protocol when on iv chemo

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kebab
kebab Member Posts: 873
edited March 2016 in Stage IV/Metastatic Breast Cancer ONLY

In my past experience, both in Canada and the US, when I've been treated with IV chemo I see my oncologist at the beginning of each cycle to discuss any changes in my blood work (which is drawn at the beginning of each cycle), have a physical exam by my onc, discussion of side effects and other meds, and just a general check-in to see how the chemo is going.

I've been on my current treatment (Gemzar and Herceptin) since the end of November. The last time I saw my onc was the end of November before the first cycle. I've now had 5 cycles. I have palpable tumors, but I've not had an exam so she can determine if/how they are responding. If I have side effects that are unmanageable, I am to email her and she sends in an Rx for me. I've had 2 CT scans and have blood work each week of chemo, but that's it. Even the nurses who give me my infusion don't check in. In 5 cycles, no one has asked me about my appetite, my bowels, my energy level... nothing. I've always had to answer those questions at every appointment in the past. I'm feeling really... I don't know... forgotten?

Is this normal for stage iv treatment? I'm considering checking out other oncs, but maybe this is just the way it is everywhere. So I'm wondering what kind of oncologist contact you all have when on IV chemo, just for comparison.

Thanks in advance.

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  • Becs511
    Becs511 Member Posts: 303
    edited March 2016

    I am also on Gemzar and Herception (and also Carbo). My cycle is:

    Week 1: See MO on Monday for check-in and physical exam; CBC and infusion of all three drugs (plus pre-meds) on Friday. Infusion nurse runs through a list of side-effects and ask if/what I am feeling.

    Week 2: CBC and just the gemzar infusion. Infusion nurse runs through a list of side-effects and ask if/what I am feeling.

    Week 3: Off. No appointments or infusions

    Then back to week 1/repeat cycle.

    In addition, I get Pet and CT scans every 3-4 months. I also was recently treated for 7 brain mets, so now I also will be getting brain MRIs every 3 months too but that is done through my RO.

    Hope this helps!

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  • kebab
    kebab Member Posts: 873
    edited March 2016

    That helps! That's more like what I was expecting. Thanks for answering.

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited March 2016

    Kebab....my routine is below.

    Chemo every 3 weeks, labs are drawn 30 minutes before I see my ONC and after everything checks out I get my infusion. If my ONC is not available (has only happened twice), I see her PA before I have my infusion. I receive a follow-up call from a nurse on Monday following my infusions, which are always on Fridays to see how I am doing and they remind me to contact my ONC if I have any SE's, fever or any other problems. PET or CT scan every 3 to 4 months as well.

    I would seek another ONC if it were me.

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  • steelrose
    steelrose Member Posts: 3,798
    edited March 2016

    Hi kebab…

    This isn't acceptable, imo. My routine has been similar to Becs'. The onc. monitors me pretty closely, and I'm good with that! Maybe it's time to look into some other oncologists?

    I hope that Gemzar/Herceptin is working for you!

    Rose.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited March 2016

    When I was on weekly taxol for stage iv, I saw my onc once a month before the start of each cycle (three weeks on, one week off). So week one was labs (blood test), then doctor for exam and discussion of side effects (once it was her NP), then infusion. Weeks two and three it was labs, then infusion. At a NCCN center.

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  • diana50
    diana50 Member Posts: 2,134
    edited March 2016

    I am getting only gemzar 3 weeks on and one week off.

    Each chemo infusion they check CBC, magnesium and chemistry. Our oncs are in offices behind infusion room. If chemo nurse has question or if something is off they can talk to onc. The oncs have set "perimeterS " on each patient do nurses know if chemo can be given. But they always talk to onc if necessary.

    My scans are 3-4 months. Sometimes 5. Because of kidney issues onc careful about contrast. My TM is very reliable.

    I see onc @ 5-8 weeks. Depends on what is going on. My onc doesn't change tx real fast. If I need something I just call the office or bring it in to my chemo nurse. I pretty much have had the same chemo nurse since I started iv. When I was in hospital my onc came 2 X to visit me.

    All this works for me.

    Diana

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  • kebab
    kebab Member Posts: 873
    edited March 2016

    Thanks so much for sharing your experiences. I think I'm going to talk to my onc about seeing her more regularly, but also give some serious thought to switching doctors too.

    I appreciate your input!


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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited March 2016

    Kebab...i think you're wise to bring this up w/your onc...and then switch :-). I think your being in active tx, means you need an active onc! It isn't an ins issue, right?

    With my 1st dx, TCH, saw onc before each cycle, (4), with 3rd dx (weekly nav/h&p for 6 mos), I saw onc every cycle (15 days). When I went to 2 weeks on, 1 off (16 months), I saw onc every 28 days. Both times, I had full labs. If it was onc day, we reviewed tests & wellness. If not an onc day, infusion nurse reported labs to onc office, reviewed w/me, asked wellness questions & proceeded w/onc approval (or not..wbc). After chemo, only h/p every 3 weeks, full labs each infusion & onc every 9 weeks. Dropping perjeta, labs every 6 weeks & onc every 12, because TMs/general well being are stable. I don't think your protocol is acceptable. My onc addresses my physical condition at appts. Sometimes I have anxiety waiting 12 weeks, so I can contact his nurse and she calls right back. If not urgent (I consider most things urgent) I can email. What about your emotional well being? I hope the reason is she knows you're doing extremely well...in which case, we like to hear that! Good luck, Kebab!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2016

    kebab,

    I answered your pm, but should add that I am not on IV chemo, so not at all sure what protocol should be. Take care

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  • car2tenn
    car2tenn Member Posts: 515
    edited March 2016

    Kebab,

    I am horrified at your lack of professional care...I suggest you"squeak loudly" with letters to management and whoever else would handle feedback. Then change to another oncology firm...WE are not treating Acne here. You are in the fight for your health and life and you should not be begging for practitioner's time. Carolyn from Music City


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