Triple Negative Stage IV

14445474950103

Comments

  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited January 2016

    Hi Bosco. Thanks for your advice to me. I am struggling with increased pain but taking it literally hour by hour til 8th. I don't know anything about the lining of the brain but wanted to just wish you the very best with whatever you and your onc do about it. Barbar

  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited January 2016

    Sorry got confused. Meant to say thanks Lauralind.

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited January 2016

    Oh Bosco I'm so sorry. I know you must be terrified. I don't know anything about the intrathecal thing other than that's how it's treated.   I hope they jump on it fast. 

  • rossileo18
    rossileo18 Member Posts: 55
    edited January 2016
    Barbar,
    Weren't you offered something for pain? My breast and chest hurt and I've got to wait until the 10th to star treatment, but my MO at least asked me if I wanted something for pain control.

    Anna
  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited January 2016

    Hi Anna

    He didn't mention it although I think I will ring up on Monday and see if they will give me something. Best wishes with the wait. At the moment I kind of feel like Zi am having to deal with it hour by hour and it's not helping that I can't get comfortable to sleep. Barbar

  • moderators
    moderators Posts: 8,643
    edited February 2016

    Bosco19, please keep us posted! We are thinking of you!

    As you are all discussing pain, you may find this page helpful: Pain Medications and Other Pain-Reducing Therapies.

    Gentle hugs to All! Medicating

  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited February 2016

    Hi Anna

    Hope you are managing the wait for treatment. I managed to get some medication for pain today.

    Bosco

    Thinking of you. Hope you are ok

    Hugs

    Barbara

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited February 2016

    Hey Bosco....praying for you! Keep us posted.

  • rossileo18
    rossileo18 Member Posts: 55
    edited February 2016

    Barbara,

    Trying to make do with Tylenol 3. Trying to keep busy and not look at my chest! Thanks.

    Anna

  • Rosieo
    Rosieo Member Posts: 200
    edited February 2016

    Barb and others: In this day and age should we have to endure pain along with all this other crap.

    I would call my Dr and tell him to prescribe something. They just can't let you suffer all those days.

    Please call you DR. It just wears you down dealing with pain everyday.

    My thoughts and prayers are with you

    Rosieo

  • Rosieo
    Rosieo Member Posts: 200
    edited February 2016

    bump

  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited February 2016

    hi. I had a port put in yesterday and am having treatment tomorrow. I feel really exhausted and like I just can't do anything. It's so depressing but at least tomorrow I shall have the mental plus of being treated . Barbar

  • rossileo18
    rossileo18 Member Posts: 55
    edited February 2016

    Barbar,

    I'm with you! I've been counting the days until treatment too and can't wait. It's rather sad that we're 'looking forward' to getting poisoned. But at least with treatment there is hope.

    Hope all goes well tomorrow.

    Anna/rossileo

  • Bosco19
    Bosco19 Member Posts: 177
    edited February 2016

    Barbar

    The port is a great invention and makes treatment so much easier. You don't need to but I put EMLA cream anaesthetic over where the needle will prick about half an hour to an hour before I get it accessed so I don't even feel the prick. My new treatment should start tomorrow too so I will be thinking of you


  • kaayborg
    kaayborg Member Posts: 576
    edited February 2016

    I've noted this as a big week for many of us! Barbar and Anna, best wishes to you both as you start treatment. I always look forward to treatments and have thought myself kind of weird for loving them so...but poison or not, they are a life source, so I am naturally addicted.

    Julie, thinking of you and your scans tomorrow. Mine are Thursday. I always think of scans as my "grade card" maybe because I'm a teacher or maybe because I'm just bit nerdy. Anyway, here's hoping for good marks for the both of us!

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited February 2016

    Good Morning all!! I am glad this board has stayed alive. I look forward to reading everyone's posts and catching up on how everyone is doing. Barbar and Anna hoping the best for your treatment.

    Kaayborg and Anna....I am like you. When I am not getting treatment (my off weeks) I feel like we are not doing enough. I too look forward to my treatments. I feel like I am doing something productive to battle the mets. My scan is scheduled for Wednesday morning early....and I am lucky to get my results that afternoon. My ONC will be out of the office on Thursday and Friday so they have made a special request to get my scans back so the ONC can go over them with me that afternoon. Fingers crossed for you and I Kaayborg and prayers too!!!

    Hoping everyone has a GREAT week!

  • rossileo18
    rossileo18 Member Posts: 55
    edited February 2016

    Kaayborg,

    Yes, I'm glad to see people posting on this. Sometimes it seems so hopeless since the options for us TNBC seem so limited, so it's good to see everybody still carrying on. I'm both scared at the prospect of the trial but also excited to be part of a what we hope will be a breakthrough way to treat BC.

    Have a great week all!

    Mamiya, hope that you are still having minimal SE with your new treatment.

    Anna

  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited February 2016

    Hi. Got through the treatment ok. I was worried either something in the blood test would mean it got put off or I would have a reaction but I am ok except fatigue.

    Barbara

  • Mamiya
    Mamiya Member Posts: 151
    edited February 2016

    Rossilio18, I am still feeling pretty good! What drugs are they using for your trial? Is it this one: NCT02637375?


  • rossileo18
    rossileo18 Member Posts: 55
    edited February 2016

    Mamiya,

    NCT02403271 is the trial that I'm on. It's MEDI4736 (Durvalumab), which I think is the same PDL1 drug that you are on, but the second drug is different from yours. Mine is ibrutinib. I think yours is something like trenebulib?????

    Can't they come up with a name that we can remember????


  • Texasrose53
    Texasrose53 Member Posts: 290
    edited February 2016

    Ladies,

    Keep us posted on that PDL1 trial....that is my next choice if the current chemo stops working. Let us know if you have side effects, how long the infusion takes, how you feel, little bits of advice you have for when going through that trial....etc. Smile

    Julie

  • Mamiya
    Mamiya Member Posts: 151
    edited February 2016

    Yep, mine is Durvalumab and tremelimumab, and yes, please can we have some names we can pronounce?

    I had my first infusion on Friday, it was easy, the only complaint is that I had to have the dreaded IV benadryl which I hate but other than that, it was simple and took an hour for each drug (for the first one they watched me for an hour after each one so it did take 4+ hours but future infusions won't take so long) and the side effects are nearly nothing - and I've read that the first is the worst. A tiny bit of upset stomach and a touch of D, but really, compared to chemo, nothing!

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited February 2016

    Mamiya...that is awesome! How long before you have a PET/CT?

  • rossileo18
    rossileo18 Member Posts: 55
    edited February 2016

    Mamiya,

    So both your drugs are infusions? The ibrutinib is a daily pill. Can't wait!

    Anna

  • Rosieo
    Rosieo Member Posts: 200
    edited February 2016

    Ladies

    Yes I am glad to see this thread staying active also. I guess there are not too many of us! I will look forward to hearing about your trials. I could not get my chemo last Thursday because I told my MO I was totally zonked. No energy at all. Hate to miss a treatment. I am still not too perky, and I really don't feel all that well. Not much appetite, etc. And on top of everything my hair fell out. So I guess you can say I am now a true blue chemo girl. :-(

    I hope everyone has a beautiful evening and lets keep this going. There is a lot of positive energy here and I know for one, I need it.

    Rosieo

  • Homehelp
    Homehelp Member Posts: 64
    edited February 2016

    http://www.onclive.com/web-exclusives/asco-selects...

    Good luck to all starting these trial

    Hopefully this works great and everybody can get the drug

    Is there a placebo in any of these trials?

    Is chemo given with immunotherapy ?


  • Homehelp
    Homehelp Member Posts: 64
    edited February 2016

    what is terrific is that the trial MED 14736 was approved for lung cancer and HER + in the past

    These drugs are being used more and more for solid cancers like kidney , bladder , and for whatever reason now breast

    Not sure why exactly it's taken this long , but I think it's being used and studied with more vigor and optimism

    I think as of now we must wait for approval as it has not been approved for Tnbc , which stinks because it takes a little while to enrol and get approved , but it seems as if it's worth getting into a trial , especially if there is no placebo

  • rossileo18
    rossileo18 Member Posts: 55
    edited February 2016

    Homehelp,

    I don't think theres a placebo in my trial -- at least the consent form didn't say anything about a control group. The second drug is classified as a targeted therapy , not chemo. Need to get more questions answered.

    Rosieo,

    Sorry that you're not feeling well. Try to keep your spirits up and find some joy in every day. That's theonly way I'm getting through all this waiting. Hugs.

    Anna

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited February 2016

    Hey everyone. Sorry for my absence. I have been keeping up but I've been feeling so crappy and haven't been awake much. Ugh. Anyway I didn't have my 3rd weekly infusion of carbo because I was doing so poorly so I had almost a week off. I finally did get to feeling better just in time for infusion ha! We switched to every 3 weeks of carbo. The last week hasn't been fun but I've had worse SE from chemo. Mostly just sleeping and zero appetite, which given the month of January bc of steroids I ate ALL THE THINGS not having an appetite is nice lol

    I hope everyone's tx are going well. Julie let us know about your scans !! Will be thinking about you in the morning! 

  • rossileo18
    rossileo18 Member Posts: 55
    edited February 2016

    hi everybody.

    Just had my first medi4736 infusion and ibbrutinib pills and am bored out of my mind. Been here since 7:30 am and am being monitored like crazy. By the time I'm done hopefully at 5 I will have had three EKGs, 4 blood draws, countless blood pressure and oxygen checks. So no obvious SE yet.

    I guess this is the world of being a Guinea pig.

    Anna