How do you deal with "what do we do now?"

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cwrightrn
cwrightrn Member Posts: 242

HI Ladies....I'm new to the site and my story is under "share our stories" but my question is this. Although I had a great response to chemo it was not complete and I have residual cancer in the skin (which radiation should get) and in the lymph channels.  My oncologist said there are now no protocols to follow....so what do we do now?  ASCO May '09 does not recommend chemo for residual cancer but due to my age (39) she wants to do more chemo but what?  She is looking at xeloda with radiation then increasing the dose for 4 months afterward.  Flalady I saw you did gemzar/carbo/avastin--was that postop (I am TN too)?  My oncologist said that if I did carboplat it would preclude me from PERP inhibitors if I need them later (but my thought is....I don't want to wait for it to come back, I want to get it now!).  I live in Eastern Washington and got a referral for another opinion in Western Washington but do you folks recommend that...and what would make you trust another Dr over what your Dr is recommending?  Sorry for so many questions but I know you are all a wealth of information and I appreciate your thoughts.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    They are right about no set protocols...I have found through my journey that only your first line of treatment is on standard protocol and anything after that is your doctor's working off his/her's research.  I had good response with carbp/gemzar/avastin...put it this way.. I have very aggressive bc even for TN.  This combo kept my skin mets from coming back for two years and this is very very rare to have skin stay clear this long when you are TN.  I had 56 nodes positive for bc. They thought my skin would just go everywhere.  My first tx was ACT, surgery than rads.  On the last week of rads my skin mets came through where I just had 35 rads??? So rads did not work for me. As for Parp?? I've seen so many things that they put high hopes into the last four years that turned out to be nothing that don't know if I would wait around on it. Are you Brac+?  Right now they are the only few ladies they are treating. If you are not brac+ this would help you answer the question of holding out for Parp. I would not do Ixempra again...this did clear up my skin but when it came back...it was like the tumors where super powered. The tumors were hugh and numerous very fast. Other TN ladies told me this same thing so stay away if you can.

    I would get a second opinion and ask the doctor why he would approach different and where is the research too back this up.  I've been in your shoes of trying to figure out who is the one with the most knowledge??? I've been to seven different oncologist because my doctor's were upfront with the fact they did not know what to do next.  If you stay it this very long you will find a lot of medicine is nothing more than try this...if it does not work then try that...I'm in this position again and they are wanting to pass me around to see who will step up with a plan.  You need a doctor with TN knowledge not some much IBC.  IBC is still treated of receptor status and TN research is slow to get published, so the doctor's need to take time to find the latest research.

    Keep us all posted with your status and I hope you find the doctor and treatment that is best for you.

    Flalady

  • cwrightrn
    cwrightrn Member Posts: 242
    edited July 2009

    Thank you thank you thank you ladies for your replies!  It confirmed much of what I thought.  I didn't know about how hard it is on the skin though and will ask about that....my oncologist and the rad onc said that the radiation should zap it all but we'll see. To answer your question Flalady, I am brca (-)...and I saw that too...that PARP inhibitors are more for brca (+).  My oncologist did tell me I needed to shift my thinking more from having IBC to being TN.. I did hear that too and of course HATE IT!!  Thanks for your thoughts on the second opinion....my oncologist has been very open to doing whatever I want and I asked her to call her contacts so she has called Seattle, MD Anderson (very unhelpful) and UCLA where she was a fellow.  So without me going there in person, she has found out info from those places and I feel comfortable with that so we'll see.  You are the second person I have seen on the forum that has done the gemzar/carbo combo so I will ask about that.  Xeloda is the same class of drugs as gemzar but I have only seen through literature Xeloda used in combo with something so I need to ask about that.  THANK YOU THANK YOU THANK YOU for all your info.  Prayers for you both!!

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    I so glad that your doctor would do this.  So many will not even pick up the phone.  I'm not surprised about MDA not being helpful. I did a trial there and would not send my dog back there.

    If you are willing to travel look into the Thermdox trial.  This is where they use hyperthermia with rads.  See Youtube for videos and also see Duke University about there research.  This trial will pay for travel expenses.

    Glad you are feeling more comfortable.  Your doctor sounds like a good one.

    Flalady

  • billiegirl
    billiegirl Member Posts: 85
    edited July 2009

    I was born & raised in Seattle but moved to Boise a few years ago. I did a lot of research while going through assorted BC care oversights and flub-ups. Dr.Gulie Gralow at the U of W is one of the best in the nation and is an IBC expert. See her if you can. She was not part of my HMO, but I wish I had had the sense to pay out of pocket to see her 1st (but I did not know any better when this all began) Since moving to Boise, I have found another GREAT oncologist, Stephanie Hodson. I highly reccomend her. 

  • cwrightrn
    cwrightrn Member Posts: 242
    edited July 2009

    Thank you Billiegirl for your post.  Dr Gralow IS the Dr I was referred to in Seattle and my insurance will pay for one visit (a Dr friend of mine from work recommended her).  She is booked 2 months out and I will be in radiation at that point and won't be able to leave town.  I am waiting to visit my Spokane oncologist, Dr Joni Nichols (who came highly recommended also)  and see who she is communicating with on the West side.  Dr Gralow's office has a medcom service where ANY Dr can call them and get a consult.  Thanks so much for the reassurance that who I have been recommended to is great!  I saw that you are 4 or 5 years out....congrats!  I'm hoping that for me too!

  • cwrightrn
    cwrightrn Member Posts: 242
    edited August 2009

    Just an update to this post....I had a few pages of questions for the Dr after reading your posts and doing research.  Spent an hour with the oncologist this week and here's what she said: Basically, as FLAlady said....its pretty individualized as to how to proceed.  There are no protocols or research for me having residual cancer.  Dr Gralow from Seattle recommended NO MORE chemo but IF we wanted to, to do avastin and a taxene. 4 other Dr's my Dr consulted have all different opinions but ALL of them would treat me with SOMETHING.  So my Dr agrees Xeloda is out of the question (unless we just use it with radiation).  Parp inhibitors are being studied for Stage 4 only so that's not an option, and, according to my Dr the studies are widening to ALL TN including BRCA (-) but they won't be out of study for another 2-3 years.  So she is thinking of gemzar/carboplat but she is worried the gemzar may really hit my skin during radiation so she is looking at carboplat/taxene.  She is not a huge avastin fan because the use of chemo alone vs avastin plus chemo is not that significant, and again, used for stage 4.  Sooooo we are in for a fight with the insurance company....to see what they will approve.  I asked my husband, "at what point do we just stop and rely on faith and the studies that say no chemo is recommended." But he reminded me that God gave us Dr's and medicine and I will add, even insurance companies that may deny our plan---and that will be our answer.

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