Abraxane and TNBC that has metasisized

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auroraguy
auroraguy Member Posts: 9
edited September 2018 in Stage IV/Metastatic Breast Cancer ONLY

I am asking on behalf of my wife. She is stage IV TNBC with bone mets.
She has chest/neck skin lesions. The TNBC has come out on her skin.
Vital organs are clear at the moment with the exception of Plural Effusion in 1 lung.
She has completed 2 of the initial 3 rounds of Abraxane (3on/1off).

So far we haven't seen any changes/improvements although she has kept her hair at the moment.

What I am looking for is anyone that has some experience in how long or how many treatments until you saw or were told results?

I've not found much online except side effects of Abraxane.
So I thought I would post here and see if someone can comment.

Thanks,

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited August 2018

    Dear Auroraguy,

    Response to treatment is highly individual. Usually we are told that response to chemo can be figured out by about three months of treatment, and response to anti-hormonals can be determined at six months of treatment. That's in the absence of big symptoms, I reckon.

    If your wife feels about the same on Abraxane, that's not bad. Maybe it is keeping her stable? Does your MO use tumor markers to assess her condition?

    Once thing I would add is that as a TN, she is very attractive to those running immunotherapy trials. They want people who have lots of mutations to aim T-cells at, and TNs, and HER2+ have them. Have you looked at trials?

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  • auroraguy
    auroraguy Member Posts: 9
    edited August 2018
    Yes he runs 2-3 tests for tumor markers. She had been going up up up - but last thursday she went down for the 1st time in months.
    5400 down to 3500 in one marker.

    Again, she only has had 2 infusions of Abraxane. She just asks me when we might see a change. Most of her cancer is visible except for the bone mets - we can only see them on PET scans. So it is easier to see if there is a change based on the lesion growth or expansion.

    She is ER-PR-/HER2- and BRCA negative.

    I am not aware of any trials for immunotherapy for her specific case.
    I've had her evaluated at 2 Medical Colleges that do trials and her case was discussed with the Harvard med team as well.

    We have CAR T trials going on here in our area but not for BC or TNBC..
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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited August 2018

    AuroraGuy,

    I'm off to chemo, but did a quick looksee:

    https://clinicaltrials.gov/ct2/show/NCT03362060?re...

    https://clinicaltrials.gov/ct2/show/NCT03316586?re...

    https://clinicaltrials.gov/ct2/show/NCT02938442?re...

    I know the NIH is running trials that accept TNBC because I'm in the waitlist for one of them (they are also accepting ER/PR+). When I come back, I'll hunt up the information for you.

    I'm leaning towards immunotherapy trials. Your wife might have had tumor flare when starting treatment with Abraxane, which would cause the TMs to jump up in the first month or two. The recent drop is a good thing.

    Gotta go get the EMLA cream on, and put on my port access outfit for chemo.

    Jennifer

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  • auroraguy
    auroraguy Member Posts: 9
    edited August 2018

    Well the 1st trial is Phase 1. Cant do that.

    But the other 2 are Phase 2 trials....for sure.

    The location/distance doesn't work but it's nice to see some trials.

    The Medical College here didnt mention these. CTCA did mention a few when I reached out to them but after meeting with CTCA I didnt feel it. CTCA is a separate topic for another day though.

    Thanks,

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited August 2018

    AuroraGuy,

    That first one is phase 1B. No one is getting cytokine storms from these protocols. The drug they are investigating is Keytruda, and turning it on TNBC proteins. Plus, it is really in your neck of the woods. If your wife is the right serotype, these avenues are leading to durable remissions.

    If I could do this trial, I would in a flash. Why don't you just see if your wife fits the inclusion criteria, and keep it in your back pocket?

    CTCA gives me the willies. I don't know how I feel about pure profit medical operations.

    Jennifer

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  • auroraguy
    auroraguy Member Posts: 9
    edited August 2018
    Looks like the first trials are in MA.
    I am in the midwest...quite a ways from Boston area.
    I could ask our local Medical College about access to this trial - but transport is not an option for us.

    Thanks for looking. I and my wife do appreciate it.

    In the meantime we will continue to hope that Abraxane will come through for us.
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  • tpnegmom
    tpnegmom Member Posts: 3
    edited August 2018

    Hi Auroraguy,

    I am stage 4 TNBC. Started with large mass in left breast with affected lymph nodes, pleural effusion in left lung and mets to bones. Started clinical trial Abraxane with Keytruda/Placebo in March. I do not know if I am getting the Keytruda. Past 4 months have been great breast mass and lymph nodes consistently shrinking and pleural effusion gone. After first set of scans bones mets increased I was told this was the treatment bringing it out. Now bones mets are stable. I was very shocked that this week's ct scan showed lymph nodes becoming enlarged and a few lung nodules in opposite lung that were microscopic also getting a little bigger. Not sure what this means yet. Could it be same scenario as the bone mets situation or did the treatment stop working. Will discuss with doc this week.


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  • auroraguy
    auroraguy Member Posts: 9
    edited August 2018
    Thanks for your reply.
    We had the lung drained and fluid processed through the lab. But 3 days later it was 1/3 filled back up. Not the whole cavity though, but 1/3 of the same area and same amount. Now I presume its equal or worse. She has been getting winded going upstairs and asking me about that. Well is it the Abraxane kicking her or effusion? - We see the MO Friday afternoon.

    I looked at the Keytruda/Abraxane trials but because we didnt know which we would be (Keytruda vs placebo) I didnt do the trial.

    I have seen no change in her skin lesions so far after 2 treatments. Not sure if I should though. We have #3 this friday after the MO visit. Carboplatin worked for her for a month and then it came back with even a stronger presence. I dont understand.

    To make matters even worse, our 9yr old Collie was diagnosed with cancer 2 weeks ago.
    I had to come home and tell my wife. Very very hard.
    I found a surgeon specialist that was recommended to me.
    They took our dog into the OR and wanted to try and save her. I really had no upper limit on the money since this dog was only 9.

    Once in the OR, they discovered her entire chest area and abdomen was filled with cancer. She was not operable. I had to make the call to put her down during the OR and then once again find the strength to call my wife and tell her our dog has passed.
    Its been a living nightmare on every front. Next up, my wife is waiting for her hair to fall out. I am doing my best to keep her mood up and try and trivialize the hair loss but I cant imagine how she must be feeling. All she has for support is me and once I put my dog down, I am not much help now.

    Please let me know (here or PM) on your progress
    tpnegmom.
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  • tpnegmom
    tpnegmom Member Posts: 3
    edited August 2018

    Hopefully the Abraxane will work for her. It is supposed to be a very good drug and I’ve heard women have been on it for a few years. I have had minimal side effects and it did take care of the effusion.  I also am a very firm believer in diet. I keep a strict plant based diet with no refined carbs, sugar, meat or dairy with the exception of sheeps milk yogurt and fish. Also I force myself to do daily yoga or walk every day. Regardless of my scan results this week I will stick to this hoping it will help in the long run. I am so sorry about the loss of your dog but please stay strong and positive. New trials and treatments keep coming out if we can just hang in there.

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  • auroraguy
    auroraguy Member Posts: 9
    edited September 2018

    Well the Abraxane did nothing but cause massive hair loss 3rd week in.
    Tumor markers went down the 1st week but each week kept going right back up.
    After the 3rd infusion, and on her 'off' week - I ended up taking her to ER.
    She was admitted. Plural Effusion same left lung but this time 90% fill.
    No wonder she had issues breathing and coughing.

    They did the 'tap' and pulled out a full 2 liters of fluid.
    Coughing the next 36hrs really bad but now she has calmed down.

    Met with the ONC MD Yesterday. He said no more Abraxane. If she had no Plural effusion he would've kept her on it. So we were switched to Doxil once a month.
    She got that yesterday. Hard to look at this 'poison' going into her veins but it is what it is.

    She has a Neulasta device for release like 25hrs after or something. They put it on her stomach as she has no fat on 1 arm and lymphodema on the other arm.

    On Abraxane the only real 2 side effects she had was hair loss (at week 3) and extreme fatigue and sleeping all the time.
    So far she still has her eyelashes and brows and there is some hair still on her head but most of it fell out. I've been trying to cut it here and there for her.

    So I am optimistic Doxil will help. Its in interesting designed chemo drug but Im sad that it has come down to this....
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