bone mets....chemo drugs...any advice?

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bottkota
bottkota Member Posts: 285
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I was just diagnosed Monday with recurrence to my bones.  Mainly my sternum and surrounding lymph nodes, the biggest node being 2.8, under my sternum.  I am going to begin a clinical trial through the Mayo Clinic hopefully next week (pending insurance approval, I really hate insurance).  These are the drugs, Abraxane, Gemzar and Avastin.  21 day cycle.  Day 1 all three drugs thru iv over 2 1/2 hours, Day 8 first two drugs, no avastin.  week 3 rest.  start the cycle over.  any advice for me?  not sure how to brave treatments again but need to in order to insure I be around for a little while longer (okay I want to live to be a VERY OLD LADY).  my oncologist told me I have a 50/50 chance of remission again.  please help!  never dreamed that I would be in this boat again, i had a good 4 1/2 years now I need to fight again.  what about diet overhaul?  any advice.  are there things I can't take/eat while on chemo?  any supplements that I can do or not do????  any advice would be great.

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited November 2009

    Bottkota,

    I am so sorry that you are going through this stuff again!  I would recommend you go over to the Stage IV threads.  There are wonderful ladies over there with a lot of experience with these drugs who can also help you out on a lot of other issues (financial, family topics, etc.).  I've never had any of these drugs, and I'm sure your biggest concern is  how will you tolerate them and what you can expect.  You will find help at BCO.  I couldn't do it without everyone here.

    Good luck to you. 

    Bobbie

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  • pitanga
    pitanga Member Posts: 596
    edited November 2009

    Bottkota,

    I am very sorry to hear you have become a member of this sh**ty club. I also became a member this year and I am still assimilating it all. Wish I could burn my membership card or stop paying my dues and get kicked out...

    Like you I have bone mets. Unfortunately I can´t offer any advice about the chemo combo you are contemplating because my onc has me on Arimidex instead. I had chemo 10 years ago but it was a different combo, and all of the drugs have slightly different side effects. A general rule of thumb is to drink LOTS of liquids...but there must be other ladies on this forum who have experienced that combo and who can offer you some concrete suggestions. Many people experience significant tumor shrinkage and even disappearance, so take heart and hang in there, sweetie!

    Lisa 

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  • jeanne46
    jeanne46 Member Posts: 1,941
    edited November 2009
    When my cancer first recurred, I also did Abraxane and Avastin (not the Gemzar).  I had very good results.  A few things to be aware of.  You will lose your hair due to the Abraxane (not sure about Gemzar) It will actually start to grow back too.  Abraxane can cause some peripheral neuropathy, but I did not experience any. The Avastin caused my nose to run, occasionally bleed (no big deal) and eventually it caused my blood pressure to rise.  That was dealt with blood pressure meds, and after I quit the Avastin, my blood pressure returned to normal.  All in all, it was very doable.  In between I tried to do as much "normal" activity as possible.  The two weeks between the last cycle infusion and the beginning of the next was usually when I tried to plan overnight ventures or special events (and a glass of wine!).
     
    As far as supplements, I worked with a herbal/supplement specialist.  I did take multis, vit. D, COQ10, green tea extract, fish oil extract - and other stuff.  I recommend working with someone familiar with your chemo and cancer.
     
    Nutritionally, the best suggestion I have is to eat healthy (5-9 servings of veggies and fruit), meat, poultry in moderate amounts, good amount of fiber, avoid highly processed foods, etc.  But I also come from the school that says "if I want a piece of chocolate I should have it."  In other words, all things in moderation. Oh, and exercise as much as possible and giver yoga/meditation a try.  I also went for acupuncture to help keep my immune system as strong as possible, and to deal with fatigue.
     
    edited to add:  have no idea why, instead of spaces, my post is filled with <address>  - sorry about that. 
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  • Chelee
    Chelee Member Posts: 513
    edited November 2009

    Bottkota,  I am SO sorry to hear you have to go thru this again.  I can probably relate to many of the feelings your dealing with now.  I was just dx with recurrence too.  Femur, ilium, right axilla, chest wall, liver.  I had a good run of 3 yrs 9 months now this.  I've been due to start chemo twice now but something always stops it.  I just went to have a Ortho check out my bone mets on femur and he said my hip is ready to fracture and wants to do surgery asap. He wouldn't let me leave without a walker & wheelchair...thats how bad it is.  :( 

    Are you Her2/neu at all?  I can't remember?  I just wanted to mention if you can't get into this trial because your insurance turns you down...make sure to look into the TDM1 trials.  They are having excellent results!   I went to two 2nd opinions so I just wanted to mention that out of those two 2nd opinions along with my own onc which makes 3 opinions on my trt.  Dr. Slamon was all for the TDM1...and the City of Hope onc and mine both said Navelbine/Herceptin/Zometa.  (Not sure if any of this helps....but since you and I have almost the same kind of recurrence...just wanted to mention what I was told in case you can't get into this trial.  Just trying to throw out other options for you as a back-up plan which you probably won't need. (Its always good to have one just in case.)  

    As to the trial your waiting on...those are all good drugs and should do a nice job and getting you back to NED.  :)   You did it before and can do it again.  Recently I heard if you respond well the first time around it is a good indication of doing it the next time "It" rears its ugly head.  So since you got a good runt the first time...the odds are in your favor.  As someone else mentioned I did hear the Avastin can cause alot of problems with blood pressure...that seems to be a big issue...but it is one they can deal with so I would not let that stop me.  Hang in there...keep us updated and let us know if you get approved or not.  Keep researching...and always be pro-active! 

    Chelee

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  • bottkota
    bottkota Member Posts: 285
    edited November 2009

    Thank you so much ladies!  This has been a wild ride!  I found out Friday that my insurance approved the trial!  YIPPEE!!!!  That was a huge answer to pray.  Along with that wonderful news came the news that my dad has small cell lung cancer and will begin treatments this Wednesday and my uncle (my dad's brother) has advanced leukemia and has hours to weeks to live.  What a blow this has been to me.  But now I am focused on myself and am ready to fight.  My question is this: it looks like it will be another week before i can begin chemo, is this bad?  the cancer isn't going to like spread elsewhere in the mean time is it?  I am getting a lot of feedback about the chemo drugs I am going to take being very promising about doing the trick.  I am triple negative Chelee, which is not a good thing.  UGH  i really hate hearing that.  it almost feels like it is a death sentence.  i am ready to kick this cancer in the *ss and get on with life again.  another question i have is this: should i also be on a bone strengthener?  my research nurse asked me today is my doctor had mentioned zometa to me or not?  is this something that should be looked into?  what is with the bone strengthing meds anyway????  any advice you wonderful ladies could give me would be great. thank you all for the sound advice and the shoulder to cry/vent on :)

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  • konakat
    konakat Member Posts: 6,085
    edited November 2009

    I'm on monthly Zometa (another one is called Aredia) to strengthen the bones.  I don't know all the details but if your bones get weakened with mets the zometa will help rebuild them.  There are a lot of chemos out there, hang on, it will get better.

    Elizabeth

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