forever, don't play hero.  If you don't feel well you go home and you tell us so we can send you in a cab"  Only once did not a need that offer but I'm glad it was made.  Two days ago he just came and hugged me without saying anything.  

    At first it was hard  because I live Bronx, New York and my job is by Ground Zero in Manhattan which is about 1 1/2 hours by train.  Its tiring to get here and back home but while you are breathing life goes on and things have to get done.  I just thank God that he has given me the strength to do it.  Plus being at work is much easier than being at home....home makes me feel sorry for myself and then depressed and then morbidity sets in.  The I'm going to die syndrome.  So I rather just try and keep busy.  Plus it makes my son feel better, like I'm going to make it.

    The bone mets have me nervous.  I have superficial bone mets on my femur and tibia and when I walk that leg becomes stiff and tired and I tend to drag it.  do you guys think that's from the Mets?

    I am on taxol and carbo.  The side effects are minimal except for that one day after the second infusion (3 weeks and 1 week off) when I get depressed and tired and I cry over anything.

    I haven't had a scan since I started the chemo session #6 will be next Wednesday.  How long does it take before they scan you after you start?  I feel like its working because my urine (sorry) is back to normal color. (although I don't know if that means anything) and my breathing is basically back to normal so I am assuming the lung mets have resolved somehow but I don't know anything for sure.

    In any event thanks for being here and I am here for anyone that needs to talk.

  • marywh
    marywh Member Posts: 1,433
    edited October 2013

    My mo scans every 3 months. As for working, we own a painting business. I dont paint anymore which I dearly miss, but I do the estimates, so its not too hard a job, just alot of driving.

  • OBXK
    OBXK Member Posts: 689
    edited October 2013


    Welcome New ladies!


    Mary - ask to have your steroids deduced. That really helped me. So did reduction of neulasta. I also asked and was given Ritalin. I use it on days that I really need to get out of bed.


    Carolben - I hope you had an uneventful trip home, and are enjoying being back in your safe zone. Glad you have the holidays to look forward to. I find I need something to look forward to.

  • marywh
    marywh Member Posts: 1,433
    edited October 2013


    I asked for Ritalin last week, mo wouldn't go for it. I have no idea why. Thursday was my worst day, I managed to have a decent week-end.I just hope I can keep it up for 4 more weeks. I need to take some time off after that, ds is getting married Nov. 9th, so I'd like to take at least 2 weeks off if possible.

  • kathyrnn
    kathyrnn Member Posts: 366
    edited October 2013


    Karen - I've been off the board for awhile because my Mom was in the hospital gravely ill. I'm so pleased to find out you're in the trial and doing the best possible ((HUG))

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