Inflammatory breast cancer clinical trial

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Gypsy66
Gypsy66 Member Posts: 5
edited June 2014 in IBC (Inflammatory Breast Cancer)

Just diagnosed June 28th with IBC. Agreed to participate in clinical trial; was assigned to trial that includes Abraxane (nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide) and pegfilgrastim, PEG-G. I am 4 days post PortACath placement and scheduled to begin chemo on Monday, July 16th.



However, my trial also includes Avastin (bevacizumab). After doing the online research of all the controversy over Avastin, I am more fearful than ever and wondering if I have made the correct decision.



Has anyone out there been involved in a clinical trial with Avastin? I'm staring down 24 weeks of ongoing chemo before any consideration of surgery can be made. 12 of those weeks include the Avastin.



Any information good, bad or indifferent will be most appreciated.

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  • Sherlocked
    Sherlocked Member Posts: 46
    edited July 2012

    Hi Gypsy,

    I think you've made the absolute right decision - although it's wise to be your own advocate and do your research.  All chemo is horrible for you, that's just the way of it. But then again the possible consequences of taking even Tylenol can be pretty horrifying.  I think with that lineup that you're going to get, it will kick your cancer to the curb for good and all - it's an understatement to say that IBC is still not easy to treat, and often recurs very fast...the more weapons you have the better.  For most of us, our bodies recover from most or all side-effects...we are amazingly resilient.  A year ago I had days I could barely get off the couch - just last week I spent 14 hour days prying up floorboards and painting the house. You might want to bring up your concerns with your doctor and if he or she doesn't answer your questions to your satisfaction, get another opinion...it's important to be onboard with your treatment for your own peace of mind.  My personal method to get through was just thinking "you know, I'm not even going to think about the consequences right now".  Like Scarlett O'Hara, 'I'll think about it tomorrow when I'm stronger'.

    You will find ladies on these boards who have been very distressed by all the negative press Avastin has received and restricted availability, because they are positive it has saved their lives.  It definitely works for some people, and they are learning which subtypes it really does work on.

    None of we primary IBCers ever have surgery until chemo is completed, btw - not if our doctors know what they're doing.  It is one of the changes that is saving our lives.

    Best of luck to you and big hugs.  I know many IBC survivors of 5+ years (and some of 20+ years) - that's about how long they've known what they were doing with treating us.  Our stats are getting better and better, and there is all the reason in the world to be hopeful.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited July 2012

    Gypsy,

    The trial could be very good.  I heard Avastin with other chemo works well.  I'm 3 years out and did taxotere, cytoxin and adriamyacin for 8 months, once every 3 weeks.  A year after being stable, I had bmx/recon and last 3 scans have been good.  I was stage IV from the start with bone mets and do monthly Zometa for the bones and daily Femara for ER+ status.

    Hope your treatment does well for you.

    Terri

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  • Gypsy66
    Gypsy66 Member Posts: 5
    edited July 2012

    Thank you for your encouraging words.  I've made peace with the fact that this is probably the best course of action I have for survival, which is ALWAYS our ultimate goal!  : )

    Bring on the Chemo!!! 

      

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  • Sherlocked
    Sherlocked Member Posts: 46
    edited July 2012

    You go, Gypsy!!  Onward and upward!!  (Although you won't be feeling the whole "upward" thing for a few months.)  Remember if you have any side effect complain about it, the side effect meds these days are amazing.  

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  • Dutchie
    Dutchie Member Posts: 112
    edited July 2012

    Hi Gypsy! I was diagnosed with IBC in 2008 and participated in a clinical trial with Avastin. So if you need to talk to someone on the "other end" of the trial, let me know!



    Mine included epirubicin/cytoxan/taxotere/Herceptin and Avastin. My 10 cm of tumor shrunk to mere millimeters when I had my UMX. I credit a lot of that to Avastin. You're getting regular MUGA scans to monitor your heart I'm sure-- my EF went from 70 to 60. Not bad!



    But here's the other side of the coin...Avastin IS a nasty drug and I had to stop the trial when my blood pressure skyrocketed to 200/110. So I am permanently on blood pressure medicine.



    Do I think Avastin saved me? Yes. Would I take it again? Yes. But make sure they're watching you carefully for side effects. As my doc said, right now your cancer us more dangerous than Avastin. But still, you should know there may be long term consequences.



    Good luck and give that cancer hell!!

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  • dmlenn1
    dmlenn1 Member Posts: 47
    edited July 2012

    Oh wow!  Please take care of yourself while you go through this and keep us updated! I mean... I am so excited for you... and so scared for you at the same time. I will keep you in my prayers

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  • Gypsy66
    Gypsy66 Member Posts: 5
    edited August 2012

    Well, an update. The Clinical Trial has gone OK so far. My Port became infected days after it was implanted, so it was removed. Now I'm just a walking pincushion.



    My side effects have been tolerable; total hair loss, occasional nose bleeds, minimal nausea and that's about it. Have not had the scary high blood pressure!



    Tomorrow is treatment number 7. My question is, how do they assess whether the chemo is working or not? How do they know if my body is responding? I thought there would be some tests, but they said no. They just looked at my breast and said, "Yeah, that looks better".



    That just didn't seem very clinical to me.......now I'm concerned.

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  • Sherlocked
    Sherlocked Member Posts: 46
    edited August 2012

    Well, from my experience last year, when we really knew the chemo was working was when I had a PET scan, mammography, and then bmx at the end of primary treatment - so, 7 months after the start of chemo.  No tests in between but one of the very few advantages of IBC - maybe the only advantage of IBC - is that you can actually see your therapy working.  At about 4 months after start of therapy I think all my visible symptoms were entirely gone, and it was confirmed by the above-mentioned tests a few months later that the cancer was entirely eliminated.

    Frankly, if it wasn't working, you'd know it because your symptoms would be increasing.  "It looks better" is awesome!  Sorry to hear about the port infection, that's lousy, but glad you're doing so well otherwise!

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  • Dutchie
    Dutchie Member Posts: 112
    edited August 2012

    Sorry about the port issues but I just know its helping you. Hang tough and best wishes to you for great results!!



    P.s. I didn't get the high blood pressure until about 9 months on Avastin so no worries. And it may never happen to you, although I think that's one of the common SEs.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited August 2012

    I'm surprised they are not doing Pet or CT scans every 3-6 months on treatment.  I'm sure they will be checking your blood each month.  When I had TAC chemo for inflammatory bc, I still had the redness, but the swelling went down and my breast tissue was no longer hard.  The chemo also eliminated a 3.5 cm idc tumor completely.

    Good Luck with your trial.

    Terri

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