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Topic: Cant Believe What my Onc Did!

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Jan 19, 2010 08:39PM

alancer wrote:

A little bit of background, I am stage 4 triple neg with bc mets to lymph nodes, Ive been on the following chemos, Adramyacin, Cytaxin, taxotere, xeloda, erubilin(trial), gemzar, ixempra, now on 2nd dose of navelbine.  I go to see him after chemo today and he does his normal exam asks me hows everything going and i told him i needed a refill of my sleeping pills, he said fine and usually as he is walking out, im following behind him, to go to the checkout desk and pik up my script, he turns around and says wait, ill be right back.  he comes back and shuts the door and proceeds to hand me this slip of notepaper with a list of all the chemos ive been on and said to me *I urge you to get a 2nd opinion*, I was dumbfounded, he has been treating me for 5 years, and now he brings this up when I asked why, he said we tried all these chemos and if this one doesnt work, then there is nothing else i can do for you.  I tell you, my jaw dropped and it dropped more when I said to him, what do you mean, every month you said we will keep trying different ones and then how much time do i have, he said you have about a year.  I just couldnt believe a doctor would say something like that after the freakin visit.  Im really mad.  Of course I know it has to be about money. Isnt everything.  I have medicaid and get chemo through the hospital so it doesnt cost him anything, but, I dont know, I am so upset.  I dont have it in my organs yet, I know there has to be something out there for me to keep it stable.  I am going to try the Moffit Center in Tampa Florida.  I am only 48 and I am just not ready to let go yet.  Thank you all for letting me vent.  I know we all have our days.

angela

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Jan 19, 2010 09:06PM LuAnnH wrote:

Angela,

I am so sorry you had to deal with something like that.  Talk about being a jerk!  Right off the top of my head I can see you haven't tried carboplatin or cistoplatin.  Those two are big ones that tend to work well when combined with another chemo for triple negatives.  Here is my list of chemos that are currently available.

CHEMOTHERAPY (CYTOTOXIC) AGENTS IN COMMON USE:
  • 5FU (fluorouracil)
  • Abraxane (albumin-bound paclitaxel)
  • Adriamycin (doxorubicin)
  • Cytoxan (cyclophosphamide)
  • Doxil (liposomal doxorubicin) or Caelyx (other than US)
  • Ellence (epirubicin)
  • Gemzar (gemcitabine)
  • Ixempra (ixabepilone)
  • Methotrexate (methotrexate)
  • Paraplatin (carboplatin)
  • Navelbine (vinorelbine)
  • Platinol (cisplatin)
  • Taxol (paclitaxel)
  • Taxotere (docetaxel)
  • Temodar (temozolomide) (in brain mets)
  • Xeloda (capecitabine)
 BIOLOGICALS/TARGETED THERAPIES IN COMMON USE:
  • Avastin (bevacizumab)
  • Herceptin (trastuzumab)
  • Tykerb (lapatinib)
 HORMONAL AGENTS IN COMMON USE:
  • Arimidex (anastrozole)
  • Aromasin (exemestane)
  • Faslodex (fulvestrant)
  • Femara (letrozole)
  • Nolvadex (tamoxifen)
  • Zoladex (goserelin)
  • Lupron (leuprolide acetate)
 BISPHOSPHONATES:
  • Aredia (pamidronate)
  • Zometa (zoledronate)
  • Bonefos (clodronate) Oral, not available in US
 GROWTH FACTORS IN COMMON USE:
  • Aranesp (darbopoetin alfa)
  • Epogen (epoetin alfa)
  • Neulasta (pegfilgrastim)
  • Neupogen (filgrastim)
 ==================== LESS COMMON/OLDER HORMONAL AGENTS:
  • Megace (megestrol acetate)
  • Fareston (toremifene)
  • Halotestin (fluoxymesterone)
  • High-dose estrogen
 LESS COMMON/OLDER CHEMOTHERAPY AGENTS:
  • Alimta (pemetrexed)
  • BCNU (carmustine)
  • Camptosar (irinotecan)
  • Mutomycin (mitomycin C)
  • Alkeran (melphalan)
  • Novantrone (mitoxantrone)
  • Oncovin (vincristine)
  • Theoplex (thiotepa)
  • Velbane (vinblastine)
  • VePesid (VP-16)
 APPROVED TARGETED THERAPIES, STILL IN TRIALS, NOT IN COMMON USE IN BREAST CANCER
  • Iressa (gefitinib)
  • Tarceva (erlotinib)
  • Sutent (sunitinib)
  •  Erbitux (cetuximab)

Best I can tell you have exhausted the options you have.  I would seriously start looking although I understand that they don't like to treat you with medicaid.  You need to go to www.patientadvocate.org and see what they can do to help you out.  They are a service available to help you work through problems etc.  I also know there is a program in FL for ladies with breast cancer that need assistance for care.  I will have to do some looking to find that one.  Maybe someone else knows of that one.

Please stay current here and let us know what is going on.  There is no reason to feel you are out of choices when clearly you are not.  If you need to talk on the phone send me a PM and I will give you my number.  Hang in there and I will see what other resources are out there.

LuAnn --

Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jan 19, 2010 09:12PM alancer wrote:

Thank you for the info LuAnn, I am going to start tomorrow looking into the breast cancer center here and see what they say also, I have learned alot as I do not post a lot but I do read all the posts and that is how I found out what was wrong with me when I took Ixempra the se were so bad and he said it was a mild chemo, i was in pain for two weeks. ridiculous, i feel like he gave up on my case, so time to move on.  i dont know how to pm, kinda new on this but ill check back in a little while. gotta go do dishes.

angela

If God has brought you to it, he will get you through it

Dx 8/30/2008, 2cm, Stage IV, Grade 3, 17/17 nodes, ER-/PR-, HER2-
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Jan 19, 2010 09:14PM RobinWendy wrote:

He may be telling you the truth but it does not mean that there is not anything else YOU can do, just nothing else he can do.

Have you heard of the PARP trial?  It seems to be best for triple negatives.  You need to go to a major cancer center and see someone other than a local oncologist... someone who can get you into a trial or has ideas instead of limitations.

What a jerk

Robin 

dx Stage II primary BC in Jan. 2001;dx with DCIS on other breast in Jan. 2003; dx with mets to lungs in Jan. 2004 and in May 2007, mets spread to liver.

Dx ER+/PR+, HER2-
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Jan 19, 2010 09:17PM alancer wrote:

In fact, I read about that PARP trial here so when I asked him about it, I couldnt get on it cause I had Gemzar and just got off of that because it wasnt working. He said he didnt have any trials for me because it is strict guidelines, and i dont meet the criteria because of the chemos.

angela

If God has brought you to it, he will get you through it

Dx 8/30/2008, 2cm, Stage IV, Grade 3, 17/17 nodes, ER-/PR-, HER2-
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Jan 19, 2010 09:24PM RobinWendy wrote:

I am doing something called "metronomic chemotherapy".  It is low dose, daily pill form chemo and works totally different from standard chemo.  You should google it and read about it.  It has been around in trials for the past five years, and the trial results are coming out well.

I go to a top cancer center called Dana-Farber Cancer Institute.  If you have the means and ability to travel, I would go there to get your second opinion.  They are fantastic there... and they will not give up on you and they are tied in to many different trials.

It seems a little too soon to "give up".  PM me if you want to.

Robin 

dx Stage II primary BC in Jan. 2001;dx with DCIS on other breast in Jan. 2003; dx with mets to lungs in Jan. 2004 and in May 2007, mets spread to liver.

Dx ER+/PR+, HER2-
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Jan 19, 2010 09:27PM StillVerticle wrote:

Angela, I am SO SORRY that you have had to deal with a situation like this. I am new to the diagnosis and new to the Board, but not new to doctors. Keep searching. You deserve the best care. My prayers are with you.MJ

Good Girls go to heaven; Bad Girls go everywhere-Mae West! StillVerticle

Dx 10/22/2009, IDC, 3cm, Stage IIIa, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 19, 2010 09:42PM MJLToday wrote:

Well he's right about one thing.  You definitely need a second opinion -- or maybe a new doc entirely.  Jeez!  Talk about lack of tact.

MJ '98 Stage 2 ER+/PR-/Her-, AC+Tam: Sep 08 bone/liver mets. Arimidex,Faslodex,Zometa thru 12/09, Aromasin+Everolimus thru 03/10, Abraxane thru 3/11,Xeloda 8/11,Armed Activated T cell trial 9/11, Taxotere/Gemzar now

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Jan 19, 2010 09:44PM konakat wrote:

Let's hope navelbine works for you and gives you lots of time to get organized with another oncologist.  At least he gave you a head's up while you're giving navelbine a try, better to know he's out of ideas now rather than later.  But still, it's a big shock. 

Now that I think of it, his office should be helping you get the appointment.  Make sure they are, it will probably help you get in to see a new oncologist faster.  If they don't help, ask your PCP.

Re. how to PM.  Click on the person's name you want to send a message to (LuAnn's name here on the thread).  When you get to her profile page towards the right of the screen there's a link that says "Send the member a private message".  You'll then be taken to the message page to send her a message. If you a receive a message, Private Messages tab at the top of any screen will say something like "1 message" or something like that.

Angela -- please keep us in the loop on what's going on. Hugs,

Elizabeth

Elizabeth's Mantra: When in doubt, eat cake. When you haven't a clue, add ice cream. Elizabeth's Mets: Liver, bones, brain (yuck), and lungs (more yuck).

Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
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Jan 19, 2010 10:01PM chainsawz wrote:

Angela - I am so sorry this doctor chose to treat you like this.  You deserve better!  Shame shame shame on him.  I hope you do find a doctor who treats you with respect, because this guy obviously missed that class in medical school! 

Lisa -mets to lungs & brain - clear lymph nodes.....the weakest step toward the top of the hill, toward sunrise, toward hope, is stronger than the fiercest storm.

Dx 7/21/2008, IDC, 3cm, Stage IV, Grade 3, 0/2 nodes, mets, ER-/PR-, HER2+
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Jan 19, 2010 10:08PM 33skidoo wrote:

I'll be the voice of Pollyanna and look for the silver lining here.  He clearly has no people-skills, but at least he had the decency to tell you (badly) that he's out of ideas and that you should look for someone who knows more than he does.  Most of the docs I've met would probably watch someone die before they would admit that there is something they don't know. 

 Hang in there.

Dx 8/2007, IDC, 1cm, Stage IV, Grade 3, 1/1 nodes, mets, ER+/PR-, HER2-
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Jan 19, 2010 10:31PM lovinmomma wrote:

That is so crazy! Sorry

Kimberly 45 yo fighter

Dx 10/1/2008, ILC, 6cm+, Stage IV, Grade 3, 26/26 nodes, mets, ER+/PR+, HER2-Chemotherapy XelodaChemotherapy 10/02/2008 Adriamycin, Cytoxan, TaxotereSurgery 05/07/2009 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right); Prophylactic Ovary Removal (Both)Hormonal Therapy 05/12/2009 FemaraSurgery 07/10/2011 Reconstruction: Breast implants (permanent) (Both)Chemotherapy 09/24/2012 AbraxaneChemotherapy 01/28/2013 Halaven
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Jan 19, 2010 10:37PM Fidelia wrote:

I thought my onc was a monster - sorry alancer - you win - your former onc - definitely NOT human!!! Do not allow this idiot to ruin your chances - look how long LuAnnH's list is of all the relevant things plus - it now seems that in some cases - people can reuse treatments - or older treatments can be reused in different combinations - these articles are published by medical oncs and researchers who CARE about people and not some stupid financial bottomline - you need to find another onc straightaway - a non-lazy non-greedy one and take heart - you are still here and still doin' fine - who knows where HE will be in a year????? None of us knows - we just know we have a few more obvious challenges right now and need some HELP!!!

Fidelia

Dx 12/1/1997, DCIS, 2cm, Stage IV, 0/5 nodes, ER+/PR+, HER2-
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Jan 19, 2010 11:29PM alancer wrote:

Thank you Thank you Thank you for all the support, I feel so much better knowing I am not crazy in thinking he was off the wall.  I also feel better that you all have helped me in so many ways, I am going to get in touch with all the cancer centers I can find and as you all have suggested.  If it wasnt for these boards, Id really be in the dark.

God bless and hugs to all.

angela

If God has brought you to it, he will get you through it

Dx 8/30/2008, 2cm, Stage IV, Grade 3, 17/17 nodes, ER-/PR-, HER2-
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Jan 19, 2010 11:34PM, edited Jan 19, 2010 11:34PM by Fitztwins

my first thought was WTF????

Our doctors are not g*d. He is giving you the cue/sign that you need someone more dedicated, educated to help you...continue on this journey. Let him go and find yourself a new doctor.

Enjoy Every Sandwich.

Dx 12/12/2004, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2+Surgery 01/19/2005 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Reconstruction: TRAM flap (Left)Chemotherapy 02/01/2005 Adriamycin, Cytoxan, TaxolRadiation Therapy 05/01/2005 ExternalTargeted Therapy 06/01/2005 HerceptinHormonal Therapy 01/01/2006 FemaraHormonal Therapy 06/02/2008 AromasinTargeted Therapy 07/01/2008 HerceptinTargeted Therapy 05/05/2010 TykerbHormonal Therapy 08/02/2012 TamoxifenHormonal Therapy 06/15/2013 Arimidex
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Jan 19, 2010 11:56PM Fidelia wrote:

WTF indeed!!! Alancer - I have discarded 3 oncs and 1 radio oncologist and had 1 psychiatrist agree that one of the oncs was NO good - strange sort of head count - but as Fitz says - none of these people are god. Not only do they not know the future - the less talented ones don't even know what they are doing half the time - you will be fine and not in the dark - let us know when you track done you next helper - assertiveness and strength will get you through this :)

Fidelia

Dx 12/1/1997, DCIS, 2cm, Stage IV, 0/5 nodes, ER+/PR+, HER2-
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Jan 20, 2010 02:16AM ElaineD wrote:

Sorry you've been so upset-but at least he was honest enough to let you know that he is out of ideas for any potential future treatment.He may not have handled it well, but you know now that change is necessary.

You've had 8 chemo drugs-presumably with not a good nor sustained response to any of them? Clearly this is worrying, and I can understand why he feels that his approach is not working. As hormonals aren't an option,and some of the remaining chemos will be virtually duplicates to those you have had, then perhaps it is now the time to look into other options-really thinking of any trials which may accept you? The guidelines/protocol are very strict, and having had so many chemos, I'm not sure if you would be eligible-but it's worth trying. Good luck with everything-I can't reassure you that all will be well (neither we nor oncs can do that!)-but I do wish you every luck and good wish in tracking down some other treatment and a team which may help you.

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Jan 20, 2010 11:05AM tami444 wrote:

Angela,

I learned the hard way that some times you have to "fire" doctors ("find" new ones that work better for you).  It's time to go.

Help in FL ... have you called the American Cancer Society or stopped by your local office?  I ask because the 1.800 number (1.800.ACS.2345) which can let you know:  where your nearest office is, what help may be available (financial and otherwise ... to include some travel help for getting second opinions outside your area), you can also ask for the "Reach for Recovery" that will match you with someone in your local area that has had similar experience (... tell them your age, that you are triple negative, what drugs you've been on, that you are looking for someone that can talk to you about different treatments, etc.).  That way, the locals might be able to provide more input as to what IS available in your area. 

My bad oncology doctor experience ............ FYI, I have no tumor markers and the only way to tell if something is better/worse are the scans I get every six months.  After my first six months of chemo AND fantastic scans I went to start radiation in FL (locally in the panhandle).  I had visited once before my first scans to set things up.  [Scans @ Swedish cancer Institute in Seattle]  I stopped by Montana on the way home to FL (I'm from MT and parents still live there), got a second opinion from a radiation oncologist there (second opinions are always good) ... but I was also setting myself up so I had a place to evacuate to and continue treatment since it was hurricane season (already evacuated twice... this was a "just in case" scenario). 

My husband I went in to give the radiation oncologist my great results.  We only got to see the dr after we argued with his nurse because she said treating my bone mets were not something the dr planned to do (only chest wall).  We asked to see the dr so we could understand why.  He basically told us that he wanted to wait until the cancer came back.  That any treatment I had in the future is only "palliative care", that we were "dealing with emotion", that he was "dealing with facts" ... and that was after we told him that we knew the statistics, but we wanted to radiate the last known place the cancer was (assuming most of the cancer was removed with the breast). This was even recommended by the MT radiation oncologist. 

He said all this while he was sitting back playing with his belt and the pleats of his pants (no lab coat).  We went from a great "high" (fantastic scans) to the "lowest low".  I broke down crying outside while my husband tried to keep it together.  This drove me to leave FL to have two months of radiation treatment in MT by a doctor and staff that had a positive attitude vice one that had already written me off.  It was one of the best decisions we made, but we wouldn't have been driven there if not for his attitude.  Time to find you another doctor.  The one you have has clearly reached all he believes he can do for you.

Best of Luck!

Tami

Diagnosis @ 39 yrs old: Dec 2005, IDC, 8cm, Grade 3, R Mastectomy Jan 06, Stage IV, bone mets, ER+ PR- HER2+, chemo, rads, lymphedema, stacked DIEP Feb 08

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Jan 20, 2010 06:09PM kenzie57 wrote:

OMG:  I find it totally unbelievable that he would pass you a note after your visit?????  It sounds like you have gotten some good advice here and I think this has happened for a pretty damn good reason.  Like you need a new frickin Doctor!!!!

Keep us posted Angela!!

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Jan 25, 2010 04:44AM susanmary wrote:

A new doctor!