Go To Main TNBC Website


  New Posts New Posts RSS Feed - Unexpected Changes
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Unexpected Changes

 Post Reply Post Reply
Author
RoxieMom View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 08 2014
Location: Arizona
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote RoxieMom Quote  Post ReplyReply Direct Link To This Post Topic: Unexpected Changes
    Posted: Jul 10 2014 at 11:32am
Hi there
I'm 45 and from Arizona and was just diagnosed a few weeks ago with TNBC. To say it was a shock is an understatement. I actually found the lump and kept telling myself that it was just a fibroid. Yeah, that story didn't hold water for long.

I was told about a new research study for TNBC and using Carboplatin with Veliparib and I signed up for it. I've just completed all of the tests and still waiting for the last blood test results to get the official green light to start. Then they will schedule the port placement and start the chemo.

Honestly, the more I read, the more confused and scared I get. I don't know what to expect. I am expecting to lose my hair, but I never thought that I could lose my nails. I was approved by my manager to work from home, but is that even realistic? I've heard that it is, but what about these new drugs? I was told that they won't produce any new symptomatology, just worsen the existing symptoms from normal chemo.

My emotions are all over the place. One minute Im strong, the next Im depressed. The next I just want to scream at my loved ones when all they're doing is try to help. I don't know how to get myself in check.

Im going to keep surfing this forum, but any advice (like my dentist told me to chew a lot of gum and drink a lot of water to combat dry mouth) would be most appreciated.

Thank you all in advance.
Dx IDC TNBC 6/23/14; age 45
Stage 2, grade 3
2.9 cm mass, no LN involvement
Waiting to start clinical trial
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4879
Post Options Post Options   Thanks (1) Thanks(1)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 10 2014 at 11:59am
Hi Roxie
Yup, the emotion thing is a real roller coaster. At the beginning, there's really no way to control your feelings and I'm not so sure that it would be beneficial if you could. It's hard for families and friends around you to figure out how to support you while dealing with their owns fears and needs as well.
Chemo expectations are often worse than the actual journey. I know I tended to stay awake at night running scenarios through my head that were traumatizing to say the least. Then I got to the chemo infusion room and people were chatting normally, napping, watching movies and it all seemed surreal.
I did a clinical trial as well, congratulations on your going the extra mile and deciding to join one. It sounds like a good one! I was really appreciative of the trial protocols. I had more scans than a SOP, there were more blood tests taken and my oncologist had the advantage of being able to call the research team when I had symptoms he wanted to report.
On a trial it's a very good idea to do your own homework. Get a thermometer and take your temp morning and evening and write down in a journal. Also take your own BP at least 2x a day. My trial med caused my BP to skyrocket and because I was self monitoring I recognized it right away and we were able to get started on a BP med. Likewise, do keep things like rashes, dry mouth etc notes in your journal.
I didn't have a real problem with dry mouth but I did get a few sores in my mouth. I discovered Biotene for dry mouth wash and have been a fan ever since. I don't think I'd be chewing gum as I found that sugar and even sugar substitutes tasted like industrial waste to me. I did drink a lot of water and the Biotene also offers a purse sized spray bottle that you can use to help. The dry mouth is something to pay attention to as it can create an environment for infection.
A strange thing happens when you're on chemo. You go day to day, face the journey's symptoms and then one day you realize that, hey, losing a toenail isn't the end of the world, it will grow back, I'll just keep the area clean and this too shall pass.
That's the thing about chemo, after you've done gone through it, there's no such thing as having a problem with a bad hair day or a broken nail...life is what matters.
You'll do fine, just remember that there is no question too small, no problem we won't listen to. Take good care of yourself.
Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3586
Post Options Post Options   Thanks (1) Thanks(1)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 10 2014 at 2:38pm
Hi Roxie,
Welcome.
Mainy has given you such good advice. She has much knowledge of cancer; having it herself and her sister also. Love you Mainy.

I also love clinical trials as I participated in one also. Mainy is correct about getting some extra perks while participating in a trial.   My only concern is that the veliparib/carboplatin trial contains none of the three popular chemo drugs that Mainy and I had in our trials. Taxol, Adriamician and Cytoxan. Roxie, I am not trying to scare you, I have become a bit more inquisitive since my sister-in-law got bad advice, from her oncologist, about a clinical trial a couple of years ago. Hopefully, someone more knowledgeable than I will straighten me out.

I do have a thought about the chewing gum. When I had chemo the corners of my mouth were very sore and actually split at times. Chewing gum would have been impossible. Drink lots of water and I also vote for Biotene.

Roxie, do you know what surgery you will be having? How about radiation? Great to hear that no lymph nodes are involved.

God Bless,
Lillie

Edited by Lillie - Jul 10 2014 at 2:40pm
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
Back to Top
RoxieMom View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 08 2014
Location: Arizona
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote RoxieMom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 10 2014 at 7:37pm
Oh my gosh.. I am in tears right now. Thank you both so much for responding back to me. I was afraid that no one would answer me. I know, Im being silly.

Mainy you are the best! Thank you so much for that awesome advice and I am going to hang on to the fact that my priorities are going to change going through chemo. I actually look forward to becoming a new person through this.

Lillie - thank you so much for your advice also. Im sorry I forgot to mention that the clinical trial includes the main 3 Taxol and AC with the addition of Carbo and Veliparib. You were afraid of scaring me, but I think I scared you more by leaving that little bit of information out of my post. LOL Im sorry.

Biotine it is!! Two recommendations is enough for me. :)

I haven't decided on the surgery yet. Right now, Im a good candidate for lumpectomy after chemo, but if my BRCA comes back positive that will change to mastectomy. They told me that I will only need radiation if I get a lumpectomy or have positive margins from the mastectomy.

I am keeping a journal of my feelings already so I will just add some vital signs as well. Can't hurt right?

Thank you both again so much! You just made my night.
Dx IDC TNBC 6/23/14; age 45
Stage 2, grade 3
2.9 cm mass, no LN involvement
Waiting to start clinical trial
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4879
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 10 2014 at 7:50pm
Roxie, you just found your inner warrior, YES!!!

Ok, I have to say it. You now have me scared that they are not indicating radiation is set as part of your program. Please consider, we Tnegs don't have the luxury of cocktails of meds after treatment, it's one of the things that makes Tneg so scary. There are women on the board here who will chime in about what happens when one underestimates the sneaky, evil, aggressive ways of Tneg. So my thoughts are that if radiation is something that is offered, take it in a NY minute. And if it isn't offered I'll send you a bat to whack your doctors over the side of the head until they sign off.

Glad you're keeping a journal, I did too and I have to say that I had a grand time tossing it onto my bra burning pile to celebrate the new me!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
RoxieMom View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 08 2014
Location: Arizona
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote RoxieMom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 10 2014 at 10:49pm
Mainy 
I will keep that in mind.  I didn't know that radiation is a must for us.  Im just following what the surgeon told me.  She also told me that if Im BRCA negative, my recurrence rate will be the same whether I get a lump or mast.  Is that true?  Because I was considering a mastectomy just to keep my recurrence rate down since I thought TN had a higher rate of recurrence.  Your thoughts?  

Bottom line - I won't be quiet if they aren't doing what I think they need to do.  If they don't offer radiation, I will definitely take your bat!  Wink Thanks again for the advice.  


Edited by RoxieMom - Jul 10 2014 at 10:51pm
Dx IDC TNBC 6/23/14; age 45
Stage 2, grade 3
2.9 cm mass, no LN involvement
Waiting to start clinical trial
Back to Top
MomMom44 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 27 2014
Location: Alexandria, VA
Status: Offline
Points: 138
Post Options Post Options   Thanks (0) Thanks(0)   Quote MomMom44 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2014 at 7:23am
Roxie, Yes what you were told is true. I'm stage 1, grade 2, no lymph node involvement, 1.2cm, 4 DD AC, 12 weekly Taxol (just had #10 yesterday), had LX, and will have 6 1/2 weeks of radiation following chemo.Studies DO show that for someone like me there is no difference in survival rates LX v. MX. Of course, Braca+ would change to BMX, but fortunately I'm Braca neg. If I were you, I set up an appointment to discuss radiation with a good Radiation Onc. Best of everything with your treatment.

Paula
DX TNBC 1/14; age 66; Stage 1; Grade 2; 1.2 cm; 0/2 nodes; lumpectomy; BRAC Neg; 4 DD AC; Completed 12 weekly Taxol July 2014; Radiation August 2014
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3586
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2014 at 9:15am
Hi Roxie,

Please do not let the doctors talk you into less than the best. I'm convinced that sometimes we just get lucky. Take myself for instance. I had a mastectomy, a clinical trial of Dose Dense A/C x 4 plus Dose Dense Taxol/gemzar x 4. The trial did not call for radiation, since I'd had the mastectomy. Later I read that radiation is a good idea for us triple negative girls. Needless to say, I worried for 3 or 4 years about that.

I finally had to settle my mind on the fact that, I had a mastectomy, I had DOSE DENSE chemo treatments. I had the STANDARD OF CARE chem, plus gemzar. That was 8 years ago, and I'm thankful, but if I had to redo, I would have requested radiation.

Triple Negative is a disease that is so sneaky, has no rules or scruples, and we have to THROW THE WHOLE LOAD in the beginning. Also I see that you chemo regimen is not DOSE DENSE. DO THE RADIATION.

I guess you can tell that I am passionate about letting all know that, cutting corners is not good with triple negative. I've seen ladies with triple negative treated as though they were ER, PR or Her-2 positive. Triple negative is a totally different animal. Love you and Good Luck with all your choices and we are here to support and cheer you on.

Love and God Bless,
Lillie

Edited by Lillie - Jul 11 2014 at 9:19am
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
Back to Top
RoxieMom View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 08 2014
Location: Arizona
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote RoxieMom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2014 at 10:13am
Thanks Lillie. Im not sure exactly what dose dense means, but from what little I just read on Google, its a shortened interval between doses? Is that right? Well another thing I forgot to mention was that I will be getting Taxol, Carboplatin and Veliparib once a week for the next 12 weeks. Then I will get AC every 2/3 weeks for the next 12 weeks after that. Then we'll do the surgery and radiation (if my surgeon knows what's good for her LOL)

Thanks again Lillie.
Dx IDC TNBC 6/23/14; age 45
Stage 2, grade 3
2.9 cm mass, no LN involvement
Waiting to start clinical trial
Back to Top
susanb View Drop Down
Senior Member
Senior Member


Joined: Mar 02 2008
Location: United States
Status: Offline
Points: 107
Post Options Post Options   Thanks (0) Thanks(0)   Quote susanb Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2014 at 11:49am
Please remember that all of the studies and statistics doctors site are based on a 10 year survival rate. I went for a bi lat mastectomy because my mother's cancer came back twice over 15 years and eventually killed her, although statistically she survived her first bought of breast cancer. For me the choice was simple- I wanted to have the smallest possible chance of breast cancer returning ever. I did not have radiation and I am not sure if it is a "standard of care" with zero pos nodes and a bi lat mastectomy so you might have difficulty getting insurance to cover the radiation treatments.

But on the positive side I am now 8, yes 8 years cancer free!
Dx June 06 stage 1 at age 46, no nodes, clean margins, Ki-67 at 54, Bilateral Mastectomy, 4 rounds AC, complete hysterectomy Aug O7. Mother and Grandmother both died of breast cancer dx in their 30's.
Back to Top
RoxieMom View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 08 2014
Location: Arizona
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote RoxieMom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2014 at 12:14pm
That is awesome Susan. Thank you so much! This is all so new to me and freaks me out because the price is too high to make a mistake. I can't afford to make a mistake.
Dx IDC TNBC 6/23/14; age 45
Stage 2, grade 3
2.9 cm mass, no LN involvement
Waiting to start clinical trial
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4879
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2014 at 5:23pm
Roxie, I've said it many times here on the Forum but it's a lesson that is a good one to pass along. When all the medical jargon, all the piles of scans and percentages and stats that your team smothers you with; when you feel like you're over your head to make the best choice that will give you the gift of life...borrow from Steve Jobs. His response to researchers and idea folk when they brought him great options was to look 'em straight in the eye and say go back and do it better. Harsh, yes. But I've learned that if you respond by saying, 'give me more choices, we can do better', it annoys the whiz out of the doctors but strangely they always come up with something and often it's a better choice.

I guess you could call it a lazy woman's way of getting a 2nd opinion. But seriously, we newcomers to Tneg can't begin to know the smart questions to ask so now I just stick to, let's do better, give me more options.
Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
denise07 View Drop Down
Senior Member
Senior Member


Joined: Jun 26 2010
Location: pa
Status: Offline
Points: 990
Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2014 at 12:47am
Roxie,
Do all you can, hit it with all you have.Chemo and radiation is all we have for now to fight this monster.It is a long raod ahead but it will be worth it you will be in my prayers.
Hugs
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
Back to Top
MLindaG View Drop Down
Senior Member
Senior Member
Avatar

Joined: Feb 16 2013
Location: Pittsburgh PA
Status: Offline
Points: 376
Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2014 at 12:23am
They said the same thing to me......if BRCA negative.....no difference between having a lumpectomy or BMX.....so I went with the lumpectomy. I was lucky enough to have a Pathological Complete Response to Chemo and so far so good.
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
Back to Top
MomMom44 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 27 2014
Location: Alexandria, VA
Status: Offline
Points: 138
Post Options Post Options   Thanks (0) Thanks(0)   Quote MomMom44 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2014 at 7:27am
MLinda, I didn't think PCR is called if you have chemo post surgery (LX which I also had)? Thanks for your response!
Paula
DX TNBC 1/14; age 66; Stage 1; Grade 2; 1.2 cm; 0/2 nodes; lumpectomy; BRAC Neg; 4 DD AC; Completed 12 weekly Taxol July 2014; Radiation August 2014
Back to Top
kirby View Drop Down
Senior Member
Senior Member


Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1022
Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2014 at 11:19pm
Roxie,

In the resource section of this site are tips for various things like what to take to chemo, what to ask your dr, etc. They were done quite a few years ago so some info may not be as pertinant.

I went thru it all 13 years ago at your age. I'm a hairdresser and worked thru out so it is doable. Although they were only giving half the chemo protical of today and that will make a difference. The chemo tends to be more cumilative. If you're needing to work perhaps save some of your time for later. Not only did I need to work but it kept things feeling normal for me.

best wishes.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.