Triple Negative Stage IV
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Hello and happy Friday to everyone. I haven't seen many posts lately. How is everyone doing? I'm waiting to get into anothe oncologist for a second opinion or a trial. Where are you on the journey?
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Kaylynne, is the TNBC specialist in Dallas....Dr. O'shaunassay (sp). She is with Texas Oncology. I saw her back in July and she referred me to the trial I am on now. She is very good.
I had a scan this past Wednesday and will get results next week when I go in for my vaccine next Tuesday.
Huggs to all you lovely ladies.
Julie
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Texasrose53, Dr. Shannasey wouldn't see me. I am going to Dr. Blum on the 30th. She is in the same facility.There is a new trial out there for us. We will discuss at my appointment. There is a 50/50 chance I won't get the new drug because this is a phase III but I will get standard care chemo. Keeping my fingers crossed. I had my last Taxol treatment Oct 31st. Kind of worries me not doing anything to fight this crap in between.
What did you find out with your scans?
Kay
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Just got back from my oncologist. Good news, my lymph node mass is shrinking after 4 cycles of Xeloda! I guess all my suffering has been worth it. From one view of my CT scan, it went from 3.9 x 3.1 down to 3.3 x 2.1. the other view, down from 5.7 x 2.5 to 4.1 x 1.5. No new tumors appearing. So we're moving in the right direction! I've been plagued with diarrhea from the Xeloda this whole week, so he's having me hold off on a starting a new cycle until it resolves. Then we're switching to a 7 day on 7 days off dosing schedule, which will hopefully be easier on my poor digestive tract. Hope you all are doing well!
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Minxie so glad to have read your wonderful news! Wanted to say so right away but I've been reading without chance to reply as much as I'd like. Wish you all could read my thoughts in response.
Texas I do hope you received good scan results. Been thinking if you.
Kaylynne, have you started the trial yet? I do hope it does wonders for you and I'm so glad you were able to pursue it. Still have it in my back pocket as well. Only one chemo on the list I haven't done yet but we had it in mind next anyway so might as well throw the dice on possibly getting a good trial drug. Hope I don't need it for a long time but I don't know. Losing my optimism in getting full yardage out of these treatments. Don't know why.
Take care all...gotta sleep.
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Hi kaayborg,
how are things with you? what did scans say? did any of mets turned HER2 positive?
thinking of you
--sfgirl
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Still negative everything. Foundation report turned up no new TX ideas either. Scans were good and showed a few cm off my two measured tumors. All still stuck together though so tumor sizes are just approximate.
New-found worries though. After adding Keytruda neutrophils tanked again and so I skipped treatment which made Thanksgiving easier but now my stomach is extremely large again and tight. Worried Keytruda caused inflammation. Surely it's not progression already. Hoping not to have to delay treatment further. Fear there's just too much disease burden at this point to take any kind of break. Also fearful of losing all of the hope I had for immunotherapy. So scared the end is coming faster than I can handle...not that I will ever welcome it but I had higher hopes. Feeling glum.
My onc is setting up scans as I type.
Sgirl...anything new with you?
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kaayborg: so sorry you are going through this. I am lifting you up in prayer that your condition changes to the positive. Hoping you scans provides some answers so you can move forward with treatment
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kaayborg, Cancer SUCKS! When is your next treatment?
I was offered two trials at Texas Oncology. The first one was a Phase II gem/carbo adding G1T28 or trilaciclib to protect my bone marrow from damage by the chemo keeping my immune system strong. The second one was the one I went down there to pursue: Phase III trial of IMMU-132 vs treatment of choice by physician. The doctor suggested I take the first one since I haven't had gem/carbo yet. I agreed but this trial has three arms: gem/carbo alone, gem/carbo with drug all on same day, or gem/carbo day 1 and new drug day 2. The trial is randomized so if I am selected for the first arm, I will opt out and do gem/carbo here in Oklahoma City. The good news is I can try for the other trial after gem/carbo either way. The issue with the second trial is that it's 50/50 that I will be selected for the IMMU-132. If I am not, I can keep trying to get in until I am selected, at least that is the way I understand it.
Doc is ordering a brain scan because I have been having headaches off and on and ear pain in my left ear. Please please don't let me have brain mets! Once that is clear, I will go to Dallas for CT and Bone scans and blood work. I find out the day before my scheduled first round of chemo whether I receive the trial drug.
So here I am waiting. I haven't had a treatment since Oct 31st. Since the Taxol was ineffective, I am concerned that my liver lesions have increased.
One thing I am doing is using my time wisely and doing exactly what I want to do.
I am praying for each and every one of you.
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It seems Halavan has already failed. Just had scans start of Nov and they showed good response...reduction of 2 or 3 cm off largest tumors. But post Thanksgiving symptoms show up. We rescan and I have increase of the same size and new lesions. I am going to try to continue Tues so long as the liver is not at risk. We have not yet had time to gauge whether the pembro eribulin combo can do something different than eribulin alone. Uck.
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Kaylynne I do hope the brain scan is clear. I have had a couple because of headaches but always clear. Hoping the same for you. I am also pursuing the immune132 in Nashville or Pittsburgh as a plan b should the pembro plan fail.
Julie...I am starting to worry about you. You out there?
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Hi, all. I haven't been on BCO in years. I was treated back in 2010, then drifted away. Was diagnosed Stage IV in early February, so the SOB stayed away for 7 years. That's good for TN, right? My tumor markers were normal the whole time. I thought I had pneumonia back around last Christmas, but it wasn't getting better. Finally realized it was pneumonia wrapped around a metastatic tumor in my right lower lobe. I started Abraxane and have been taking it 3x/month since then. It almost immediately shrunk from 5x7 cm to 3x2 cm and has stayed there. I lost all my hair except for some weird, white, old man fringe around my head. I desperately miss my eyelashes because I'm sick of my eyes watering all the time. I'm starting to have fingernail issues - sensitivity and soreness, with about half of them starting to turn white and lift up. I've chopped them ultrashort to keep from catching them on something. When I was treated originally, Taxotere made all of my finger- and toenails fall out. The nails on my big toes are still jacked up and mostly dead. Maybe it's not surprising that another taxane is causing problems again.
I just had a consultation with my old radiation onc, and he wants me to stop chemo and zap the hell out of "Ralph". He said since this is my only met, he would consider me oligometastatic and that with the rads, I can achieve long-term remission. I so want to believe this, but know there are no guarantees. I'm not sure if I have any questions, but just wanted to stop in and introduce myself. Thanks.
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Hey ladies,
Scan I had in November showed double on progression. So typically I would have moved to something else, but they decided since I was already in Dallas to go one more month and see what results we get. So I had that scan today MRI/CT. Not holding my breath, in fact I have an appt. with my ONC i had for 2 years to find out what is next.
Kaayborg, I am so sorry nothing seems to be working. Talk to your ONC about CMF it kept me stable for a year.
Kaylynne good luck with your trial. You will love the tram. Are you going to Mary Crowley in Dallas or Texas Oncology? I went to Mary Crowley for my trial.
Welcome to the group Riley. If you only have one tumor....why not have surgery to remove it? Just wondering.
Hugs to all you ladies!!!
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Tex, so glad to hear from you but sorry your scans showed progression. Hoping the extra time in the trial is helping. Please keep us posted. I am always thinking of you.
Riley, you are in an enviable position all things considered. Get that tumor out and be done with this disease. I am with Texas. Do ask about surgery. That is sometimes done in your situation. Best wishes.
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I had asked about surgery when I was diagnosed Stage IV in Feb. At the time, he said it wouldn't help and he wanted the tumor there to see how the Abraxane was working. Now, he's offering me rads to zap it. If this works, would surgery still be beneficial, too? Thanks.
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Not sure but I think it'd be worth asking about again and perhaps seeking a second opinion about. At my diagnosis, I asked about surgery and my onc said that would only be done if tumors were to be reduced to 1 or 2 small mets. That's really all I know on the topic. But, the opportunity to be cured is one to take seriously and make sure you make the best decisions to reach that outcome, so I would recommend seeking another opinion to determine the best course of action. Are you treated at a major cancer center?
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Texasrose53, the trial didn't work out. I started gem/carbo last week and have my next treatment Thursday. It's horrible but not as bad as the red devil. I'm weak, moody, fatigued and bitchy. I hate cancer and chemo!
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kaayborg, I'm treated at a local hospital, St. Vincent in Indianapolis. Simon Cancer Center at Indiana University is probably the closest thing we have to a "major" medical center, but I refuse to go there because they mistreated my father back in 2003 and I believe seriously shortened his life.
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kaayborg: how are you doing? Just checking on you. Been thinking abou5 you a lot
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Yes Kaayborg, how are you? Are you in Nashville for the trial?
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Thanks ladies, for thinking of me! I am okay...hanging in there is my stock reply. Days post treatment have been really hard on me and after that I feel better but not exactly well. My stomach is huge and treatment brings on more pain and evening tumor fevers (maybe this is tumor cell death...I certainly hope). I have scans the 27th and will decide whether to stay on Keytruda and eribulin or to hold treatment in hopes of a trial. My trial appointments in Nashville are on the 2nd and 3rd at a Sarah Cannon Center IMMU132 and Vanderbilt for general treatment/trial ideas. Very busy preparing for Christmas, working and resting as much as possible.
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Kaayborg,Sorry to hear you're in pain. I hate that. And you don't get to birth that baby!! I'm thinking of you always. Hanging in there is what we must do and all we can do. I've decided trusting my doctor in OKC will help my progress as much as anything. I've had two Gem/Carboplatin so far. I was off this week and go back on the 28th. I have occasional pain but it's not horrible. I'll pray for good news on the 27th. Merry Christmas to you and yours
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I don't have so great news. My liver enzymes are bad.
My liver isn't functioning properly.
38 is normal for AST. I am 135. 47 is normal for ALT. I am 242.
Dr Toma is cutting the gemzar in half to see if that's what's causing it. If it's not down next week, we will do a scan or MRI to see if cancer has spread. It could possibly be partly due to the cold meds I've been taking too. Anyone else have this issue? I had 4 liver lesions when we started. Only had 2 treatments before today's blood work.
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Kaylynne, I am sorry to hear this. Everyone tends to be so different it is hard to compare and I am certainly no doctor. I did not have any enzyme increase with gemzar but numbers do climb with progression. I have an enormous tumor burden. I really don't think too many more can fit in there. They can't even tell if new lesions pop up, nor accurately measure the old ones but my ast and alt are not as high as yours. I think if I were you, I might ask for a scan now, not in a week if for no other reason than to ease my mind. My onc is always willing to do so. I hope you find answers soon. I'll be thinking of you. I need to give update on my situation but for now I choose sleep. Do take care.
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Thanks for the reply Kaayborg, I have a cold and have been taking nyquil and other cold meds. I read this can cause elevation too. I am probably just fooling myself. My tumor markers will be available this morning and that may tell us something too.
Are you feeling well enough to spend time with your family? How are your girls and hubby doing? How are you emotionally? I feel like we spend so much time talking about trials and numbers and stats and white counts in order to keep from thinking about how we feel in our heart and soul. I rarely allow myself to cry and if you had known me before, I was a huge crybaby. It's so weird that I don't feel like I can cry now. it's a strange strength or denial. Thank God for friends and my girls for keeping me busy and going all the time. I know at some point I will have to deal with the real shit going on in my head.
Please update us when you can. You are in my thoughts and prayers. Sending love and light to you.
Kay
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Kaylynne, your words really resonate. I sense a kindred spirit. I especially like "a strange strength or denial.". I suspect a little of both. Planning the next course of treatment always makes me feel more in control, though I do know most everything about this disease is way beyond my control. Somehow gives me hope anyway.
I am currently perhaps more fearful than I have ever been before. Hoping this pembro or a lucky flip of the coin on the immu132 trial will give me more time but should they each be duds, I can't figure I have more than a year left if even that. At no point will I ever be ready, but I will continue to be greedy for more and more time to the very end.
I cry loads too generally speaking but this diagnosis does carry with it a sort of numbness. Only a few times in the past 3 years have I really let it all out. Mostly I just leak here and there as a random sad thought breaks in.
So my health update is that I postponed treatment today. Scans are inconclusive. No new mets found but they can't be sure there aren't any through all the mess of old tumors. One appeared to measure slightly smaller and one slightly bigger. Enzymes continue to go down but my tm doubled in just a month. 500 to 1000. Decided to get full details from trials this week, check in again on enzymes and tm in a week and either begin the trial and perhaps go back to pembro later or continue with pembro next Friday and save the trial for later. Wish there was a button you could push and see what's really working and not. Oh well...instead we wait.
Any word on your tm's yet?
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Julie, what's going on with you? I hope you had a great Christmas. Post an update when you can.
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Hartrish, how have you been doing? Is gem/Carbo still treating you well (or was it just Carbo)?
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kaayborg, labs only processed one and it was slightly elevated. I'll have the full rundown on Tuesday when my doctor is back in the office. I've definitely learned patience through all of this. I think the trial is a really good option for you. Keep on keeping on. ((Hugs)
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thanks Kaayborg for asking about me. I am on Carbo/Gemzar. So far the drugs have been working well.
Here is my scary story. In March 2017 my CA27.29 was normal, July 2017 my TM was a shocking 791 (or I thought that number was shocking, keep reading). Ct scan at that time was negative although my ALT AND AST were slightly elevated. Onc decide to wait a month and retest. August 2017 my TM was 1867. Did an MRI which showed diffuse liver cancer. By the time I started Carbo/Gemzar at Emory (which I went to to get on a trial, which I didn’t because it would take 3 more weeks and wanted to start chem fast) my TM WAS 3521, yes 3521. Started Carbo/Gemzar in September and my TM is down to 372. I had a TM drawn today and hoping it is more decreased, will find out by end of week. MRI in Nov after 3 cycles of chem showed improvement with tumors decreasing in size by 1 cm (they are tracking 3 tumors). I have an MRI Jan 18th after my 6th cycle. Hoping it continues to show improvement.
As far as my liver enzymes, here were my highest values that occurred in September: ALT 209, AST 140, all phosph 135, my total bili has been .3 to .6 the whole time (normal thank heavens). TODAY ALL MY LIVER ENZYMES ARE WITHIN NORMAL RANGE.
Also I have a bad fatty liver. Going to a Hepatologist tomorrow to see if I can address my fatty liver. If the cancer doesn’t kill me than my fatty liver might.
So overall improvement but know my case is serious. I feel good and just trying to live each day one at a time and enjoy. I have my good weeks and bad days with crying but try and focus on all the positives and blessings in my life. Turn to God and pray many times a day for divine healing.
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