Calling all TNs

kathyrnn

Julz - I'm glad you didn't let it scare you. I think yours is definitely lower, because none of the docs could palate mine. I like your doc!!!!



Stupidboob - I'm going to have to pull my original reports. There is no testing in my current pathology report except for ER-PR-HER2 testing.

InspiredbyDolce

Is anyone taking Folic Acid as a supplement?  If so, what are the benefits or the reason you are taking it?

Titan

I am!  I probably read somewhere on here that it is a good thing to take..have been taking it since the end of chemo...I know my onc approved of it then and now...reading on the bottle it says it promotes heart and nervous system health...and also female reproductive health....not sure exactly what that has to do with breast cancer...anyone else know?

NavyMom

Hello everyone.  I'm seeing so many new names on this thread and would like to welcome all of you.

Thanks for all of your good wishes regarding my son's return to the States.  He is well and glad to be back with his family.

Nothing much else to report....I passed my 4 year survival date a few weeks back.  Pretty uneventful.  But I did by myself a bottle of Korbel to have with dinner that night.  Had to clue in DH and he was happy to share in a drink with me.  BUT next year will be different.......I am planning a party and will also be getting rid of my 10 year old car and buying a new one to celebrate the occasion.  So there, Cancer.  Take that.

JAN69

Folic Acid:  My original MO told me to buy under the tongue folic acid at Trader Joes for neuropathy.  I fortunately never had that problem so didn't take any.

Oh me, under the tongue is sub-lingual, I think.

Navy Mom - Congratulations on your milestone.  I'm almost 2 and a half.

Best wishes, warm hugs, and optimisim.  Jan

kad22

Hi everyone - haven't been on here in awhile. It has been 3 1/2 years for my survival date!

Just wondering what everyone does for check ups? My onc. just sees me every 4 months and I have no other tests done - is this the normal.

thanks,

Kelli

Worrywart9390

Kelli, I am still in treatment, but I had asked my MO what follow up I will have after chemo and radiation and she said, I will get regular mammograms, visits with her and my BS, and thats it no blood work, no pet scans.  She said we will go by any symptoms if I get them and she said studies have shown that those who get pet scans and bloodwork have the same survival rate as those who just report symptoms and I read it in many onlline articles.

I think it may depend on how advanced the cancer was to begin with if they recommend tests or not.   But I'm only guessing.

julz4

Thank you NavyMom! I have been at BCO for 5 years now after they found suspicious calcifications in my 2end Mammo at age 41. That Biopsy was B9! What I learned here helped me to find early & get the "real deal" DX last year. My best friend that I met here is now 10 years out with TNB! To you, Kad, & the others (names escape me) Congrats to those milestones of years rolling by!
PS...My BC was found in the same breast as the first biopsy a few cm's away on the side of my Lefty!

julz4

Folic Acid, Fish Oil, & CoQ10 I have been taking about 8-10 years now for my Heart. I have high blood pressure, cholesterol, & lots of family history of strokes & heart attacks on both sides....lately with my reading on BC & TNBC I am beginning to wonder if this is why my tumor was larger but mostly non-invasive?

julz4

Slowloris & Kathyrnn the worry still lurks but each hurdle makes it passable. Also I know from many BCers here & in real life that often enough they double check stuff at scan time. I go every 6 months to my Breast Surgeon Onc. & my RADS Onc. I only had to see the Med Onc twice as I had no chemo. But he told me to call if I ever had any ?'s. I had ? back about 2 months ago & he was true to his word! He called me a few days later about 7 at night! I love a team that works together for the patient!

julz4

Worrywart I think you are right. I only get mammos & an ultrasound if warranted. I go every 6 months. No blood tests except the BRCA testing at the beginning.

NavyMom

At 4 years out, I see MO every 6 mo for exam, and blood work (blood count, tumor marker and metabolic panel-that shows kidney and liver function). No scans unless there is a problem/pain.   I see BS every 6 mo and PS once a year.  And also see my PCP every 6 mo to manage Metformin and blood pressure and cholesterol.  Geez, can't forget the  gyne, the derm, and the dentist.  Oh crap forgot the eye doctor too!   I gotta stop typing....

Have a good day everyone.

stressmagnet

Still here. Ben doing chemo almost nonstop since 2008. Had 2 recurrences -- supraclavicular node and T11. Still working full time, though being bald and tired is getting me down some.

Refuse to google survival rates!

ALHusband

My wife's MO says (in an appropriate, kidding way, in front of me), "After chemo is complete, then you and I get married for a while. We'll see each other monthly for a year or two. Then every 3 months after that and then every 6 months after that. You'll call me, almost like a hypochondriac, any time you notice anything different going on in your body."

Luah

Navymom: Congrats on that big milestone. So good to know you're doing well.

5th Sib: Thanks for linking to that taxol study; first time I have seen biweekly versus weekly results... kind of reaffirmed the choice I made for me. 

ALHusband: Your wife's MO sounds like a gem. 

Welcome to the newbies. Hope everyone has a good week.

Stupidboob

Can you swim when getting radiation?

mags20487

my rad onc did not recommend the pool due to chlorine drying out the skin.  Ask your doc as I think their opinions differ

mags

Stupidboob

Navymom congrats



Stressmagnet I know that has to suck, and I hope if I ever go through it that way I can hang tight too. This is my second round and I am tired, I hope to only imagine what you been through....big hugs to you

Stupidboob

Kathryn I talked to the nurse at the surgeons office and she said similar things as to what others here have said. The Ki67 is not the whole story, and it could be just that part of the rumor, and mine was metastatic it was going to be higher. I will have to discuss it further with the oncologist.

Stupidboob

What is the main thing your docs have told you is key in winning this battle?

Stupidboob

http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-diagnosis



This will help understand alot of things

regbeach

Definitely no swimming in chlorinated pools during radiation.  Was one of the items on the list that RO gave us.

ALHusband

You can all shoot me if this has already been brought up. Here goes. Has anyone heard anything about Metformin for use in early stage TNBC treatment? I'm seeing that there have been alot of trials and it seems to be promising...but I don't think there are any trials open to new participants. What I'm thinking is that this is an established, cheap drug and maybe if it's warranted I can get Onc or PCP to prescribe "off label". Anyone have any thoughts?

JAN69

ALH I had been seeing interesting information about Metformin and cancer, so I asked my PCP what he thought.  He easily wrote an RX for it, saying that the drug had a long established reputation and was safe to take off label.  He said it has been believed for a long time that it reduces the chances for tumors to form.  (I thought, now why hadn't he told me about this years ago!)  Good luck.  J

mags20487

ther used to be an enitre thread on the use of metformin.  I asked my onc about it and took her a copy of the trials that were available and she prescribed it while on chemo.  Look back maybe 2 yrs or less.  I know we had a discussion on this thread too but it's been a while.  It was only $4 at walmart for 30 day supply.

Maggie

Titan

Navy..congrats on the 4 years out...way to go...old friend!  (and you know I don't mean old as in age..)....and having your son home...good good stuff....enjoy!

My onc wouldn't let me take metformin...said it would mess me up...he is such a crank sometimes..

I am 4 years plus 3 mos. out and I still go to the onc every 6 months and bs every six months..plus mammo every year.  the only test is a d3 test which I watch closely...I plan on going every 6 months until I die of this or something else...bc is too damn sneaky to not be checked out alot.

Dolce..I went to the ocean shortly after rads...covered up the area with a towel...did get in the pool a little and of course the hot tub..lol...mostly slept and ate all the time

slowloris

 A question for all of you who have been living with bc for a number of years... How do you balance  your fears with spending money? I was planning on a new car right before i was initially dx. needless to say, that was put on hold. I was just starting to revisit that idea when my recurrence happened. My car is 13 yrs old, and I thought "what's the point, i probably won't be around in a few years".  Then this weekend i took my girls shopping and almost bought a $60 pair of Coach flipflops. My thoughts were why not? I deserve it! And so the pendulum swings from why bother to lets spend it all!  So, let me ask you all this: What was the one thing that you spent your money on after diagnosis that you either loved or regretted? 

InspiredbyDolce

NavyMom and Kelli - Congrats on your milestones!! 

I read all your answers regarding folic acid.  What amount are you taking? 

Also, is anyone taking melantonin?  It sounds really beneficial to us!

How long did you all wait to color your hair (if you needed to color it).  I'm at 14 months past final chemo now, and wondering if it's okay to color my hair.  I found two good brands from the EWG Safe cosmetic sites that I would like to try. My wig is starting to drive me batty, it is a long hair style - similar to my original long hair.  But I'm okay with short hair now, I feel like I need to get rid of the wig to make some more progress with moving forward.

InspiredbyDolce

So we are talking about Metformin?  I also wanted to take it, but my Onc said no.  He is like Titan's Onc, lol.  I'm surprised he approved me taking live raw probiotics of 90 billion cultures.  Then, I had to get the Hep A shot 2 weeks ago due to those tainted berries from Costco.  I also thought he would not approve it, but he was in China, so his nurse approved it for me.    He mentioned that Metformin can alter the bilirubin numbers.  So I was frustrated with him, but tried to let it go. He and I have danced before on issues, so I'm sure he knows that I won't be letting it go completely yet.  My Husband jokes with me, and on the way to the quarterly visits to the Onc, I sometimes say "make sure you pray hard for me", and he says "I'm praying hard for your doctor".  LOL  Humor helps. 

Now I'm wondering what trials did you all print to take to your Onc?  I mean, he knows the drug is in trial, but were you able to find any results thus far about the trial?  I can ask my PCP for it.  He has helped manage my care and he even ordered me an x-ray when I felt concerned about a raised up area on my chest. Turns out after losing 22 pounds, your landscape looks different.  So my PCP does listen to my concerns.  I do know some PCPs will say they will prescribe it as long as the Onc approves it. 

QUESTION:

For those of you who had your PCP prescribe Metformin, did you tell your Onc that you are taking it? And if so, what has been their reaction to you getting it from the PCP providers?

GoWithTheFlow

slowloris, I bought a button making machine a few weeks after diagnosis.  My husband and I have had a great time over the last 7 months desiging and making buttons to share at chemo, radiology, and at the BS office.

Inspired, I finished chemo the 2nd week of may and am having my stubble colored tomorrow.  I'll let you know how it goes.