Calling all TNs

Allydp

Thanks so much ladies for your opinions and also for the reassurance about the pain. I really appreciate it. I saw a rad onc at the University of Michigan today who's clinical interest is TNBC rads. She just concluded a retrospective study with a doctor in Germany who is apparently one of the doctors leading the charge for neoadjuvant chemo for TNBC. She said they just presented the data to a committee last week and will be publishing the report soon. I can't remember how many people were part of the data, but they looked at all BC and then broke out TNBC treated with neoadjuvant chemo. Those who had a complete response had a recurrence rate of 6%, which was much better than they anticipated. So bottom line, prior to this study, she would have advised against rads, but supported me in my decision to do it. However, after collecting and analyzing this data she would in no way advise rads for me because of the complete response. She said with a risk of recurrence around 6% the benefit would be negligible. She also added that the data didn't look specifically at positive or negative nodes, so being node negative gives me an even greater advantage. She told me to finish up my surgeries, heal from chemo and go live my life. I'm now leaning towards not doing it, but still have yet to make a final decision. I'm giving myself until the 1st!

TifJ

Red, I was given Emend before each infusion as well, but I was also prescribed an Emend patch that I put behind my ear the day before treatment and removed the day after. My stomach felt "yucky", but never did I feel I was going to throw up. I also had Taxotere and Cytoxan.

Allydp

Red - I had both of those drugs and I never had any nausea. I really hope they work for you and prevent the nausea going forward. 

Cocker_Spaniel

Red I also had EMEND and it was wonderful. I don't think I could have managed without that wonder drug. I took it for three days, the day of infusion and then the following two days. I was also given Ondansetron but I'm not sure whether you have it in your country or it may be under a different name.  The only trouble with Ondansetron was the terrible constipation but for me that was such a small problem compared to throwing up.  

Lisaj514

ally, very very interesting information regarding rads, tn, neoadjuvant. Thanks for sharing. If you have links to articles or research regarding this info your doctor shared it may be very helpful for others starting out

Nettie1964

My pre chemo meds via IV were..emend, zofran (both for nausea), benadryl and steroids. 

I was never sick.

VerukaNY

Hi Red!  I had both Aloxi and Emend in my chemo cocktail....and the nausea was very minimal after infusion.  Easily handled with a zofran maybe once a day x 2 days.  Hope it works for you.

redheeledwomen

Thanks for the input Ladies.

Today I don't feel too bad.  I am taking my steroid Dexamethasone for the remainder of the week (even though I normally only take them the day before chemo and the day after) and Zofran twice a day for the rest of the week and Compazine for breakthough nausea if it occurs.  The Pharmacy didn't give me an additional script for Emend for the week.  I will make sure to go back to the hospital for IV if I start to feel nauseated -I just found out yesterday that I could have done that all along .  One thing I have noticed is the chemopause just got worse.  I use to only lightly perspire when I had hot flashes.  Now Im actually sweating and others can see it.  I sure hope this goes away in the next few months.  Yesterday was my last chemo tx and I plan on doing a detox in a few weeks.  Just ready to get on with life.

Allydp

Red - huge congrats on your final chemo treatment yesterday!! As you're toughing out the effects of this last round just keep telling yourself last one, last one! And glad to hear you have the appropriate meds this time to combat that nausea. Hang in there. 

Nettie1964

Had checkup with Surgeon today, latest Mammo all good, physical exam all good, released for one year!!  Yay, but nervous!  But I will still see my MO on November 4 and will see what schedule he puts me on!!

I do have one question and this may not be the correct thread, but just wondering if any ladies that had lumpectomy, chemo and rads had a recurrence or mets that appeared that was no where around the breast?  In other words, can having clean mammos and exam overlook possible mets?  Just curious!

Radical2Squared

my vote is for no rads ally... I prefer to have that weapon in my pocket to use later in life if it's needed...we have a lot more years to get through!

Luah

Nettie: Mets, if they occur, can show up anywhere in the body, typically for TN is soft tissue like liver, lungs, brain. So no, a clinical exam and mammo do not show that. While it's a very scary prospect -- and all of us go through that fear for the first year or two following treatment -- most early stage TNs do not recur, nor get mets. My advice is to be sensibly vigilant; if you experience unusual, unexplained symptoms for more than 2 weeks, then check it out with your onc. 

Lisaj514

red, make sure with all the anti nausea meds you are taking, to take something to combat constipation. That can be a real pain in the ass, literally. Don't forget to take it daily along with high fiber, prunes etc. it can be a serious problem, really! Don't forget this!! Ya on your last chemo! Happy dance for you. Tell us about the detox when you can

And to Joan lunden, TN sister, you go girl. On magazine cover without her wig, looking beautiful

redheeledwomen

Thanks for the advise Lisaj514

Nettie1964

Luah, thanks for the response!  This is why I don't really understand why there isn't more monitoring or scans for us!  The only long term issue I've had is back pain!  And all the doctors are saying its issues that the treatment has caused mixed in with my scoliosis and none of them will help me get insurance approval for a scan!  My pain is NOT constant, it is NOT worse at night, it is NOT worse upon exercise, but it is worse with certain movements and it is worse if I sit for long periods!  And the "spot" that I feel it the most, I can always "feel" that spot, even when it is not hurting!  Just keeps me worried, but when asked if the pain is constant, it is NOT, and there are some days that it doesn't hurt at all unless I try to shrug by shoulders together in the back! 

Anyway, I was just curious as to why we aren't monitored more closely!

lilyrose53

Nettie1964,

I hear you on the worry.  I have had rib pain on one side for about 6 weeks.  I told my MO about it a few weeks ago and he did order a CT scan.  But he was also checking nodes that were in my lungs.  The scan came back clear.  Thank goodness.  But the pain has not gone away.  He thinks it will subside in time, as a lot of women tell him of random aches and pains after chemo.  It still is worrisome to me.  I hope yours goes away.

Ally,

I was not given a choice about rads.  Three doctors told me I should have them, although in the end, it is the patient's choice.  I started mine today.  We each need to choose what we feel is best.  Whatever you decide, just feel like you made a good decision, and then let it go.

Red,

I had aloxi and emend in my IV with each infusion of A/C.  It helped a lot, but I still needed to take Zofran for a few days after each treatment.

redheeledwomen

Hi Ladies,

Today is Thursday and I feel a little queasy but better than I have after my other chemo txs.  I am very fatigued which makes it hard to walk.  But, I'm managing.  My txs have always been on Tuesdays and by Fridays I am totally out of it.  I am hoping tomorrow is a breeze since I am taking three anti nausea drugs.  My biggest concern is my fluid intake.  I got so dehydrated after tx #3 because I was just to sick to drink anything.  This lead to sores inside and outside my mouth.  And the chemopause just really ramped up.  I am sweating like crazy taking multi showers.  We will see how I feel tomorrow. 

Have a good evening all!!

okkim

Dx September 4 stage 2a no lymph node involvement. Found lump in February. Radiologist said ultrasound did not look like cancer, check back in six months. Some passion so I went back and got dx. Start chemo in two weeks then lumpectomy. Still need ct and bone scan next week. It's scary but it looks like some real survivors out there. Everyone says I will beat it, which I will, it's just the fight that worries me. 

Radical2Squared

red....looking better so far!

Okkim, it's a different journey for everyone, but we share a common thread. We find out how strong we are and we go through hell. The thing is, it's very beatable. It's not fun getting there though!

Stay here and hang with us. Use this place to vent your big fears and worst frustrations. Everyone goes up and down, but there is always someone here to lift you back up!

You will do this and you will be fine...it's all the little stuff in the middle that is the challenge!

simplelife4real

Red, congratulations on your last chemo.  That's a big milestone.

okkim, I'm sorry to hear about your recent diagnosis, but I'm glad you found us.  I also hope you join the chemo thread for the month you start chemo.  Both threads can be a huge help as you move forward.

Speaking of breastcancer.org chemo threads.  I'm getting to meet 8 of the other ladies from my Sept. 2013 chemo thread out in Las Vegas in two weeks!  After  we finished our chemo, about 30 of us from the thread started up a private FB group (anyone from the Sept. 2013 group is welcome to join the FB group).  We decided to try to have annual meetups.  Our first meetup is coming up.  We all have short hair, but are excited about showing it off.  I think it's going to be so much fun.  Our FB group has become very active and turned into a survivorship support group.

MomMom

Simple, How wonderful that you will get to meet your virtual friends!!  I think that is absolutely awesome!!

Wednesday was my last rad!  Yay!!  I'm so happy that my official treatment is now OVER!!  It feels weird to not be driving myself to the hospital every morning. 

 

placid44

MomMom,

Congrats!!

Radical2Squared

simple,

It's going to be an awesome trip! Have a blast!

Allydp

Okkim - the first month is a whirlwind, but once you get a plan in place and get those clear scans out of the way, you'll find your fight mode and get down to business. We're all here for you. 

Simple - what an amazing experience you will all have together! Have a wonderful time!

MomMom - congrats!

Well, I've decided not to do rads. I got 5 opinions between various doctors and all said no. I scheduled my BSO/hysterectomy today for Oct 23. (Since I have the BRCA2 gene.) Once I'm through that I can hopefully have my exchange before the new year and start 2015 with a clean slate!

beth_bailey

hello - I'm Beth, age 53 and I was just diagnosed with TNBC on Monday this week.  I found a lump a couple of weeks age in my right breast.  I contacted my PCP who did a breast exan and scheduled me for diagnostic mammogram/US/and of course biopsy if needed for the next week.  So on Thursday 9/18/14 I had the mamm, us and a biopsy.  Monday this week I got the call - yes, it is breast cancer but I really can't give you much information though I've scheduled you to come in and see the specialist on Thursday 9/25/14 and was told it was a good idea to bring an extra set of ears.  So my extra ears and I were presented with the TN dx and of course so much information that my head still seems to be on overload.  I'm at grade 3.  I have no heath history available as I was adopted as an infant so genetic counseling appointment is scheduled for next week.  The plan as it stands is to have chemo first, starting within the next 2 weeks in an attempt to shrink the tumor and hopefully (if the BRAC is negative) a lumpectomy & radiation.  Just got a call scheduling the port placement for 10/6/14....things still seem a bit unreal, I have 2 adult children who I am telling on Sunday then I need to make the call I dread to my parents who are in their mid 80s to tell them.  My mother wrote the book on worrying so just thinking about telling them (I live in Michigan, they in North Carolina) gives me a sicker feeling than I had when I heard "it is breast cancer" 

Radical2Squared

Beth,

Unfortunately, welcome to the club. Grade 3 just means it's a real good thing you caught it...so a big congratulations on that part!

I feel for you on telling mom. She is still my biggest supporter but most difficult worrier... I'm always conflicted about her involvement.

Do yourself a favor and don't "Google" too much. There is plenty of information right on this site and much of the stuff on the net is out of date or incorrect.

We're here for you for questions, concerns, notching and joys. There are a lot of ladies here that are the best support system one could ever want!

okkim

beth your story /timing is on line with mine. I start chemo a week from yesterday. I already have my port. That was really scary but wasn't so bad after all. Go next week for more scans but so far nothing has shown in lymph nodes. Right now they say it's stage 2a. 

Telling my 86 year old mother was probably a mistake. I waited until I knew what we were dealing with, but now the questions never stop, which is why I didn't tell her earlier. I know she's worried, but I don't need her ocd/dementia right now, but I will be patient.

The lump hurts sometimes. Having a hard time getting comfortable at night ...lump on one side, port on the other. Not a good back sleeper. Benadryl helps knock me out but otc pain relievers don't help much. Suggestions?

Radical2Squared

okkim,

More mom suggestions...

Since she is older and will not be taking you to your appointments etc. Even though she is your mom and you love her, share with her similar to how you would share with a co-worker. 

Example: Instead of saying, "I am stage 2a as of right now but go for scans next week...blah, blah, blah..."

Simply say, the doctors are going to do scans to determine the best course of treatment for me. These doctor's are wonderful and they explained that everyone is different so once they are exactly sure how to proceed with my personal case, I will start chemo and them have surgery to remove any tumor cells that are left."

Keep it simple and smile through it. Show her how strong you are and how confident you are in your doctor's even if you are not. There are other friends and family you can trust with the details and your worries. All your mom really NEEDS to know is that you are doing well and you will be fine. After all, isn't that what every mom wants?

It may seem mean to hide details from anyone, but you will find that some people just need to hear you are doing well and others are much more helpful and supportive when you are not. Mom is a distance away and, though she'd love to, she's really not in the position to be the great big help she was when you were 10 and had a scraped knee.

PeggySull

Beth, we have all been right in your shoes and what helped most was getting a plan of action and starting on it.  You are on that road.  Reading posts here and continuing to post yourself will also help.  You may start in this forum and add other forums such as Chemotherapy October 2014 under Help Me Get Through Treatment.  Hang around here.

Okkim,

Lidocaine, prescription strength is often used around the port a half hour prior to infusion.  It numbs the area.    It might be helpful on the lump as well as you are trying to get to sleep.

As the chemo starts to shrink the lump you will feel better physically and emotionally.

Hugs,

Peggy

Nettie1964

Evertime I read about ladies getting scans, I become very concerned!!  I never had any scans prior to treatment and haven't had any since!  Makes for a very worrisome me!!