Stage IV and Scared

Options
celticsgirl143
celticsgirl143 Member Posts: 30
edited June 2014 in Triple-Negative Breast Cancer

I just finished up my 6 treatments of chemo and was about to start my radiation and they told me that the chemo didn't work. My cancer was stage 2 and I had a bilateral masectomy and lymphnode dissection, now it is in my lung and lymphnodes. it was growing this whole time. Anyone out there that has ever survived this? I will look on the stage IV board but my doctor said stage IV triple negative patients don't ever get better, I'm just seeing if any of you have. Thanks

· Share on FacebookShare on Twitter
«1

Comments

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited January 2011

    Do go to the stage iv board - I know you are scared but hang in there and for sure don't count yourself out - and any doc that makes that statement would have me looking for another doc...just sayin'

    Sorry you have to join us but the stage iv cruise ship isn't full of any fools and the knowledge and info and support and encouragement you will find is nothing short of amazing!

    Hugs and best wished...LowRider

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited January 2011

    yeah I am thinking about another doctor and what clinical trial to do and this is all so overwhelming

    · Share on FacebookShare on Twitter
  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2011

    Celticsgirl:

    Awww $hit - I am so sorry to hear what you are going through, but as lowrider told you - do not count yourself out -by any means.  I am sorry you have to relive all this over again, and if your doctor is going to treat you as if "you won't get better" - then hon, it's definitely time to move on and start fresh with someone a hell of a lot more optimistic than this  doc.  Sending all good thoughts your way.  Hang in there and continue to fight this beast.

    Hugs,

    Linda

    · Share on FacebookShare on Twitter
  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited January 2011

    Sorry you are joining the Stage IV club, but we're a great group of people even if no one wants to be there.  As my oncologist says, "there are lots of different things we can try".  Just because one chemo combo didn't work doesn't mean there isn't another one that won't.  I've had periods of NED (no evidence of disease) and feel like my quality of life is pretty good right now.  You need to find a more optimistic doctor.  Even though Stage IV is a chronic condition (you're never going to be healed), there are women who achieve and maintain good periods of stability.

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited January 2011

    thanks I think you girls are great and I am glad that I found this site. It's nice to see that you are doing well Cathy and you are 3 years out right? That gives me hope, since some research (and my dr) said I might only have months left. Sucks, but I'm glad I'm not alone in this even tho I hate that you all are fighting this and wish I could somehow make you healthy. I have two little kids that is why I'm so sad, two boys, one is 2 1/2 and the other 8 months. I hate this disease so much.

    · Share on FacebookShare on Twitter
  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited January 2011

    Sarah...to give you a bit of hope - when I was first dx'd, it showed on my clavical, lung, spine and pelvic area - after further testing, it was primarily in my spine - sprinkles everywhere and nothing showed up on the clavical.  I started treatment and the very first scan showed the lung completely resolved, no evidence of disease anywhere in the lungs.  Nothing on the clavical.  My mets was determined to be completely and only in the bone.  I had some healing and resolution in the spine but one stubborn lesion so we switched treatment.  And then when the Faslodex was FDA approved for a double dose, I got that - I just got the call yesterday that pretty much confirmed some of the uptake on the scans was arthritic (PET scans uptake to active cells and things other than cancer can be 'active cells'), the MRI showed 'overall, most lesions are less prominent that on the previous scan' and my tumor markers have held within a 4 point range - 102-106 since October - 16 months and 6 days from my mets dx, I am stable. 

    Triple neg is treated differently but with very positive outcomes as well.  Ignore the medical sites - its just a bunch of numbers - you are in a place with real people treating and living with stage iv bc - and girl...get a new oncologist - this guy of yours is not what you want.  Confidence in your treatment team is a big part of how well you do - and anyone that gives you a expiration date is an idiot - you are not a loaf of bread with an expiration date stamped on you.

    There are bunches of treatments to try - having one fail is only having one fail - I had one fail, next one, I achieved stable.  I will never stop treatment in some form or another but my quality of life is pretty good and the prognosis for potential years of living is good as well.

    Hugs to you...LowRider

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited February 2011

    thanks so much Lowrider, you have my love and prayers. Thanks for giving me hope!

    · Share on FacebookShare on Twitter
  • KSkier
    KSkier Member Posts: 467
    edited February 2011

    Hope coming from here too.  I, like Cathy, have a dr. who insists she's got an arsenal of treatments to try when the one I am on stops working.  I too have mets to lungs and have been living with monthly chemo since August 2009. (That's a full year following the first go around).  I also have two kids: 2 and a half and six.  With treatment, "months" isn't realistic.  From your name can I assume you are in Boston area?  Boston has some of the best hospitals; I am so thankful for the friend who pushed me to go to Dana Farber.   I spend most of my time on the stage IV page; sorry to see you there but we'll be looking out for you! 

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited February 2011

    Hi KSkier,

    Who is your doctor at Dana Farber if you don't mind me asking? I went there for a second opinion because yes I am from the Boston area although I live in Philadelphia now. I love Dana Farber but I'm not sure i want to move from PA right now. It's complicated with my husband leaving his job and our friends and family here. The doctor I saw there was really nice and everything and explained some trials I can be on. There are many I can't be on because I had lymphoma as a child and they don't take you if you have previous cancers. But he did have some suggestions and I decided on the Parp study which I could do either at Lahey Clinic in Mass or at U Penn in Philly. So I am doing it at U Penn although if things get worse i think I will be joining you at Dana. I'm so happy that you have fought this a year and a half! Good for you and you give me a lot of hope. Hugs those kids for me. I have a 2 and a half year old too his name is Eric, it is such a fun age. I don't know about you but I'm so thankful for the happiness my kids bring me, it helps me to forget about this cancer stuff long enough to enjoy my life. 

    Love

    Sarah

    · Share on FacebookShare on Twitter
  • KSkier
    KSkier Member Posts: 467
    edited February 2011

    The children are a blessing and a curse in that yes, they do give so much unconditional joy and love, but at the same time there are days that we look at them and just want to cry when we consider the possibility of not being here for them.  So to quote someone else on stage IV page, I cram as much living into each day as possible.  I see Dr. Toleney @ DF and have no complaints.  I too am a candidate for Parps and Dr. T is working hard to keep me on waiting lists for that when we need it. 

    · Share on FacebookShare on Twitter
  • lindaa
    lindaa Member Posts: 119
    edited February 2011

    I am with you.  i am trip neg and recently told I have spot on rib, plus a new node in neck and this happened while I was on chemo #2.  I am now on lxempra/xeloda/zometa.  I hope we both get the combo that works.  They say trip neg respond well to chemo - hope they are right!  Also, glad you had initial surgery.  I have not been so lucky yet. 

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited February 2011

    KSkier, you are right, after I found out it was in my lungs I cried every time i looked at them I swear for like 2 weeks.  I still do occasionally. I hate the idea of hurting them and leaving them with no mother. How crappy is that, to grow up without a mom. I hate it so much. But then I realized, hey, there is no reason why I can't still get better. Or put it in check and live on treatment for 20 years. There is a cure out there for this, someone just needs to find a targeted therapy, like they did with lymphoma, and there are so many things they are trying, we just have to hang in there a few years until they get an answer right!

    I did go to Barnes and Noble and get 2 really beautiful journals, and I write to my kids in it, I also am going to buy them gifts for special moments in their life so that they know I was thinking of them and hey, when I make it to that day I will give it to them myself. Because you can't lose this battle when there is still hope, and listen we are both getting up everyday. But you are right that I feel I have a new respect and value for every day that I get. That is such a precious gift to know how to appreciate the beauty in our lives. If there is a gift i'd love to give, it would be to teach my children that, so that they will appreciate every moment of their lives too.

    The Parp trial needs a waitlist, but the study being held at Lahey Clinic doesn't, you just have to call them if you need to start the drug. I hope what you are works and you never need to. Thanks for the doctor recommendation too, If I come to Dana Farber in the future I will need a good one to see so I really appreciate that. 

    Lindaa I'm so sorry, it sucks to know that it has spread. Hang in there and maybe this combo will be the one! We can kick this cancer's ass i know we can. I love imagining the chemo going in there and kicking it's ass. I hope it does for all of us.

    · Share on FacebookShare on Twitter
  • lindaa
    lindaa Member Posts: 119
    edited February 2011

    Celtic, thanks for this tip on the parp.  I go to dana farber now, and they have a wait list.  How can I get more info on the lahey.  I almost went there too, they were on my list as I switching oncs, because my first onc wasn't concerned about my progression and actually kept me on the same treatment even though it was apparent it had stopped working.  I like my onc at dana and don't want to switch again, I wonder if I can get the parp at lahey while still going to dana for regular? 

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited February 2011

    Hey lindaa,

    here is the contact info on the Lahey Website

    here is the link

    http://www.lahey.org/Education_and_Research/Research/Clinical_Trials/By_Primary_Trial/Clinical_Trials_-_Breast_cancer.aspx

    AN OPEN-LABEL, EXPANDED ACCESS PROTOCOL OF BSI-201 IN COMBINATION WITH GEMCITABINE/CARBOPLATIN IN PATIENTS WITH ER-,PR- AND HER2- NEGATIVE METASTATIC BREAST CANCER. The purpose of this study is to provide iniparib in combination with chemotherapy (gemcitabine and carboplatin) to eligible patients with triple negative breast cancer and to assess the safety and side effects. Principal Investigator:
    Corrine Zarwan, MD

    For more information contact Kori D. Hesse, , study coordinator, at (781) 744-3071

    BSI 201 is the parp inhibitor, if this info doesn't work for you (hopefully it is current), let me know and I will ask my doctor for the right info, since I am on the same study, just the philadelphia location of it. They did not let me keep doing my chemo at the location I had been doing it, they moved me to the hosipital where the study is, so you will probably have everything at Lahey.  And my onc kept me on the same tratment too when it stopped working, I am not very happy about that wither. wtf.

    · Share on FacebookShare on Twitter
  • lindaa
    lindaa Member Posts: 119
    edited February 2011

    Thanks for info.  i called but have not heard back.  I think if they can get it then dana shouldn't be too far behind. I don't want  to switch right now.  I think its crazy how sick ppl have to cris-cross the country looking for the right treatment.  Like right now rhode island hosp and only 3 or 4 others have hyperthermia treatment, which has been avail in mexico and germany for years.  So again, if you need that treatment, you have to go there.  Nuts. 

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited February 2011

    Wow that is unbelievable, you would think that doctors would communicate more with each other!

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited February 2011

    So they took me off the parp trial, apparently it isn't effective enough to be used as a 1st line of treatment at stage four. I don't know whether to be disappointed or think that it doesn't work so I should be happy? I don't know but now I am lookng for something else

    · Share on FacebookShare on Twitter
  • lindaa
    lindaa Member Posts: 119
    edited March 2011

    Hi Celtic, what did they move you to?  I am bouncing around with this  too.  I am just one of those rare ones where little works.  I am now moving off xlempra, which has done well for many on here, and next is a trial with gemcitabine and MK1775 Wee1 inhibitor.  like the parp, but a different enzyme.  I have to be off chemo for 3 to 4 weeks before starting, and since my disease moves so fast that makes me very nervous. 

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited March 2011

    They put me on ixempra too, and I should be starting zeloda with it in a few days. I have only had one treatment and it sucked. I had really bad bone pain for a week and a half....two weeks really but the last few days of the second week I could do without the pain killers but it was so nasty that I still had pain while on the oxycodone.

    Taxotere wasn't that bad at all compared to this. I'm sorry to complain I know it doesn't fix anything, but did that happen to you on ixempra too? How long were you on it? and it didn't work at all? Did they combine it with zeloda?My tumor hasn't really responded at all to anything, I mean the only chemo I had was the Tazotere and Cytoxin and it spread to my lungs while I was still being treated.

    Here is one thing that may or may not be helpful. I was off chemo too for about a month and it scared me. I read a lot about sugar and how it effects cancer, and dairy also, and how eating vegetables, fruit, and lowering your calories can make it hard for the tumor to grow, so I changed my diet, ate nothing but veggies that whole month and even now, no meat except fish once and awhile and egg whites maybe once a week. I ate some organic cereal and no dairy no red meat, no sugar, Well I lost 13 pds and my tumor when I had the scan actually shrank a little, only 2mm but still it shrank and I wasn't on any treatment. So hey it was either my diet change, all my praying, or both....I'm thinking both. But in any case, what do you really have to lose right? As long as you take vitamins and have beans and such for protein? Just a thought, but I will keep you in the prayers too.

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited March 2011

    oh and I have heard good things about that trial you are going on, I am thinking that is next for me, will you tell me how it works for you, I hope it kicks your  cancer's ass =)

    · Share on FacebookShare on Twitter
  • jloon
    jloon Member Posts: 30
    edited March 2011

    I just finished my second round of chemo - Gemcitibine, Cisplatin and Avastin - PET scan shows that all mets have disappeared. There is always hope.

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited March 2011

    wow, I will keep that in mind jloon, if what I'm on doesn't work thanks! I hope it's gone forever!!

    · Share on FacebookShare on Twitter
  • lindaa
    lindaa Member Posts: 119
    edited March 2011

    Thanks jloon, that sounds amazing!  I am so happy for you.  I think this study will be either gem or cisplatin but not both.   i asked for both, I'm like, throw it at me already!

     Thanks celtic for the response.  You are right, I do need to try to eat better.  I should use this unexpected chemo break for a time to detox and prepare myself for the next phase.  I bought a juicer a while back and have used it twice.  I am such a meat/potatoes type that it is so hard for me.  I am looking at some shakes right now that I can try.  Maybe those green drinks.  I like a good salad, and some fruit, but will struggle going all out.  I know I need to try though because I have little else - except prayer and meditation.  I did pray my heart out the morning the onc called me.  I asked to heal me already and that I wouldn't bring it up again.  To please guide my doctors and treatments. Then 2 hours later the phone rang with this study.  This is a very scary leap for me to go so long without chemo.  We were dx around the same time, June, and I have more cancer in me now than when I started.  I am happy you got your surgery though.  I have not gotten things stable enough for that which is a big part of my problem.  

    · Share on FacebookShare on Twitter
  • chainsawz
    chainsawz Member Posts: 3,473
    edited March 2011

    I am her2+, but I have a chemo buddy who is triple negative with lung mets.  She was dx the beginning of 2008 and I was in the summer of 2008 so she is over 3 years out now.  She had very large lung masses, but they responded well to chemo and disappeared.  Avastin\taxol kept them at bay until recently, when she got another lung nodule.  She went to the same radiation oncologist who is zapping my lung nodules with SRBT.  Her lungs are now clear again and she is on abraxane which she tolerates very well.

    There is lots of life to live.  No two stories here are exactly alike so no one can really predict how long each of us have....I'm damned sure going for another 30+ years!!  You are not alone :>

    · Share on FacebookShare on Twitter
  • lindaa
    lindaa Member Posts: 119
    edited March 2011

    As for lxempra, I was very tired and a little achey.  I did (and still do) feel a little pinch here and there on bones but nothing that requires pain meds.  Of course every time I feel something I think its spreading again!  It is what it is for me at this point.  I have thrown this one out to the universe.  It will either work, it will claim me before its over. 

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited March 2011

    Chainsawz I am a little confused because they said they couldn't radiate my lungs. I'm going to ask my oncologist why not now, because there was so much going on when I asked her originally I don't even remember the reason why not. Hmmmmm it seems like a lot of people have good luck with Avastin, I'm so scared of it because of the side effects, maybe i should just try it. I'm so happy for your friend, good for her!!

    Lindaa,

    God can do anything, and I would suggest asking as many times as you want! Visualize your cancer being destroyed, and hey we don't have much control over any of it right, all you have control over is what you eat and how you excercise. You can do it!! Just be determined! Starve that cancer!! No sugar!! It feels good to imagine you are starving  it mentally and physically. 

    Sorry I hope you don't think I'm being bossy, I am just cheering in your corner. =) I don't think it is a coincidence that you got a call about this trial right after that prayer. Hang in there love!

    · Share on FacebookShare on Twitter
  • lindaa
    lindaa Member Posts: 119
    edited March 2011

    You are not bossy and I need all of the pushing I can get.  DH and I juiced today and made a big mess - splashed all over upper cabinets, but we are learning.  We made a carrot one and a broccoli one cut with some fruit.  They were very tolerable. 

    I also feel it is much more than a coicidence to get the call just after prayer.  I love to watch Joseph Prince and he always says that when you are in touch with God the right things will just come to you.  I have experienced many, many times in my life where this is so true. 

    Just recently I went out to dinner with family and was seated next to a much older couple.  We were all going to a memorial service the next day for a 44 yr BC woman leaving 2 young daughters and DH, so it was a somber evening.  As i was leaving the woman patted me on the back and said, 'me too, 25 years ago today.'  I believe that was also much more than a coinidence.  It was a big place and I had never been there before, going out was a last minute thing, and that couple could have been seated anywhere.  It not only brought me comfort, but was a reminder that for every one we lose, there are many more long-term survivors out there. 

    · Share on FacebookShare on Twitter
  • celticsgirl143
    celticsgirl143 Member Posts: 30
    edited March 2011

    Yay Juicer!!! Good for you! I love fresh juice, it is so much better than the sugary bottled stuff. Keep up the good work! And  I had a similar experience, I went to a healing mass at church and at the end they give you blessings, and everyone waits in a line and then when it is their turn they go to the available couple to recieve their blessing, it just so happens that the woman giving my blessing had breast cancer years ago, she patted her flat chest and told me she is fine now. Her husband said that worrying was it's own kind of cancer and that I should have faith and realize that every day is a gift. He was so right. I needed to hear it because I have had a lot of pain in my ribs the past week and I'm thinking it probably has spread there. I still have faith though.

    · Share on FacebookShare on Twitter
  • lindaa
    lindaa Member Posts: 119
    edited April 2011

    Well, difficult to say how i'm doing.  I have pleural effusions now, and got some kind of infection so I am back on the vancomyiacin. i'ne been in/out of hospitals for past 2 weeks.  I didn't make it through my wait period without picking a few new buggers along the way.  It is what it is.  Very weak right now.  My lungs are looking better.  I've had 2 treatments of the gem/mk1775.  very naseuous and my wbc are high (infection) and my rbc is low.  I'm just plowing through as best as I can.

    · Share on FacebookShare on Twitter
  • lindaa
    lindaa Member Posts: 119
    edited April 2011

    My new trial with this mk-1775 drug was a bust.  Taken with Gemzar, but it kept flattening my blood platlets.  So between waiting period to start trial and missed treatments so I could recover I now have plueral effusions and other spots.  My doctors now give me no hope.  I haven't even tried all the chemos yet.  I thought dana farber would be more aggressive but now I am looking for a new onc again.  Maybe md anderson.

    · Share on FacebookShare on Twitter

Categories