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Triple Negative Stage IV

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  • OBXK
    OBXK Member Posts: 689
    edited June 2013

    Anko - ask you oncologist, if you can reduce the dosage of the shots. I had neulasta shots that slayed me. I was able to get it reduced by half. I also found Tylenol better than my Rx pain meds for the neulasta bone pain. So sorry you are having such a tough go. Good thoughts your way...

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

    Hi everybody, just came to rant a little. I had my ekg last monday, the injection fractoin was off again, so I am not able to do halaven anymore. MO has been on vacation for 10 days, but PA ordered an echo, which came back pretty good although they noticed some chf.Not too bad though. In the meantime have been off chemo for 2 weeks and these tumors on my incision are getting bigger by the day. Frankly its scaring the hell out of me.If those are growing fast, whats it doing to the rest of my body? When MO gets back and decides my treatment, then I have to wait for insurance to approve it. Thats like pulling teeth.Ah well guess Ill just live on ativan and sleeping pills for the next few days....

  • Anko66
    Anko66 Member Posts: 30
    edited June 2013

    Jennifer, thanks for the post - yes, I should be putting on nail polish and until a few days ago I was and then I took it off, and then things started to go wrong.

    As for the neupogen it wasn't so much the pain, it just made me feel crappy all over - nauseous, weak, shaky.   Sometimes though it's difficult to distinguish what is what causing what.

    Going to get that nail polish on and head out for chemo today.  Going to push on for another cycle.  Scans at the end of the month which is giving me something to aim for.

    Mary - that sounds tough.  I hope they get something sorted out for you soon.

  • Gabpj
    Gabpj Member Posts: 46
    edited June 2013

    Mary - it seems cruel to leave you waiting like this (joys of cancer I suppose). Is there any way to get in contact with the PA, explain your concerns about your condition (lumps growing quickly) and insurance so they can at least get the paperwork started. He has obviously been in contact with the MO and you had discussed alternative treatment before he went away so he probably knows what the next step of your treatment is.



    On a positive note, you said that the last scan showed your internal tumours were stable so hopefully they are not acting as aggressively as your chest recurrence.



    Probably a silly question but have you seen a cardiologist about your heart issues? In my ignorance, I don't know if this is a side effect of Halaven or a pre existing condition that has been made worse by chemo.



    Sometimes I am thankful to live in Australia and not have to deal with these insurance company issues. If it is approved for breast cancer in Australia, it is covered whether you are a public or a private patient.



    Anko - I am glad that Jennifer could give you advice. I am on taxol (with carboplatin) but have only done 8 treatments so have not got to the annoying part yet. It was a good reminder that I have to start concentrating on my nails ( I think I have been too concentrated on saving what I could of my hair to look normal under a baseball cap). Good luck with the scans and I hope that the results make the nail damage worth it.



  • sugarmagzz
    sugarmagzz Member Posts: 8
    edited June 2013

    Hi everyone - I posted awhile back and finally finished reading the whole thread. I feel like I know you all, thank you for sharing your stories and for being here! Here's mine:

    I am 34, was dx 2 days after this last Christmas with TNBC, was initially thought to be stage II but since I found the lump in Nov 2011 while breastfeeding my 1 month old son I just knew it was going to turn out to be bad. I was right, after CT scan and port placement on New Years Eve a few days later I was told it had spread to liver, lungs, and lymph nodes and I was stage IV. I had been seeking consultation on the lump for nearly 1 year at that point and they had missed the cancer the entire time. My cancer is very aggressive, grade 3, and obviously with TNBC I don't have to tell you anymore about prognosis. I am BRCA 1+, my son is now 20 months old.

    I had 4 rounds of A/C which I did not handle well, was very sick and when my MO wanted to do 2 more rounds I sought a second opinion at Dana Farber in Boston. I had initially met with the MO there at dx but had already started tx at the other hospital. She disagreed with continuing AC as scans revealed no real change - stable, but no shrinkage, and with the risk of heart damage she recommended going to 12 weekly taxol instead. Then we found a clinicial trial that I would qualify for, began testing for that and started in April. The study is for a PARP inhibitor called Velaparib and I take it for 7 days along with carboplatin/taxol at each cycle which is every 3 weeks. I handle this much better, although the neuropathy, pain from taxol, and fatigue I do struggle with. I have my first scan on Friday, the MO does not expect to see any shrinking based on the fact that my breast tumor is unchanged in size. I am so afraid to see this as I fear that nothing will work for me.

    I know I have only begun with tx options and thanks to this thread I can see that many of you have found ones that have worked to buy some years which gives me hope. I don't want to die before my son can have memories of me, that is truly the most devastating part of this for me. I want him to know and feel my love before I go.

    I started a blog recently, mostly as self-therapy, but also for friends and family to try to understand what I'm going through. The website is stellablue dot net if anyone would like to follow me. I hope to get to know you ladies more and I wish everyone the best. Hoping for miracles for all of us.

    ~Cheri

  • Gabpj
    Gabpj Member Posts: 46
    edited June 2013

    Cheri - good luck with your scan on Friday. I am on a similar regime to you ( carboplatin /taxol but without the parp)



    I had a 6 week scan last week. The MO said at 6 weeks, good news would be stability- The results showed that the mets to the lung had reduced 20%.



    So, even though we all hope for miraculous regression, stability is not a bad thing.



    I also have 2 cancerous lumps in my armpit which I can feel - they are not lymph nodes but subcutaneous lumps that formed after axilliary clearance. I spend way too much time examining their size.



    Please keep us updated with your scan results. I will keep you and your family in my thoughts/prayers.



    I have another 12 weeks before my next scanxiety.

  • OBXK
    OBXK Member Posts: 689
    edited June 2013

    Cheri - my heart, breaks for yours.I am so sorry you have to go through this. NOT FAIR!

    I hope they find just the right cocktail for you.

    I've been through gemzar/carbo ( it worked the first three months) and am now on Xeloda. I hope it's working, because I have very mild side effects and best part ... it's a pill!



    In the mean time - enjoy that baby! Take lots of photos together. Be well...

  • Carolben
    Carolben Member Posts: 265
    edited June 2013

    Welcome Loveforlife, sorry you need to be here!  Good luck with the carboplatin/gamzar, hope it will be easy on you but do the job!

    Gabpj, how were your scan results?  Hope you got some good news.  I gave up and just had to shave off the rest of my patchy hair.  It's winter here now, and really cold with no hair - wearing beanies and hats.  This is my 2nd successive bald winter, dammit!

    Marywh, I'm so sorry to hear about your progression, hope your ekg was ok?

    Anko66 - the nails, yes.  I've been wearing thick, dark nail polish on hands and toes since I started the Taxol.  My nails are in terrible condition, splitting, cracking and dry, but not lifting off the bed.  I'm also far too woosy to put my hands and feet on ice while having chemo, but the woman who told me about the nail polish did that.  I had a dream last night that one of my nails lifted off, that's wierd.  Ouch, it sounds painful....

    Is there anything one can do for the peripheral neuritis?  My toes are worse than my fingers, and the chemo nurses say the only thing they know to try is anti-histamine cream, which hasn't made a difference. 

    Went to a yoga class this morning and it's my week off chemo, so no steroids, and it was a stretch (literally and figuratively), the steroids give me a physical boost for 2 days.  I also dont like the feeling, especially cos they make my head just go around in circles!  Then I have a busy head and a tired body that thinks it has oodles of energy - just nasty.

    My wbc was low and they didn't want to give me chemo on Tuesday, but I was keen (what a hero) so they gave me a lower dose.  Well, next time they say my count is too low and they dont want to do chemo I will totally agree with them not to - it knocked me flat for almost a week!  Just having a shower wore me out.

    Love to an amazing group of women

  • tortoise
    tortoise Member Posts: 17
    edited June 2013

    Cheri.  I know how terrifying it is with the kids.  Mine are 4 and 5 - I feel the same as you.

    I've mentioned this a few times already, but will do so again as I think it's the best way to add time to your prognosis.  Google 'caris life sciences' or 'caris target now'.  You need to send a biopsy to them, then they analyse in great detail the genetic make-up of your tumour, ie which genes have mutated, and, crucially, what those mutations are.  Based on those results they give you a 24 page report which will advise you which drugs are likely to work, and which are not.  I had it done (they flew my biopsy to Arizona from the UK!).  It costs c. £4k but in the end my insurance company agreed to pay).  I think it's so important when you're TN because you have limited drug options, and resistance is higher.  Anyway, they recommended a few drugs for me (ones that my onc would probably not have recommended next) which means that you don't waste valuable time on drugs which are not going to work, and you cut straight to the ones that will.  They even recommended a couple of melanoma drugs that they think will work better than the breast drugs.  And they recommend appropriate trials.  If yo can manage to get the money together, I thoroughly recommend it.  It's not fool-proof because it's very new technology, but it's pretty reliable.  Some doctors use it, but from what I gather, not many.  But this is exactly the way that cancer will be treated in years to come - i.e. medication targeted at your specific cancer, not just based on guesswork!  Anyway, have a look and see what you think. x     

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

    I finally heard from MOs office, heart issues they think are strictly from the Havalen,except for slight chf which Ive known about. Also had an echo last week that actually came out pretty good and the ejection fraction was back to normal, so I m on to evil Ixempra which Ive heard is not exactly a piece of cake. Sounds a bit like the side effects from neulasta, which I hated with a passion, along with taking steroids-yuck. Oh well hoping this is my majic bullet....

  • lotusblossom
    lotusblossom Member Posts: 21
    edited June 2013

    Cheri,

    I just wanted to let you know that my MO had to go through 5 different chemos before he found the one that worked for me.  Today is my 4 year anniversary with mets.  Last week I found out that CT shows 'almost complete resolution of metastases'.  So hang in there. Sometimes it takes some time to find the right chemo for TN.

  • surfdreams
    surfdreams Member Posts: 179
    edited June 2013

    Oh Lotusblossom! Share, Share! What treatments have you had?

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited June 2013

    Yes lotusblossom........please share your treatments & let us know what finally did work.

    Also, where are your mets?

    I am on Xeloda after trying 4 other chemos & finally had a scan which showed stable bone mets & shrinkage of one of my liver mets....yay!! That was after 5 rounds, had a scan after 3 rounds which showed progression in liver.....

    4 years......you give me hope :) 😜



    Karen x

  • OBXK
    OBXK Member Posts: 689
    edited June 2013

    Tumor markers on the rise, with Xeloda. Scan in three weeks. I don't even know what would be next, if this isn't working. I've already done carbo/gemzar.

    Group hug!

  • Gabpj
    Gabpj Member Posts: 46
    edited June 2013

    Carolben - I hope your red blood cells rise and you regain your energy. One good thing about being bald in winter is that we have a good excuse to wear beanies and other hats. I just hope I retain enough hair to poke out under the beanie to give the illusion I still have hair- I know it won't last for long



    Tortoise and surf dreams - glad to see you back on the thread.



    Lotus blossom - thanks for your inspiration



    Marywh - good luck with iexmpra



    Kezzie61 - I am glad xeloda is working for you and



    Obxk - I'm glad you have so much to look forward to in the coming month and I hope this distracts you from scanxiety. I have only just started to have tumour markers done and my oncologist made me promise I wouldn't get too hung up on them - fluctuations can come from so many things.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited June 2013

    Thanks gabpj.....it certainly is a relief to have something work, even it only gives a tiny glimmer of hope.....:)



    I too have only recently had any movement in my tumour markers albeit very little....I think they went from 30 something to 40 something & then back down to the 30's.

    There was no movement whatsoever when the mets were just in my bones.....so who knows how reliable they really are!!!



    (((Hugs))) Karen & hope the wait isn't too long & the results are much better than you are expecting :) x



    Karen xox

  • lotusblossom
    lotusblossom Member Posts: 21
    edited June 2013

    Surfdreams,

    I initially started with mets in my lungs, spleen , biliary tract, bones and lymph nodes. I was put on Gemzar/Xeloda and had some regression then stability. When I began to progress my MO put me on Caelyx, where I progressed again. Then he put me on Taxol, where I was stable for over a year, and then progressed. Finally, he put me on Navelbine. At first stable for 6 months, then HUGE regression, stable, then regression again! I have been on Navelbine for almost 2 years and now have only tiny lung nodules! It took a long time for me to get to this place where I finally feel like there is hope, but there it is!

  • surfdreams
    surfdreams Member Posts: 179
    edited June 2013

    Thanks to all the lovely ladies here for sharing your experience. I feel like we're at the mercy of our excellent Oncologists to know what to try after the next regression. It makes me feel better to know that there are still options out there for us Triple neg. girls when this one fails. For now..... I just received my CT results yesterday afternoon - first ones since starting on Gemzar/Carbo 3 months ago after my last progression. They appear to be STABLE! I'm so relieved! I put them off last month as I was going on vacation and didn't want bad news hanging over my head the whole time. Turns out- it would have been OK after all, but I didn't want to take that chance. Now I'm ready for another vacation to celebrate! (It's not going to happen, but I'm still ready - Ha!)

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited June 2013

    Oh thanks Lotusblossom.....I never dreamed that with triple neg mets I could still be around 4 years from diagnosis!!

    Your story is wonderful & gives lots of hope....:)



    Karen x

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited June 2013

    Surfdreams.....wonderful knews....:)

    Stable is good & you should celebrate with another holiday..lol

    Good luck with next round...



    Karen x

  • Gabpj
    Gabpj Member Posts: 46
    edited June 2013

    Thanks for sharing your journey, Lotus Blossom. The only thing that kept me sane between my stage iv diagnosis and first scan was the stories on this site of people good quality lives despite a stage iv diagnosis. When it is someone who is triple negative, it is especially special.



    Thank goodness, I found this site and didn't have to rely on depressing google searches.



    Surf dreams- It must be a relief to have good scans. You may be on to something - having a vacation before scans. I think that was Kazzie61's strategy too and she got stability as well. Lucky, I have a lot of mini breaks planned this year ( I have told kids that 2013 is the year of fun and that we will be doing things we would otherwise put off). Our last adventure was climbing the Sydney Harbour Bridge.

  • surfdreams
    surfdreams Member Posts: 179
    edited June 2013

    Thanks all! Sorry for my crowing, but I'm sooooooo relieved to be back to fairly stable. We all need vacations before scans - after scans  - during scans.....etc..... Wow! The Sydney Harbor Bridge!!! How awesome is that!?!

  • Anko66
    Anko66 Member Posts: 30
    edited June 2013

    Hello all, just checking in.  My symptoms keep changing by the day. I went ahead with chemo on Tuesday even though it was counter-intuitive - have been feeling really week and as I had posted a couple of days earlier I was upset about my nails and my increasing difficult with walking with the neuropathy.  Since I put the thick nail polish on I haven't felt a thing (thank you Jennifer if you're reading this).  Started to get a nasty sore throat on wed and yesterday was just floored with chills, body aching all over but amazingly no fever.  Feeling a bit better today and I have an appointment with my oncologist later.  And my new symptom - a series twinges of pain in my liver.  I'm doubtful that the taxol is working.  And my tumours markers are on the rise from 19 to 35.  Never a dull moment. 

  • Letselina
    Letselina Member Posts: 5
    edited June 2013

    Oh my reading these posts I am thinking I have a lot to learn. Newly diagnosed one week ago with triple negative Metastastic breast cancer with axillary lymph and lung nodes and bone metastisis of the right tibia.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited June 2013

    Letselina.....welcome!

    One step at a time & don't try to take too much in at once.

    Empower yourself with knowledge & have faith in your medical team.

    You will get lots of support from your new cyber friends....:)



    Karen xox

  • Gabpj
    Gabpj Member Posts: 46
    edited June 2013

    Letselina - I agree with Kazzie61. When I was first diagnosed stage iv ten weeks ago, I felt lost and hopeless but starting treatment helped and also this site helped me enormously as I saw so many brave women battling bravely against this terrible disease. Every day it gets easier to cope and I can honestly say that I have more happy moments than sad. I am learning to enjoy the little things more.



    What chemo are you starting?



    Anko- I hope you are feeling better and that the mo answered your queries.

  • surfdreams
    surfdreams Member Posts: 179
    edited June 2013

    Welcome to Letselina and to Gapbj. So sorry to be greeting you in this forum. Wish I was greeting you instead while meeting you doing something fun in your beautiful Australia! Kazzi says it all. It does get easier to put one foot in front of the other, though you'll still likely have your days (or weeks) when it still weighs you down. I have met a few Superwomen on this site who's spirits seem to be indominatable. I won't mention names as they may not agree with me, but you'll come to recognize them as you become more familiar with their posts on this site. They're my heroes. Don't be shy about asking your oncologist for medications to help with anxiety - even if it's something to take just as needed on those days when you need to "take the edge off". Come by  as often as you like/need and don't be afraid to post questions. There's so much wonderful advice and experience shared on these boards. Best wishes

  • Carolben
    Carolben Member Posts: 265
    edited June 2013

    Been trying to catch up with all the posts again - so happy for those who received good news. and so sorry for those that didn't.  Isn't it wierd, happiness is knowing your tumors have shrunk or have stabilized!  Hear hear Gabpj - let 2013 be the year of doing fun things!

    Started coughing and feeling fluey day before yesterday - spent most of yesterday with doctors, x-rays, blood test and ended up at a specialist physician.  It's so cool, I can call my oncology clinic where I'm getting treatment, tell them what's going on and they tell me what to do,.  Have a big lump just come up in my groin, am hoping it's just the infection.  Seeing my onc on Tuesday if my blood count is back up for chemo, he can take a look then.  So am on antibiotics (again) and bed rest.  At one stage they wanted to put me into hospital, but eventually said I can stay in bed at home.  I just hate being in hospitals, they are such lonely places.

    Thanks for the injection of hope, Lotusblossom, 4 years is a big wow!!

    Hang in there, Anko66.  This is a seriously scary journey, I too am so grateful to have you guys around to share experiences, hopes and fears, good news and bad!!

    Have now lost the little appetite that I had, am living on this milkshake meal supplement - everything tastes metallic, even water!  My friends bring me meals that they've made for me and see I have all I need, which is just so great of them.  I live alone so it can get tough at times and I'm so blessed to have such a great support system.

    I have 6 more infusions of Taxol to go.  It's been easy-ish till now.  They did say it'd be cumulative; have had 12 infusions already, so I shouldn't complain as I've tolerated it really well till now.  I have to say tho, that I'm really tired of all this treatment and this whole cancer story - In July I will have had 9 months of chemo in just over a year,  I feel like this disease snuck up and stole my life from me!  I have no idea of what is "normal" in my body anymore - my whole "normal" has gone - now it's all side effects and that's the new normal, I guess.

    It's cold and raining here, I'm in my bed with my electric blanket on and my 2 dogs next to me - so cosy!  And friends will pop in during the day.  So it's not all bad - so happy to be home in my bed and not in hospital!!!

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited June 2013

    Carolben.......(((hugs)))

    Take it easy & try enjoy the rest...:)

    Yes, life does take on a different 'normal', I've been on chemo constantly for 8 months now & somehow I think I'm just used to it now! There are many here that have been on chemo constantly for years so i can't really complain.

    I'm on Day 9 of my Xeloda cycle & having awful tummy issues, very tired & very dehydrated......drink, drink, drink (not alcohol obviously...)!!!

    Anko66.....hope you're starting to feel better, sending big luv n hugs.....

    Take care everyone.



    Karen xox

  • Carolben
    Carolben Member Posts: 265
    edited June 2013

    Oh what a difference to start feeling better again!  My blood counts are lower today, so no chemo tomorrow.  I'm grateful for that, I really feel like it'd just do me in right now.

    Thanks, Karen, chemo becomes a way of life, but sometimes I resent having to plan my life around it.  On the other hand I'm grateful we have chemo to throw at this monster, and more grateful that it is working.  I hate to whine and winge, but it has to come out somewhere - I can't always have the happy face on!  Also true that I'm really still a beginner to chemo, this is only my 2nd lot, so many of us have had so much more. 

    Just brings it home that we are in this for the long haul.  It's scary but I try not to get stuck there. 

    The sun is shining again after tons of rain, and that always helps to make things look brighter to me.

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