Topic: Cant Believe What my Onc Did!

Jan 19, 2010 04:06 PM 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.

• 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)

• Avastin (bevacizumab)
• Herceptin (trastuzumab)
• Tykerb (lapatinib)

• Arimidex (anastrozole)
• Aromasin (exemestane)
• Faslodex (fulvestrant)
• Femara (letrozole)
• Nolvadex (tamoxifen)
• Zoladex (goserelin)
• Lupron (leuprolide acetate)

• Aredia (pamidronate)
• Zometa (zoledronate)
• Bonefos (clodronate) Oral, not available in US

• Aranesp (darbopoetin alfa)
• Epogen (epoetin alfa)
• Neulasta (pegfilgrastim)
• Neupogen (filgrastim)

• Megace (megestrol acetate)
• Fareston (toremifene)
• Halotestin (fluoxymesterone)
• High-dose estrogen

• Alimta (pemetrexed)
• BCNU (carmustine)
• Camptosar (irinotecan)
• Mutomycin (mitomycin C)
• Alkeran (melphalan)
• Novantrone (mitoxantrone)
• Oncovin (vincristine)
• Theoplex (thiotepa)
• Velbane (vinblastine)
• VePesid (VP-16)

• 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.

Jan 19, 2010 04:14 PM 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 

Jan 19, 2010 04:24 PM 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 

Jan 19, 2010 04:42 PM 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.

Jan 19, 2010 05:01 PM 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! 

Jan 19, 2010 05:31 PM lovinmomma wrote:

That is so crazy! Sorry

Jan 19, 2010 06:29 PM 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

Jan 19, 2010 06:56 PM 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

Jan 20, 2010 06:05 AM 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

Jan 24, 2010 11:44 PM susanmary wrote:

A new doctor!