Calling all TNs

InspiredbyDolce

Jianchi, LPBoston mentioned something that I had neglected to --- my reconstruction was implants, which usually is only 2 surgeries (tissue expanders placement and exchange) unless you need a revision. But since I had the expanders put in at the time of my bmx, I only needed 1 additional surgery. Another thing that came to mind is that my PS had me on exercise -- I had to do this thing where I walk my hands up the wall and try to aim higher each time, etc and other mobility and range of motion exercise.  I also believe driving my vehicle that didn't have power steering qualified as exercise.  

LPBoston

Curlylocks - I want to wish you luck this coming week - stay positive - I will be thinking of you!!!!

megomendy

Thanks for the welcomes! My DCIS was estrogen and progesterone negative, so yes, I guess it was triple negative because I was told they dont test for Herceptin with DCIS. But at the time, I asked my surgeon and she said I was not triple negative. ? Maybe she just didnt want me to worry because I was "only" DCIS. It is funny how I did feel so guilty that my first cancer was "the good one" and I almost forgot about being a BC survivor half the time. Anyway, my surgeon says we may never know how long the newer cancer was there. It could have been there a year ago, or could have just appeared. I dont think that they think it is a recurrence though. Or at least that has not been mentioned at all these appts with many doctors and second opinions.

journey4life

Kathy - I'm sending healing vibes to your mom.  Please keep us posted on her recovery. 

Simple - best wishes for the coming week!

Welcome, Meg...I'm so sorry you have to fight this hateful disease for the second time. You'll get plenty of encouragement and support here.

InspiredbyDolce

Hi, typing from iPad and not good at it but couldn't wait to tell you all that I came across a post from Shiver Sept 2013 that says she is a 13 year survivor of TNBC and was diagnosed at age 25 .... She is 38 now.  Maybe you could find out more or contact her if you needed a good reference validation from someone diagnosed at a very young age! 

InspiredbyDolce

From the Living Beyond Breast Cancer site, here is the August 2013 Ask the Expert: Triple-Negative Breast Cancer Highlights

http://www.lbbc.org/Learning-From-Others/Ask-the-Expert/2013-08-Triple-Negative-Breast-Cancer-Highlights

Note:  If you haven't read the Q&A section from this site before, when you click on the link you will see all the questions upfront, and they include a link for the answer -- however you don't have to click on them one by one.  If you scroll down a little bit the questions and answers are together underneath - makes it a lot easier to read that way!

BanR

Hi Ladies

As I am about to finish my last chemo, I get this new query in my mind, which is troubling me since a few days.

I want to ask how many of you began chemo at 21 days, post surgery?

I began at 36 days since my surgeon was out and the stitches were still in place. I recently found a link which says that delaying chemo affects survival for TNBC patients and delaying chemo beyond 60 days affects survival as much as 54 percent!!!

here is the link

http://www.washingtonpost.com/national/health-scie...

Do let me know, when you started and what your Bsurgeons say.

Cocker_Spaniel

BanR I too was late starting chemo because my oncologist was away.  But I am doing well.  I get sick of the stats because they do not mean anything really and everyone is different.  You just keep going girl and you will get there late chemo or not.     

Jianchi

BanR: I started chrmo 35 days after surgery (gosh we are so similar!). I have read the article before, and as Cocker said and I agree, stats is just a guidline, and everybody is different.

Inspired,  thank you for sharing the information on a 13 year out TNBC diagnosed at 25 years old!

BanR

Thats true, cocker. Some relief to know that there are people you dont begin chemo within 30 days yet do well. I am so happy to see you doing so well!!! for women like me who get diagnosed under 40, tnbc behaves more aggressively than women who get diagnosed after 50.. just get worried on an off whenever i come across something new.

am looking forward to other posts which say that they began chemo late, yet doing fine.

BanR

thanks Jianchi for the reply. Do discuss this with your oncologist next time you meet. True, we are so similar..as in age at diagnosis, type of tumor, size of tumor, grade of tumor, type of treatment, date of treatment and i think your son and my daughter are of the same age too!!! Lol!!! 

Jianchi

BanR - I will see my MO tomorrow, andI will sure raise this issue with him.  I think he mentioned there is a window between surgery and chemo, and it is 90 days ( if I remember correctly).  Tomorrow, I will ask him to test my VD level, and see what he says.  Have you had that tested?

BanR

thanks inspired for the sharing info about the lady who is 13 year out.

infact i started a thread in triple negative forum called.. long term survivors

and i was pleasantly surprised to see so many replies. There is a lady who is a 23 year, 4 times tnbc survivor. there is one more who is a 20 year survivor. and many more.... I came across an article, which i posted there, about a lady who got diagnosed at 27 and is now around 77... she is a 50 year survivor( i guess it was tnbc, since at 27 the probability of getting tnbc is higher than hormone positive cancers).

BanR

Jianchi, what is VD level? 

Jianchi

Vitamin D level.  Many day that BC is linked with low Vitamin D level.

BanR

yes..i got it checked mid way. My vit level is 13  very low. Normal should be 30. 

does the same chemo work better when vit d level is normal?

Jianchi

I am not aware that chemo works better when D level is normal.  I am taking Vitamin D now.  Were you suggested to take VD?

Cocker_Spaniel

BanR  your post confirmed that stats are not all they are cracked up to be.  Half of the info is so out of date anyway.  They only tell you about the percentages of this and that and so little of it applies to us.  Your story of the long termer's is what I want to hear about because they give us so much hope and it keeps us going. I also get so sick of the articles saying "new hope for TNBC" or "this is what TNBC has been waiting for" then nothing comes of it.  We need a cure now so don't tell us something which may  and usually don't happen.        

jenjenl

I started chemo 5 weeks after my surgery.  Initial pathology report said i was estrogen positive, had the oncotype test done and found out that I was TN.  Happywe did tthe test otherwise I may have been under treated.   

BanR

thats true cocker. Once they begin trials, it typically takes 15 years for it to come into the system. Dont know when a targetted therapy will come in!! We need it asap... tnbc spreads mysteriously and the scariest part is, it mets to brain in particular and we are losing a lot of wonderful women to this disease.

jenjenl: what a lucky escape you had!!!

simplelife4real

Cocker, I get tired of every single TNBC article starting out with saying things like "poor prognosis" and "agressive".  I was so freaked out by those terms in the beginning that I couldn't even do any research on the internet.  I actually asked my SIL to be my "official researcher" and feed me information in the beginning.  Now, I just skim over all that stuff at the beginning of each article and see what the article really has to say.  I agree that most articles describe very early research that may likely never amount to anything....or will become something well past the 5 year window for any of us currently diagnosed with TNBC.

Speaking of long-term survivors, I know a lady that is six years out now, almost seven.  She used to be very active on bc.org.  I sent her the link to this thread yesterday and asked her to pop in and post here.  I "met" her through the Hope Connection at Vanderbilt which connects up cancer patients in treatment with others that are further out.  I specifically asked to be connected up with someone with TNBC and the next day, I received a call from a six year survivor with TNBC.  Wow, did that give me hope!  We talk on the phone from time to time, and it's been a big help to me along the way.

simplelife4real

Speaking of early research and TNBC, I can't remember if anyone has posted on this thread the info on melatonin and TNBC.  I started taking melatonin a couple weeks ago after I finished chemo because I would wake up in the middle of the night and was having trouble falling back to sleep.  The melatonin is like magic for me....on nights I remember to take it, I sleep all night long.  Shortly after starting it, I came across info like this.

http://www.sciencedaily.com/releases/2014/01/14012...

Nice to know, that the melatonin may be doing double duty for me.   The article doesn't indicate what doses may be effective for TNBC.

BanR

thats good info simple. am having trouble sleeping because of the continuous itchy sensation under my feet due to paclitaxel. i have been given anti allergens and something for nerve too but nothing seems to help much. instead of the sleeping tablet, i better take this then. 

BanR

jianchi: yes, he recently began vit d supplements. he says in case it induces nausea, i can wait till chemo is over and then start.

encyclias

There's a very long thread at the TNBC Foundation Forum called 'Survivors Needed' with 19 pages of posts by TN survivors.  This is a link to the first page.

http://forum.tnbcfoundation.org/survivors-needed_topic8221.html

Reading it over the past year or so has calmed down a lot of my fears.

Hugs to all,

Carol

BreezyH

I just saw the post about how soon after surgery did chemo start? I knew time was a factor but I just checked the calendar and I started 42 days after surgery! Wow! I was originally scheduled to start 31 days later but my reconstruction didn't go as planned and I went in for some revisions from necrotic skin and ended up with sepsis. Yep, sepsis! I ended up going back into to the hospital and that delayed chemo. It all seems so long ago but it all started only 6 months ago.

Also, a good place to find positive survivor stories-TNBC foundation Facebook group. There is a private group and a lot of survivors hang around on it. I love reading the 5 year plus ladies post!

Good luck to everyone with upcoming surgeries!

BanR

went through the thread..thanks encyclias..

kathyrnn

Thank you everyone for your prayers, Mom is doing well. 

LP- NH stood for nursing home.

Simple - that is great that they hooked you up with a survivor.

Meg - I understand your cancer wasn't invasive but I don't understand how it would hurt to test it for HER2?  If they have found you to be ER- and PR- and haven't tested for HER2........how can they say your not TN?  Any opinions on this ladies?

My biopsies have come back negative .....yea!.....but I'm guardedly optimistic and I hope the reason why will make you laugh.

I have a friend that died from BC.  One of her hobbies was breeding birds.  When I was first diagnosed in 2011, I had barn swallows come build a nest in the garage. I laughed because it reminded me of my friend.  I told her thanks for the reminder, and that I wouldn't make the treatment mistakes she made (she didn't do chemo).

The next year they didn't come back, despite the fact I left the nest there.

2013 when I was diagnosed with the relapse.....yup they were back!

This week I have a sparrow who has decided to make the garage home.  I didn't think anything of it when he got trapped in there the first time, I just opened the door and sent him on his way.  The next morning, when I left for my biopsies......he was back sitting on the ledge chirping at me. (Shit!!!!)  Now he's sitting on the kitchen door chirping at me.  I've come to think of them as my early warning system.......and this little shit is making me nervous as hell, lol

LPBoston

Hi - I began 6 weeks after my surgery because they originally told me I didn't need chemo because they had no idea what type of cancer I had due to the fact they couldn't get good readings after a mammo, ultrasound, mri and biopsy so it was all precautionary because I had cancer before on the opposite side of the breast which was not TNBC.  This time it was TNBC.  I guess every surgeon and oncologist is different on when they schedule you.

InspiredbyDolce

My vitamin D level was 12 at diagnosis.  I started supplements and after 8 months was at only 40, so I increased to 6,000 i.u. a day to try to get it into the 60s. 

I started chemo on Day 29, but do remember my MO's office speaking to me with urgency when on Day 21 my port surgery hadn't been scheduled yet.

Regarding the article on chemo delays ... well the statistics at 60 days ... 54% risk of recurrence... let's stop for a moment and consider a few things.  The article did not tell us what stage these women were in who delayed chemo ... they could also have been older and fragile, not recovered well from surgery, or had a serious reason why their chemo was delayed that may have contributed to their overall health and survival ... and it doesn't list other variables that could have made impacted their overall survival benefit - things that go into the pathology report in addition to additional therapies, targeted or otherwise.

I think with all of us that our medical teams had an intricate picture of what was going on with each of our cases, and that they started chemo within a timeframe that provided the maximum amount of benefit.

I would not worry too much ... if you can help it.  I had actually come across a reference material this weekend online that mentioned chemo is usually started within 30-60 days.  Remember too, that if your body is still healing from surgery, your body might not be able to absorb the full effect of the chemo if you started it too soon.

I think some thought to be paired with the article, which they did not mention, is how long did the patients wait between diagnosis and surgery?  Could it be that the delay between diagnosis and surgery contributed to a higher risk of relapse, even with chemo regardless of when chemo was to start? Could that be where the risk hazard increased?

I felt the article was a bit general, and would rather have seen it contain the exact breakdown.  What type of bc, what day did they start, tumor size, nodal involvement status, age, etc. For me, I would have preferred to see this extra key criteria disclosed in the article and broken down into a chart.

I will cut and paste some of the stats and see if it pulls up an official study that provides more detail.  If I find anything additional about this article, I will post here.