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CarynRose 
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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 Posted: Feb 08 2009 at 5:36pm |
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Sara,
By hook or by crook, you will get in to see CTCA. Keep me apprised of the situation there and I'll work on my end. I'll be back there on Friday for my PET/CT scan and will have all day to bug them.... (it will take my mind off waiting for the results of the scan).
Connie -- you make me blush. But frankly, I still wouldn't want anyone to go through what I have.
Love,
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Feb 08 2009 at 5:50pm |
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Sara,
You go armed with every post you can find on this site as to why you have questions. If you need any help retrieving information just let me know. It is the doctors who need to be educated....not the public....they need to see why they have to tell the women dx with TNBc that this is not your grandmother's bc....this is what is happening to women when they do not listen to them...and do not treat this aggressively.
Since Connie already posted that eloquent and from the heart post, I cannot add anything to it....except....she is 100% right. If we do nothing else ever on this site....please...let it be that we say....do everything in your power to live to be 100 and listen to Caryn also...she speaks from the heart.
Sara, if you have a problem with doctors not wanting to listen to you, please know that you can call the TNBC Foundation, and they will find you a doctor who will listen. The women of the foundation will go to the ends of the earth if they have to, to get you help. That is a promise!!
Sara...we are all here for you, and I know you through my daughter Lori's eyes......
Love and many hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Feb 09 2009 at 6:20pm |
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Sara,
We all give each other strength. You too also add to that strength in this forum thru your posts, being you and your show of persistance really matters. You go!
Let us know what you hear next week.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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outnumbered
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Joined: Feb 02 2009 Location: New Jersey Status: Offline Points: 525 |
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Posted: Feb 10 2009 at 3:59am |
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The Good news - I AM GOING TO BOSTON The Bad news - I can't get in until mid-March.
Thats actually not that big of a deal at this point since I am already 6 months post-op.
I also spent some time last night with my husband reading studies and he now sees where I am coming from. Its been hard for him. He has been so supportive and there for me every step of the way, but he views certain (not all, only those well published and actively involved in research) oncologists as "rock stars". He had a hard time with me questioning the opinion of one of these rock stars. However, if I have an opinion from someone even more superior in the hierarchy of "rock starism" that is ok. He is the son of a doctor (not oncology or anything related) so this is where some of this comes from.
I am still waiting to hear from CTCA and I will follow up with them later today.
I feel very hopeful since the wheels are in motion. Its easier to accept the waiting game when I am actually doing something pro-active rather than sitting and waiting for everything to happen TO me.
I can't go back in time, but at least I have some idea where to move ahead.
By the way, you guys are the rock stars in my book!!!!
 Hugs to all!!!
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
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ChrissieD
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Joined: Dec 30 2008 Location: United States Status: Offline Points: 131 |
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Posted: Feb 10 2009 at 11:14am |
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Hi Sara -
I am so happy to read you are going for another opinion!! I live near Boston and received my 2nd opinion at Dana Farber in Boston. Where are you going? You are closer to getting your questions answered so you can move forward. Mid-march will be here before you know it.
God Bless You.
Chrissie
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39 from MA, Mom(8.5 and 6),
Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Feb 10 2009 at 11:26am |
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Sara,
This is great news...and as Chrissie said, mid March is very close. Moving forward is the answer, as we can never look back. I have heard that Dana Farber is great, and read all the updates from them.
If you cannot get in to CTCA, CarynRose has a direct inside line to them
 Perhaps you have already spoken to her.
Many hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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outnumbered
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Joined: Feb 02 2009 Location: New Jersey Status: Offline Points: 525 |
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Posted: Feb 10 2009 at 11:40am |
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Dana Faber it is...
CTCA does not feel that my cancer is "active" so I guess I am Christina Applegate...and need to have a bonafide recurrance since I am 6 months post op. Whatever. I will go to Boston and see what happens there...
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Feb 10 2009 at 3:28pm |
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Grrrrr..... Sara, just let me know if you want to me to do something with CTCA.
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Feb 11 2009 at 3:47am |
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Sara I am so happy for you.
It will come quickly and you have such a good point. It is very true, we feel better when we are pro active as opposed to waiting on things to come to us.
And in the situation we are in the harder we work the better. It definitely is to our advatange since we are our best advocate for our life! Edited by trip2 - Feb 11 2009 at 3:48am |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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hummingbird
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Joined: Dec 02 2008 Location: Seattle USA Status: Offline Points: 15 |
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Posted: Feb 11 2009 at 10:59am |
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This is only my second post--I've been a bit of a lurker.
I was diagnosed with TNBC on 10/06. I didn't do the research I should have, and had a lumpectomy, sentinal node biopsy, and radiation. My cancer returned this November exactly where it was before-- right along the scar line. Oh how I wish I had done chemo before. Basically, the oncologist said I could do chemo if I wanted to (my cancer was less than a centimeter, stage I grade 3 no nodes involved). She showed me some 5 year studies that had very good odds of being cancer free after doing radiation alone, and she said, and I quote "Those are petty good odds. If you were in Vegas would you bet on those odds? Maybe you should just roll the dice." And roll the dice I did. I guess I shouldn't go to Vegas. No one explained what being triple negative really meant. Had I known then what I know now, things might be very different. Finding this website has taught me so much, much more than any Dr. could tell me. I had a mastectomy on January 5th with a one step implant procedure at the same time. It's taken me a little longer to recover due to some unexpected problems in recovery. I also had a lymphnode dissection this time as well. Cancer was 1.6 centimeters no node involvement. I had my port placed yesterday and am starting dose dense x4 ACT next Tuesday. I also had my "chemo teach" with the nurse yesterday. I went in so confident with all of the knowledge I've gleaned from this wonderful website, ( and the help Nancy, she's such a nice person). Anyways, the nurse said I couldn't have a prescription for things like magic mouth wash until I "earn them" Basically, I have to suffer the pain of the moth sores before they'll give me the prescription. I left the appointment feeling unempowered and out of control. Is there any other way to get the magic mouthwash? I already get terrible mouth sores when my immune system is down, so I 'm almost positive I will get them with chemo. If anyone knows of another way to get it, I would really appreciate it. Thanks for letting me ramble. Karen |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Feb 11 2009 at 11:32am |
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Karen,
Now....the nurse who told you that you have to "earn" your mouthwash must be a very sadistic individual. You will tell her that you demand the script for the magic mouthwash, and you want it before you start chemo next week. What a horrible thing to say to a person starting chemo.
 GRRRRR!!! Who the he** does she think she is??Also, you demand that you get the script for Emend....that is the "golden" med for nausea. You tell your onc that you want these scripts. Not the nurse. This woman needs to get a job trimming bushes.!!! No, actually she does not need to work anywhere!!
Also, if I were you, I would report her to the oncology department, or the hospital where she works. We're not talking about earning badges for girl scouts, we're talking about the fact that you cannot eat or drink once the mouth sores appear.
Karen, if many of the women would have had the info that is now readily available here on this site....things would have been different for them also. Now you have it and you go armed, and do not back down!!
You are in control, and never think any differently....never. You tell this nurse for me that this is your body....your life....and you are not going to suffer even one second more than you have to. Or...perhaps she would like to take a treatment or two for you...and she can "earn" the mouthwash also.
Do you have the same onc that told you that you didn't need chemo in 2006? I hope not. Comparing the odds or betting on the odds when it involves cancer is inconceivable.
I don't know where you had this "chemo teach" but they did not teach you anything, except to be submissive....and sweetie, with the women on this site behind you you will not be submissive. Your body....your life Karen...take full control.
 Many hugs, and let us know how you make out.
Nancy
PS....
Oh and tell "Nurse Nasty" as Connie has well named her that you also will be telling the onc that you want the script for Neulasta.....that is one "golden" shot that you get 24 hours after chemo. If you get the Neupogen....which the stupid insurance companies will approve because it is cheaper....then you have to take many shots for many days...I can't remember how many. Neulasta is for your white blood counts. Edited by Nancy - Feb 11 2009 at 1:54pm |
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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outnumbered
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Joined: Feb 02 2009 Location: New Jersey Status: Offline Points: 525 |
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Posted: Feb 11 2009 at 11:35am |
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Hi Karen,
I am assuming the mouthwash you refer to is Caphosol. The website is careom dot com. (I am not sure if it is apropriate to post an actual link)
This mouthwash is approved for exhisting mouth sores, however off label it has been shown to prevent the sores as well. Doctors do prescribe it this way all the time. Go directly to your doctor, skip the nurse. PUSH!
Although I have not had chemo, I do know there is absolutely no reason why you have to suffer side effects if they can possibly be prevented. A close firend of mine (diagnosed within a week of me) took all kinds of preventative meds so she would not be sick to her stomach. When on Taxol, I think you get beanadryl to prevent allergic reaction, etc, etc.
Best wishes to you.
xo
Edited by outnumbered - Feb 11 2009 at 11:47am |
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
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cg---
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Joined: Jul 20 2007 Location: Canada Status: Offline Points: 1379 |
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Posted: Feb 11 2009 at 12:45pm |
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When they speak of Mary's Magic Mouthwash in the States - it could be made up of a combination of things.
Mylanta or Maalx - reduces acid.
Liquid Benadryl - (takes out any inflammation, allergic response)
Lidocaine - (freezing agent)- some places have it over-the-counter - others have prescription.
Liquid Tetracycline or Erythromycin - to prevent bacterial infection of sores in the mouth
Nystatin - to prevent thrush (white tongue and spots in mouth, tongue, thraoat)
sometimes glucocosteroid - reduces inflammation and swelling.
USE BIOTENE products of toothpaste, mouthwash, gum, toothbrushes, etc - the BEST for chemotherapy mouth -
I, also, was exposed to Nurse Nasty.... and Nancy gave you good advice...when a door slams in your face - find a window!
One of us becomes intimidated when we are going to ask for something at the oncology clinic and are refused, dismissed, ignored....but when you are in any situation again you are not alone....we are there right beside you in spirt giving you support, encouragement and strength to get what you NEED for a positive outcome.
Love,
Connie
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Tracy
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Joined: Jul 20 2008 Location: United States Status: Offline Points: 52 |
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Posted: Feb 11 2009 at 2:07pm |
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This nurse is not tuned-in. I did not get these prescriptions in advance but all I had to do was ask for them and they were filled asap. If you know you are prone to those sores, you have a legit. reason to get some of them in advance. I ended-up with severe mucositus - not mouth sores (well maybe one at the end of chemo); my throat problems presented like a sore throat, no sores so it was hard to know if it was sore throat or the more serious thing. I started on 2/14 last year and that cold/flu was going around. I caught it one day before I started chemo. All of these will help with the mouth and/or throat issues:
Lidocain (likely the first grade) Gelclair (the second line and more effective) Triamcinolone Acetonide - Dental Paste (the best for any mouth sore and probably very easy to get) Not all insurance will cover the second one - I gave almost all extras back to my oncologist so others could benefit as I know some insurance companies won't cover them. Keep your throat and mouth moist - using non-sugar candy so you don't get cavities - and drink water. I like the non-suger Werther's - different flavors now. Very soothing. I brushed at least 3 times a day and I gargled with walm salt water and baking soda, off and on during the day and sometimes at night. All of that helped keep bacteria from forming. I used a little flash light to always look in my mouth and in my throat to check for those sores - looking in the mirror while I did so - great way to stay on top of it. I was also "allowed" to take Metagnics brand Ultra Flora IB; it is a high grade probiotic and that helps with the stomach and with any mouth sores. Kick some chemo bootie! |
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Tracy
San Diego DX 12/20/07, Stage 2, TNBC, Grade 3/2.5 cm Chemo start 2/14/08; rads ended 9/08; A/C - Taxol; Neg. Sentinol Node; lumpectomy; past 5 years! |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Feb 11 2009 at 2:16pm |
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Tracy,
Lori also gave any meds she had left over to her onc, for anyone who could not afford them. Lori had everyone of her scripts filled before every chemo. She didn't even have to ask for them, he wrote the scripts and told her what they were for, her appt. before staring chemo. She already knew, as she is a nurse.
Karen needs to "kick the nurses booty"...give me the number of that "chemo teach" nurse...I'll kick some booty. I just don't have any tolerence any more for nasty people.
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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sportress
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Joined: Aug 13 2007 Location: United States Status: Offline Points: 18 |
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Posted: Feb 11 2009 at 3:38pm |
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Hello
i had a lumpectomy and radiation, i refused chemo in any form. It will be 6 yrs this coming august so for over 5.5 yrs i have been just fine. I still thank the stars everyday that i did refuse. But that is me. My surgeon told me no chemo, my GP said no chemo, Mayo Clinic, Univ of Washington and Univ of Virginia said no chemo..oncologist said chemo and LOTS OF IT. the oncologists opinion was lost out to the majority of others.
not only did i have triple neg i have ACCB adenoid cystic carcinoma of the breast--salivary cancer in my breast. I am one of 200 documented cases. I was lucky that my surgeon had seen it before, and that i have the Univ of Washington here in seattle who has seen it before.
I think you have to make your own decision in this, if you want to have chemo i am sure you will find a doctor who will be more than willing to do it. You cannot listen to anyone, family, parents, friends, people placing a guilt trip on you, doctors, etc...you cannot listen to anyone but yourself.
Cece
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Feb 11 2009 at 3:50pm |
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Cece,
Where have you been? It's been a long time...am I right? Do you sneak in when we are all sleeping and lurk?
 Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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hummingbird
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Joined: Dec 02 2008 Location: Seattle USA Status: Offline Points: 15 |
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Posted: Feb 11 2009 at 5:15pm |
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Thanks to all that have responded and been soo supportive and full of great information! Nancy, YOU ROCK!!!
I was feeling pretty low today, but after reading the posts I feel like I can do this nasty chemo and I DESERVE anything that can help to alleviate any unnecessary pain or discomfort. Thank you fellow warriors and I will let you know how everything goes. Karen |
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cg---
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Joined: Jul 20 2007 Location: Canada Status: Offline Points: 1379 |
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Posted: Feb 11 2009 at 6:07pm |
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Dear Sportress... Please do not compare apples and oranges...your cancer may be rare but it also RARELY metastasizes anywhere else and not often found in a lymph node. Removal and radiation makes for an excellent recovery and survival with your type of cancer and you are proof of that...but other women have far different breast cancers with more aggressive characteristics that require chemotherapy....they don't willingly want to poison themselves...the will to live is so great that they do! If it was hormone positive - they would have just put you on a antiestrogen.
Unfortunately, Cece, the average person does not have an extensive data base of breast cancer-related material so an intelligent person would go on a fact-finding mission and gather all the facts from all sources and make the decision that best suits their needs. Connie
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ChrissieD
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Joined: Dec 30 2008 Location: United States Status: Offline Points: 131 |
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Posted: Feb 12 2009 at 4:19am |
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Hi Karen -
I am sorry for what you are going through and your chemo teach nurse was not nicer (That is JUST WRONG!!). I just wanted to let you know that often the anxiety leading up to chemo is far worse than what you will muster to make it through once it starts. At least it was for me. I was nasty the week before my treatments started - yelling at everybody, crying for no reason, etc. I am happy to say I had my 7th of 8 treatments this past Monday and wrap up on 2/23. It was tough but I am making it through. I did not get mouth sores (got hemroids instead - and there is no mouthwash for that!).
I would like to think the nurse thought she was being funny. I am hoping it was wishful thinking and you won't need the mouthwash because you won't get the mouth sores! Don't think twice about mentioning it to your oncologist too. The nurses where I am are GREAT but sometimes they do need to check with the oncologists. I have NEVER asked for something and been told no or to wait.
Best of luck to you! Hugs -
Chrissie
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39 from MA, Mom(8.5 and 6),
Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
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