Introduction and questions (nab-paclitaxel and second opinions?)

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Sherriw
Sherriw Member Posts: 47

I lurked bco during the treatments for my primary tumors, but never posted. Hoped I'd never be back but here I am, diagnosed stage iv with mets to liver and lungs. I've got a great support system, wonderful friends and family, but still left feeling a bit lonely, like my husband and I are trapped in a nightmare and are living in our own little world. I always came to bco looking for information, but now see a positive and supportive community. I'm sorry there's so many of us, but happy to have found you all.

There's a wealth of information in these threads, but I'm finding the searching a bit overwhelming, so thought I'd ask a couple of questions here.

I'm in this trial A Study of Atezolizumab in Combination With Nab-Paclitaxel, I start Thursday. Fingers crossed I'm getting the new stuff! I did taxol before, but wondering how nab-paclitaxel will compare. Can anyone share their experience with the two? Anyone here in one of the atezolizumab trials?

I'm feeling very good about this trial as first line treatment, but would like to establish a relationship with a second opinion doc now, before we get to the really difficult decisions. Does anyone have any advice on how to go about that? maybe there is a guide or a thread with help? I know what I'm looking for, but just reading internet bios isn't helping much. They all pretty much read the same.

Comments

  • artistatheart
    artistatheart Member Posts: 2,176
    edited July 2016

    Hi sherri and welcome! Sorry you have to be here but it is a very wonderful link place to find information and just vent. It has been a real lifeline for me. Believe me when I say everyone here totally understands the feeling of being trapped in a nightmare and the feelings of loneliness. I'm sorry I have not had experience with this trial so don't have anything to contribute there. But as far as finding a second opinion, it is a difficult thing, as you never know if you will click with a person until you actually get to meet them in person. I would look to the nearest large cancer research center first if possible. At least you know they are involved in cutting edge treatments and up on the newest trials. After that, try one. If you still are not completely comfortable try another. I know this can get costly but you have to feel good about your team. Several women on here have changed several times until they met "the one".

  • Bestbird
    Bestbird Member Posts: 2,818
    edited July 2016

    I am glad you found this community although I'm very sorry for the circumstances that brought you here.

    From your profile it appears that your mets have been biopsied and that the cancer is ER, PR, and HER2 negative (TNBC). In reading about the clinical trial you mention, it appears that the results thus far have been encouraging: " Roche (SIX: RO, ROG; OTCQX: RHHBY) presented results from a phase Ib study of the investigational cancer immunotherapy atezolizumab (MPDL3280A) used in combination with nab-paclitaxel in patients with metastatic triple-negative breast cancer (TNBC). The study showed that the combination shrank tumours (overall response rate, including unconfirmed responses) in 70.8% of people, [n=24; 95% confidence interval, (CI): 48.9, 87.4]. 11 of 17 responses (65%) continued on treatment at time of data cut-off. The highest overall response rate observed [88.9% (CI: 51.7, 99.7)] was in people receiving their initial (1st line) treatment for metastatic disease, with 1 confirmed complete responder. Responses were observed in both PD-L1 positive and PD-L1 negative patients. In addition, some patients with evidence of RECIST based progressive disease developed further response with continued treatment. Adverse events (AEs) were consistent with what has previously been reported for treatment of nab-paclitaxel alone, with 56% of patients (n=32) experiencing Grade 3–4 AEs. These data were presented at the San Antonio Breast Cancer Symposium 2015 congress." From: http://www.roche.com/investors/updates/inv-update-2015-12-11.htm

    That said, it is always worth seeking a second opinion, even if the second physician confirms your initial doctor's recommendation.

    Wishing you a great outcome!

  • Sherriw
    Sherriw Member Posts: 47
    edited July 2016

    Yes, the results seem so very hopeful. I'm still waiting on the results of the pd-l1 test, but doubly hopeful since they saw results either way.

    I'm actually very comfortable with the current treatment plan. Just starting the second opinion search now so that I can take my time and have the relationship in place when I need it. Artistatheart - you confirmed my thoughts that it could take some time to find the right match.

    I'm in Portland OR, I'd love any feedback on west coast options if anyone's got some to share.

  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    Sherri - you are trapped in a nightmare, in your own little world. it's not your imagination. weirdest, scariest thing ever. but we're all trapped in the little world, too. welcome, and let us know what is going on with you. we get it. don't expect too much of everyone else. it's not possible to comprehend if you are not here.

    you arriving at a time of great change and hope, especially for TNBC. from your post, you are positioning yourself well to succeed. that's a great trial. you likely have a good onc to have navigated you so promptly to a good first line strategy. the presence of pd-1 receptors doesn't seem to matter in immunotherapy breast cancer ... but you knew that. it appears you've rolled up your sleeves, read the papers and done the research. i look forward to long wonky discussions about immunotherapy.

    I am also on a first line treatment that is working. I got it all done without leaving New Mexico. But I want to be prepared if/when I need to change treatment. And since the decisions get less and less clear the further you get from the first line treatment, i would like to go to a major medical center if/when that time comes. I would like to know which center I like and have a relationship with that institution now, before I am in crisis.

    I also feel strongly about getting a second opinion about participating in any clinical trial. There is some pressure within institutions to get people into clinical trials. I was pushed towards one early in my treatment process that didn't make sense by a well meaning oncologist. I think you are probably fortunate to get into that particular trial, (70% response rate. HOLY COW). but I would still ask someone else. You may stay on the trial, but the information and perspective you get can be surprising.

    I am in New Mexico. A lot of people from NM go to MD Anderson. Obviously MDA is fantastic, but they seem to have become the McDonalds of cancer care. MDA gets mixed reviews from New Mexicans. They probably get more people than they can handle well.

    Memorial Sloan Kettering Cancer Center puts out videos on the current state of breast cancer treatment (watch this one and this one) that make it clear they are on the cutting edge. Dana Farber, John's Hopkins, UCLA, UCSF are all exceptional and taking very very good care of several members on this site. You probably can't go wrong at one of the NCI centers.

    I am headed to Seattle in August to consult with Dr. Specht at the Seattle Cancer Center Alliance. She is highly recommended. I am not sure I will end up with her as she may be more focused on TNBC and HER2+. However, I just want to talk to her understanding my options are with SCCA. They are on the cutting edge of immunotherapy and as well as kinase inhibitors like the one I am on.

    How did I choose SCCA? I think all the major cancer centers are pretty good. In the end it was a lifestyle and logistical decision. I expect to be visiting whatever center I choose periodically for a long time. I need a place with direct flights to Albuquerque NM and my husband and I just don't like Houston or Dallas. Seattle sounds very nice.

    Good luck with the trial. Often if everyone on the new drug does well, they stop the trial and put everyone on the new therapy. So, even if you don't get the new drug initially, you will get it if and when they have demonstrated it works. Please let us know how this goes.

  • Sherriw
    Sherriw Member Posts: 47
    edited July 2016

    thanks for links to the videos! I am hungry for any and all information at this point. SCCA is definitely on my short list so I'd be very interested to hear from you after your appointment. Please post or pm if you'd like to share feedback on your doctor or impressions of the organization.

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