Triple negative from Brazil (T3 Nx M0)

HAve they prescribed her ativan or lorazapam-anti-anxiety meds? I can't take the steroids without it, they make me too shaky and send me into a panic attack. Some of the anti nausea medicines do the same thing to me-cause anxiety and make me shake, it's a weird feeling.

I'm sorry Bruno....I'm a little late chiming in.  I've read everything and it sounds like you are doing an amazing job taking care of your mom, you're so well informed.  I'm not triple neg. but I did feel my tumor shrink during chemo, but I think it was round 2-3.  I also had inflammatory breast cancer (IBC) and I saw that leave also during chemo.  I had internal + lymph nodes as well and chemo along with radiation took care of those.  My first round of AC was terrible, my nausea came more from motion (vertigo) I couldn't even watch TV.  So starting round 2 I used a motion sickness patch behind my ear and it worked great, I would place it there about an hour before each round and would wear it until the next day....it was a God sent.  Each round got better and better too, I think it hits you hard and your body isn't use to it.  I'm so glad you found this site and the other girls have been supporting you.  It will get better, I'm almost a year out and I'm doing great and your mom will too. She is at the worst place right now, the beginning with all the test and waiting, the unknown is very scary I was a complete basketcase.  Stay strong and come here often we're here for you.

(((Hugs))) Bruno!

I know this has been terribly hard for you too.  Just try to remember what I said before "your Mom is NOT a statistic"---so whatever that one doc told you just try to shove it out of your mind, that your Mom is not going to be that person.  

I can relate to dumb things docs say sometimes.  My initial dx was done by a general surgeon.  When I went in for my pathology report after he told me there was cancer he asked me if I already had life insurance---within 5 minutes of telling me I had BC!  WTF?????  I look back now and HOPE what he meant was it could be harder to get life insurance now, but damn at the time I thought he was telling me I was going to die!  Needless to say I have never gone back to that doc.  SHEESH!   The ONE thing he did suggest (and what your Mom is doing )and wish now I had done was to get the chemo first before surgery to shrink the tumor.  I was SO freaked out at the time and had never heard of anyone doing that and after going to Johns Hopkins for a consult they said no, we would do surgery first.  Well I had to wait 7 weeks for that surgery at JH and had one HUGE tumor plus other smaller ones.  Perhaps the GS was right on that one.  Oh well, like I said, we can't change the past can we?  Just keep on keepin on!

Love,

Sharon

Bruno - you are so caring, your mom is truly blessed!

I am Stage IIIc TN - I can relate to you and your mom's fears, it is very scary.  But, my doctor is not about to give up on me, and she thinks we have a shot at this.  So does your mom!!

About the supraclavicular nodes - mine popped up after chemo and surgery, and rads took them out.  I can still feel one of them, but it is soft, and likely scar tissue.  So if chemo doesn't get every last cancer cell, radiation is very effective!

AC at standard dose IS the big gun - too much and you risk heart issues.  But keep in mind that TNs actually respond better to the taxanes, so you might see some change on AC (I had a 50% overall reduction), but the second half of her treatment might be what really knocks it out!  Will her doctors monitor her progress with scans to make sure?  I would push for that - really hard - so that if there is no change, they can move to a different chemo.  The platins (Cisplatin especially) have also shown a lot of promise in TN.  I know you are not in the US, so I'm not quite sure how they do things.

Also, my doctor has put me on Xeloda as a "preventative" after my surgery and radiation.  It is a very manageable chemo, in pill form, and side effects aren't nearly as brutal.  Our hope is that it knocks out the small stuff we can't see.  Perhaps this might be an option after everything?

Many doctors say "no antioxidants," but I think that is starting to be disproved.  Dr. Keith Block, who runs an integrative cancer center, argues for their use during chemo based on research.  His book, "Life Over Cancer," is great - it offers advice on diet and exercise, some a bit extreme, but it may be something to read and take what you can from it.

Diet and exercise are very important for TN.  Some studies have shown a decrease in recurrence as high as 40% when fat intake is less than 20% of calories, and exericse is at about 5 hours/week.  Now, during chemo, that is VERY hard.  But afterwards, try and encourage your mother to make some changes in this respect, if need be.  It is the one thing I feel I actually have control over - and it helps me feel better.  I'm not perfect - gotta live life! - but definitely better.

Hugs to you and your mother.  Such a scary disease.  I will keep her in my thoughts and fingers crossed that she responds well to her chemo.  Best wishes.

Hi Bruno,

Avastin is a controversial drug, and I don't think your doctor will approve it, my treatments will probably stop once the FDA takes away their approval.  It is a drug that can come with some significant side effects - and doesn't work for everyone.  This isn't a battle I would fight with your mom's doctor I think.

Cisplatin in particular appears to be effective with TN, and is the drug that most doctors offer if the cancer hasn't responded well to initial chemo.  I did Carboplatin before surgery, and am a rare example of someone who did not respond, so it wouldn't make sense for me personally to try again.  Cisplatin can be a tough drug to tolerate, but Carboplatin was pretty easy on me (remember, everyone responds differently!) - you and your mother have to assess if she can handle it.  But that is the horse before the cart - let's assume she will respond great to the treatment they are giving her!!

I technically have "recurrent" disease, as I had lymph nodes show up positive after chemo and surgery.  Because of this, my doctor was able to prescribe Xeloda.  I am not sure if your mom's doctors would be able to do this until she has a "recurrence."

I had 33 rads in four fields - chest wall, axilla, supraclavicular, and intrammary.  I then had another 15 treatments on a specific supraclavicular node that popped up.  I used both "Jean's Cream" and "Udderly Smooth" with urea - you can get both online.  I put it on in the AM, had rads in the afternoon, and applied the cream another 3-4 times/day.  I had no skin breakdown, just red, like a sunburn. 

One thing about TN - if it responds very well to chemo, then chances improve significantly.  So I would recommend you see how your mom does on AC and Taxol - be sure to monitor - and then if things aren't as good after surgery, you can push for more therapy.  In the meantime, make sure she is eating, drinking and maximizing her health while she is going through this.  You are such a great son!!

Glad to hear everything is going good.  It will continue to get even better once chemo is done.  Hang in there. 

Boo I never had bone pain w/Taxol.  It was MUCH easier than the A/C for me!  I did lose what was left of my eyebrows and lashes during the end of it, but they came back very quickly.  I only had bad bone pain after the Emend shot during the A/C.

Sharon

So glad to hear the chemo is doing it's job!  She will need time to recuperate from the surgery before rads, but since I had mine after surgery I don't know what the typical time frame is.  2 months sounds about right as she will have drains that will need to come out first, although 3 sounds kind of long.  Not sure.  I'm sure someone here has the info you need though. 

(((Hugs)))

Sharon