Anyone taking Navelbine, please step up.

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naturegirl2
naturegirl2 Member Posts: 332

Well, it looks like my oncol. will put me on Navelbine(intravenous chemo) in one week. I go in Monday for my port. This is all scary for me. I would like to hear from those who are taking Navelbine please. Any tips etc. would be appreciated.

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  • gramen
    gramen Member Posts: 179
    edited November 2016

    hi nature girl, I've been on navelbine along with perjeta and herceptin for almost 7 months. We tried weekly navelbine but my blood counts tanked so changed to two weeks on and one week off, which is working so far. Overall, I've haven't had any major side effects, compared to when I had taxotere and taxol, which allows me to have pretty good quality of life.

    As far as results, not the slam dunk my Dr was hoping for, but some shrinking at the beginning and we are calling the last couple of scans "stable".

    I hope is a really good drug for you too. Is your Dr putting you on navelbine alone or with other therapies? I ask because my Dr keeps telling me that she doesn't think navelbine is doing all the work, but that perjeta and herceptin are also a big part of the combo...

    Best wishes for you

  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited November 2016

    hey there naturegirl2, I was on navelbine quite awhile back for 3 weeks on and one week off.  I had a hard time keeping my white counts up and we ended up doing the same as garmen, 2 weeks on 1 week off.  After about 6 months both my lung and bone mets had cleared up and I went back to aromasin with afinitor along with Herceptin.  I have been on just aromasin and Herceptin for the last 3 years and am still in remission.  I hope you have great luck with navelbine, other than my issue with white cell counts I didn't really have any side effects.

  • naturegirl2
    naturegirl2 Member Posts: 332
    edited November 2016

    Hi gramen, thank you so much for responding to my thread. My oncol. will have me take Navelbine alone, once a week for two weeks, then off one week. This is the first time I am having IV chem. except for many years ago when I was first diagnosed with BC. I go in for my port in the a.m. Then come next Monday I will have Navelbine. It's good to know your quality of life is good. Wow, combining other drugs to the mix, wow.

    Did you loose your hair on Navelbine alone? Did you loose your hair with those combos you are taking? My oncol. tells me I will not loose my hair on Navelbine. That is the deal breaker as he knows I will not accept any treatment for which I loose my hair.

    Hi LuAnn, good to see you. That is good to know you didn't have any issues per say with Navelbine except for the low white blood cell counts. Glad your combination meds are helping you. My oncol. will have me on Navelbine once a week for two weeks, then of one week. Did you loose your hair on Navelbine? That is great that you are in remission!

  • gramen
    gramen Member Posts: 179
    edited November 2016

    Naturegirl, no hair loss! After doing taxotere/taxol, I was really not looking forward to it. I do take it really easy no coloring, only wash it every two or three days with gentle products and I'm rocking the curly look (no blower/flat iron).

    Sending good vibes your way, and hope you have no side effects. I was told to watch out for constipation and neuropathy, but so far ok...

  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited November 2016

    I did not loose all my hair but it certainly did get thinner.  I hope this tx works out as well for you as it has for others here.

  • naturegirl2
    naturegirl2 Member Posts: 332
    edited November 2016

    Hi gramen and LuAnn, good to know no hair loss but some thinning. I've noticed more hair in my hair brush while on Xeloda. I was only on Xeloda 4 cycles, then off because of progression. I had the port put in yesterday. All seems okay except for a cough that continues on with whizzing since cycle 2 of Xeloda. I put in a call today to my oncol. to recommend a good pulmonary doctor. I can only sleep on my left side and coughing at night does not help my new port I'm sure. Next Monday I go in for my first IV chemo of Navelbine. I hope I get good results like y'all did. So I'm taking it both of you have had ports put in. Any comments about that, tips suggestions, other join in a well please.

  • Groovywilma
    Groovywilma Member Posts: 450
    edited February 2017

    Hello! I'm hoping to revive this thread if anyone has any information to share about their experience with Navelbine. My time with Gemzar has come to an end and my doctor said Navelbine is up next. Can you share what side effects you had? How tired you felt? Did you have nausea? Did you combine it with anything other meds? I've been on Gemzar for 10 months and although it makes me tired, I've been able to continue working. I'm wondering how others have done on this. I'd appreciate anyone who can share their experiences! Thank you!

  • Southernsurvivor
    Southernsurvivor Member Posts: 632
    edited February 2017

    Naturegirl2 - how is the Navelbine going?

    Groovywilma - did you start this drug?

    This is an option for me and would like to hear of your experiences.

    Thanks

  • theziz
    theziz Member Posts: 159
    edited February 2017

    Hi ladies;

    I hope all is "going well" with everyone in this tread.

    My Dr put me on navelbine after failing Xeloda, faslodex and ibrance. I have 2 treatments and I've been experiencing some bad abdominal pain that makes me wonder sometimes if I have peritoneal mets. Is anyone experiencing abdominal pain while on navelbine?

    Thanks

  • Freya244117
    Freya244117 Member Posts: 603
    edited February 2017

    Hi ziz, I've had two treatments of Navelbine, after also failing at Xeloda and Faslodex, and also having abdominal pain and so bloated I look 6 months pregnant. TMI, but I think some of mine is from constipation.

  • theziz
    theziz Member Posts: 159
    edited February 2017

    Thanks Freya for your response.

    My abdominal pain got so bad today that I had to take something for the pain. I have an appointment today with my MO and I hope we can sort this pain out

  • Freya244117
    Freya244117 Member Posts: 603
    edited February 2017

    Ziz, I take oxycontin every morning and endone throughout the day as needed. I'm not sure if the pain is from the Navelbine or the liver mets? It's 2.30am here, and the pain is keeping me awake.

    Hope you come up with a plan.

  • theziz
    theziz Member Posts: 159
    edited February 2017

    I hope that we are all going well.

    Turns out that the abdominal pain is caused by the swell liver. We are hope that navelbine takes care of it.

    He gave me better pain medication and I feel better.

    Cheers

  • Freya244117
    Freya244117 Member Posts: 603
    edited February 2017

    Happy to hear you feel much better Ziz. I hope the Navelbine starts to work for both of us soon

  • naturegirl2
    naturegirl2 Member Posts: 332
    edited February 2017

    Hi Southernsurvivor and all,

    Went in yesterday for Navelbine treatment and could not have due to low white blood count. That happene once before. Prior to that, I started my first Navelbine treatment the end of November. Three days later, I had CHRONIC back pain for which I called 911, and, two nights in a row had to do that. I was put in the hospital and that is under control at this time. Needless to say my chemo treatment was delayed, then started back up in January. I get waves of nausea, and flu-like symptoms, i.e. chills but not often. I had lung ailments and have had to have my lung drained three/four weeks ago that I'm still dealing with. Now my oncol. is talking about taking a booster shot, Neupogen, to get my white blood count up so I can take my chem. From what I read, Neupogen can cause lots of joint pain and bone pain so when I do see him again, I'm opting out of that. He said booster shot, not daily so you know it would have a one/two punch. Not for me. I would prefer my body recover on it's on with the white blood cell count. I'm just now starting to feel better and more like myself. Argggghhh. I also told my encol. I would be willing to take Navelbine every other week rather than two weeks on, one week off which translates to me taking Navelbine twice a month rather than three times a month. He said that would be okay with him. Quality of life is very important to me.

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