Vitamins for us Trip Negs....????

Traci-----TripNeg

Hey Ladies, (& Gentlemen)
Any advise on what you guys are taking as far as Vitamins? My onc has me scared to death with the trip neg thing...what to take and what not to take. For example: My roommate take something to help menopause it's an estrogen booster or something. Sorry I can't remember the name. My onc said absolutely NO to me taking this.
Thanks for any advise.
Traci

Indigoblue

Traci,

The vitamin thing has had me so confused, I don't know if I did or didn't do the right things. Oncologist told me to take vitamin e, later learned it is bad during chemo. He told me to take one a day vitamins; read later, they contain biotin...he said using airborne was fine, and when I felt a cold coming on, which was frequent, I did use the airborne. I couldn't keep the one a days down, if I could swallow them; gigantic things. Ended up not taking the vitamin e because they seemed repulsive. I am anemic, and wanted to take the ql0 for heart protection...they onc said no. There were a lot of anit oxidants we were told not to use, as they would interfere with the chemo/later rads treatments. I ate a lot of homemade soup; especially with lentils, black beans, cabbage, chicken broth, and fresh veggies. Haven't cooked since neuropathy affected hands...keep dropping things, cutting myself, and burning myself. If you hear of a perfecto vitamin and a good supplement to regain energy, please let me know!

I keep craving sugar and carbs, chemobrain induced as willpower and clear thinking have gone completely since last November. Onc. has some reason why Neuontin it "out" of me, so I tried the Mitox of whatever it's called, Vitamin B's 6, 12, and something else, but I already was having intestinal problems; those didn't help anything, and they made me sick.

Hope you find a good one soon!

Thanks

Indi

playwriter

i am a tripneg 2 months out of chemo. i didn't take any supplements during chemo as i didn't want to take any chances.
i don't know of any vitamins specific to triple negs. i take a whole foods supplement (found in health stores), thisylyn, lycopom, wheat grass tablets, flaxseed oil gelcaps and cinnamon gelcaps.
thistle, lycopene, and pomegranate are supposed to help fight cancer, so those first two have those. there's a broccoli supplement as well, but i eat broccoli almost every day.
cinnamon helps your body metabolize sugar. wheat grass cleans your blood. flaxseed oil is a good antioxidant.
there's also turmeric, which is a cancer fighting thing. it's avlbl in gelcaps as well.

Traci-----TripNeg

Thanks for the info girls.

Playwright, are you a football fan? Can't believe your Texans beat my Cowboys. : (
I was born and raised in TX)
Did your hair fall out? If so, how much has it grown? Sorry to get off subject.....

They had the "ask the pro's conference" on this but some of the answers were confusing. All I really got out of it was: limited Vit E and NO p 450 Enzyme's. i.e. St John's Wart.

Hope you guys have a great day.
: ) Traci

CalGal

Hi all -

I'm also a BRCA1 triple negative.

Post-chemo (just due to changing insurance, nothing else), I've been seeing an integrative oncologist at a major cancer center. His specialty is women undergoing AC. Unfortunately, I did not see him at that time.

He's big on supplements. The main issue being strengthening one's immune system. He emphasizzes dairy-free and gluten (wheat) free diets.

For me, as a trip neg, he recommended the following:

Ultra Preventative Beta w/o copper;
Tri-En-All 400
ProOmega (fish oil)
Natural C Plus 500
Ultra Coenzyme Q10
Ayur-Curcumin
A.H.C.C.
Mycoceutics
Melatonin

If I didn't have a high calcium level, he would have also rec'd Calcigard and Vit D.

While I'm glad I started a clinical trial (PARP Inhibitor), I'm not supposed to take supplements while I'm on it.

CalGal

Traci-----TripNeg

This is awesome info CalGal. Exactly what I was looking for. Thank you so much.
How are you?? I saw you on another post and was hoping that you are doing good. That's great your in a trial!!
You are in my thoughts always.
: ) Traci

CalGal

Hi Traci -

Glad the info was helpful. My integ onc is big on Douglas Laboratories, since he says that you can count on high quality from them ... and you're getting what you pay for. He also says that you can find the supp's cheaper by other manufacturers.

The PARP inhibitor trial is for those who are BRCA1 or BRCA2 with mets. (You don't have to be a trip neg, but you do have to be BRCA). I have weekly bloodwork, but won't know how effective it is until I have my CT scan at week 8 (and hopefully, my lung met will be gone!)

Thanks for the good wishes.

CalGal

twink

Funny you should ask. I chronicled my supplements in a recent blog entry here: http://360.yahoo.com/whata_day

I think diet though is more important than supplements. I eat lots of whole grains, flax, fresh fruit and veg, very little red meat and alcohol (regardless of the results of that recent dietary study). There was a study that showed a very favorable impact of a low-fat diet on recurrence rates for triple negs (I want to say recurrence was reduced by 42% compared to other stats....must go and find that study again). In any case, supplements don't offset a bad diet.

myrnaincabc

HI all,
I take ground flax every morning, it is good for triple negs, I will ask Nosurrender she know why. Also if you take a probiotic it will really help you gut build natural bacteria again. Then it's vit c, e, cq10, fish oil,Curcumin, and grape seed, for me.
exercise, low fat, no dairy, rice milk, lots of greens, little bit of chicken, lots of grains, and beans yeaaaaaaaa
I'm im a little over a year out, triple neg, grade 3, stage one, surgery, chemo, rads
best to all
Myrna

playwriter

Traci, i pay sporadic attention to football. DH loves the Vikes, so i follow the vikes more than the Texans. i can't blv they beat the cowboys, either!

that is SO good to know about the no st. john's wort! i've been taking it pretty much every day to offset my crankiness.

yes, my hair fell out. i've got about 1/2" sporadic stubble right now, but i have a shadow, so i think more hair is fixing to come in.

Traci-----TripNeg

Hey Ladies,

Well it's late again.....man, I can't wait to be able to sleep again.

I was concerned about flax seed oil (Myrna, is that different from "ground flax"??) because CTG said she doesn't take it because it has estrogen and she is er+ and doens't need anymore. I am so confused. I thought we weren't supposed to add estrogen because we were negative. GAWD...............this is so frustrating. I wish I had someone to go along with me to my appts to write this stuff down. Hence forward, I'm taking pen and paper.

Twink, I wish I had your dicsipline (sp?) when it comes to diet. I am trying but...it's hard and....I'm a winoholic.  Can hardly go a nite without a glass of wine. And, the chemo got me so fat, it's hard to get motivated. Especially cuz I'm still bald.

o.k.....done with my pity party. Thanks again for all the tips.

Nighty nite. Man, I hope I can sleep........

Traci

ps.......Playwriter, Cowboys won tonight in an awesome game with the Giants!! I'm so glad football season is back!!!!!

twink

Ha Traci...me disciplined?  I guess I put up a good front, eh?  I like my wine too.  Best of all though are my Friday night martinis...I'm currently obsessed with espresso martinis.  I've just figured out that alcohol is not much of a concern for me, being trip neg.  I'll still go lite but I'm refusing to give it up completely.

HollyHopes

I HATE that diet and exercise are contributing factors to our disease.  It makes me blame myself....which is really my boyfriend's job - to blame me! He's an MD and has been after me for years to lose weight and get fit and knock off the alcohol...I love my glass of wine...

So.. I am freaking out because during chemo I lost 30+ lbs and now they appear to be making a comeback. I do not want to diet or eat a gazillion weird foods...so is it MY fault if it comes back???  Guess so...

SIGH

FloridaLady

I have taken supplements and vitamins after the failure of first chemo tx.  I can repair my blood in 4 to 6 days after chemo.  And worked through 21 mths of tx.  I have no mets.  I most have done something right???

Traci-----TripNeg

Twink,

Cool website but...how do I find the vitamin part?

Also, we are anxiously awaiting your answer to a question on the May chemo girls thread.

: ) Traci

Holly, I gained 30 lbs.....not sure which is worse. Good luck girl!

twink

Oooh Traci...where on the May Chemo thread (I plead chemo brain)?  I didn't mark that convo as a favorite and have no idea what I was discussing.

Traci-----TripNeg

Twink....now I can't find it. (I plead chemo brain!) You made a comment about your pic and we all wanted to know if it was recent. Cuz... Your hair is short but really, really, long and we wanted to know if that was post chemo ......and for how long.

: ) Traci

ps That smiley looks like your pic!! How cool is that?????

twink

Hi Traci,

I can't seem to find the conversation either....(sigh)

That pic (at least, the one I most recently posted here) was taken a week ago, which would make it 3 months post chemo.  I had my last Taxotere on May 24th but my hair had already started to resprout while on Taxotere.  Now I'm on carboplatin which doesn't seem to be affecting my hair (I was told it might thin).  My hair has always grown 'fast' but, in this case, not fast enough for my taste, and curls....ahhh, it's so darn curly I don't quite know what to do with it.  My head feels like a brillo pad.

Traci-----TripNeg

3 months post chemo??????

WOO HOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Only two months to go to brillo pad!!!!!!!!!!!!! Yea!!!! I'll take brillo pad over 5:00 shadow anyday!!

: ) Traci

ps Does anybody have any advice about Milk Thistle or Hoodia for us Trip Negs??

playwriter

so, is biotin good or bad? a lot of people are taking biotin to get their hair to grow back.

was the kabosh on q10 only during chemo? cuz my onc said, on our 2nd post-chmo appt, take coQ10, and turmeric. he also said red wine and ketchup both have good stuff in them. i would go more for tomato paste rather than ketchup, as most ketchup has high fructose corn syrup.