Calling all TNs

jenjenl

Recon stage 1 went well. Home recovering.  Xo

Curlylocks

Jenjen - Wow, you are home on day 3?  Rest and let others pamper you!

Michele

adagio

I went for my 3 month check up with my oncologist - she basically felt all the lymph node areas - neck, armpits, shoulder, then thoroughly checked both breasts for lumps and bumps - all is good! My MO doesn't do testing of any kind so it is kind of odd, but I trust her - she is the expert after all.  She told me to keep doing what I am doing. The main things I am doing to keep cancer at bay are exercise (45 mins brisk walk each and every day), eat a good diet with zero processed foods, take vitamin D (5000 units daily), avoid stress, acupuncture biweekly, massage monthly. I also take medicinal mushrooms and turmeric. 

Best of luck to all those recovering from surgery and still going through chemo - there is a life after it all!

JAN69

Adagio Woo Hoo!  Love those happy 3 month check ups with clear results.  J

DorMac

I had my surgery 2 years ago, followed by chemo (no rads) - just had my 6 month follow-up and everything is fine. Received the booking sheet for the next follow-up with my onc - ONE YEAR away. I was really surprised that the follow-up appts. jumped to one year so quickly. Not too worried though as I will have an MRI each year in July and I figure that's the best way to find out if anything is going on.

Best wishes to everyone on here who is still dealing with treatments and their nasty side effects.

Doreen

JAN69

DorMac  WooHoo to you too!  Happy dancing all over the place.  Congratulations.  J

Cocker_Spaniel

Wow thread is picking up again. Welcome to all newbies, glad you found us.

Titan - Yep I too would like to feel happy and goofy again.  It helped me enormously on here to get through my treatment with all of our laughter.

Tekriter - you have such a happy and kind face on your avatar.  Wish we could get bigger pictures so I could see everyone better.

AL Husband - great news on your wife completing chemo.  Nowhere else but onwards and upwards from here on. Your wonderful wife has had so much to deal with that she deserves much better things from now on.    

Gillyone - I went back on some posts to checks out some spots that Inmate had and noticed you spent some time on holiday in NZ. Can you tell me where you visited and what you thought of our little country.

Inspired - your name says it all. All of your posts are so inspiring and informative and so helpful to us all.   

SlowLoris - great news that you are doing ok and hope it gets even better.

BanR - you are right we do seem to adjust to almost everything that is thrown at us. That's because (we are women!!). Just joking.  

Linda - can only go so long without hearing from you.  You are an inspiration to me with your courage and wonderful loving posts after all you have gone through and always will.  I think of you every single day. You make everything feel right again.

Curlylocks - I agree cancer sux big time but we do get through it.

LP Boston - venting, raving, crying, swearing is all allowed when you need to do it and we do understand. We have all done this and probably still will.   I too had an allergic reaction to Taxol (A member of the Taxotere group) but they gave me some diazepam and tried again and all went well.

alv58  lot of  girls tried metformin. My HbA1c is normal so I don't really want to interfere with that but someone will come on and advise you on how it went.

Jan69 - I would  love to retire to the woods with a recliner and a good book.  If that was happening then motivation could sod off.

PeggySull - so glad you have found your new normal. My new normal would be with Jan in the woods. What a great life she has but unfortunately work calls for me every day.

Kathrynn - yep that bad penny has popped up again! but so glad to hear from you my friend. You make my heart feel good. Glad Mom is still doing well you must be taking very good care of her. Yep get a new doc girl that will explore every avenue for you, you sure as hell deserve it.  How is that hole in in your roof with the tree sticking out of it.

Debwarrior, - Adagio nd DorMac glad things are going well for you all.  

My god this is so long I'm running out of room. My spots turned out to be lymphoid tissue whatever that is but no cancer.

Have a great day ladies.    

 

Cocker_Spaniel

One other thing - Chloe.  I really (thought) she was growing up at last. Hasn't been chewing so much lately. We have some beautiful fruit trees in our garden.  Apples, plums, apricots,  cherries, you name it and its  there. All the plums are looking great and almost ready for picking but everyday a ripe one will fall to the ground.  She gets it every time and runs around the garden chucking it up in the air before I can get to it. She must think God is sending her down a ball each day to play with. By the time  she's finished with it nobody wants to even think about eating it. Just gotta love her.  

InspiredbyDolce

Oh Doreen, that's excellent news!  Wow, that has got to feel amazing!!!!  It's like nothing has ever happened and you are truly back to being just another normal member of society before bc.  Excellent job Doreen - so proud of you!! If I was released for 1 year I don't think I would even be on here ... I would see that as a signal to get up and get out and resume a life without a lot of bc mention. You need to go celebrate big! Big smile for you. 

Adagio - Congrats to you too on your excellent appointment!   No processed foods?!  Wow!  What do you eat for snacks?  Tell me more about these medicinal mushrooms.  Are they the kind you eat or take as supplements?  What type of mushroom?  Are you eating then only fruits, vegetables and meat and fish? No bread, etc.  If Fooducate grades things with an A or B+ I'm pretty much okay with it - depending on what it is. But seeing as how you have been able to give it all up 100%, maybe I could do better even and follow your example.    I gave up Diet Coke and Coffee two years ago, so processed foods shouldn't be any harder.  I had really really really loved my coffee and diet coke. My processed foods are:  Ezekel bread, Kashi non-GMO cereal, organic corn tortillas, 77% dark cocoa bar and Trader Joe animal crackers (organic) and mini rye krisp bread.  I can't imagine parting ways with the animal crackers. 

Well, I'm glad I read your post before dinner.  You've motivated me to just steam a bunch of veggies tonight without the corn tortilla. 

Oh - news flash - I read an article today that said olive oil should never be heated - that it's chemical properties change.  That we should use organic grape seed oil.  They mentioned organic because non-organic producers may use Hexane to release the oil from the grapes. 

Here is the article of 17 toxic foods, preservatives to avoid:   http://www.seattleorganicrestaurants.com/vegan-whole-food/cancer-junk-food-carcinogen.php

JAN69

Annie - Come on over.  We'll read, sip tea, nap, tip toe thru the woods, and I'll teach you how to quilt, if you don't know how already.  Yes, it's a good life except I get lonely.  So let me know, and I'll meet you at the airport.  Cloe could chase the squirrels.  No fruit trees, just a couple of nutty people.  Jan

JAN69

Oops, Annie, forgot your WooHoo.  So glad you got good news, too.  Let's keep it up.  J

LRM216

Cocker_Spaniel:

So sweet of you to think of me.  I read almost every night, but only post when I think there is something of value to add or suggest.  I was so very happy to read your post and to find out that your test results were good.  A great relief to me, and to you, I'm sure!  I'm doing well, just really busy with work, my furry kids, and, of course, Bryanna, away at college.  She's doing great and I am so proud of her.  House is too quiet without her!  She's only about an hour and half away, so she does come home for a weekend (seems to be when she needs something or more money, lol!), here and there, but I love seeing her, so I just pretend it's just to see me!  Be well, dear friend and know that you are in my heart and thoughts always.

To all my other dear sisters on this thread, especially those going through more treatment, and the newbies that are just beginning their journeys,  I pray that all  of you will see wonderful outcomes from your treatments,  and that, love, strength and fortitude continue to bolster you as you fight this beast. To those of us with treatments behind us, may we continue to be blessed.

Hugs,

Linda

Debwarrior

Hi folks,

Thanks for the kind words InspiredbyDolce.  I don't think that I have done anything all that special.  I have tried to eat a good diet, mostly organic, but could be better on the exercise front and I'm trying harder now.  I haven't taken anything in the intervening years, but now I take Vitamn D, 5000, turmeric supplement and green tea supplement, like many others here. My D is on the low side, still after months of supplements.  Anyhow,  I'm glad that I can help inspire others with the length of time that I have been ok.  And even now, my new primary was pretty small, but you all know how it is with triple negative. Treat it with everything they have.  I was having annual breast MRIs and that's how they found it.  I have to say that after so many years of clear mammograms, and clear MRIs, it was a big shock. I understand Curlylocks how you would be pissed after all these years.  I thought I was done.  I feel lucky though that it's treatable as most of them are.  It's nice to be here with other TN's because we seem to be a special subset of those with BC.  I'm thinking of the others here and wishing you all well.  I'll try to check in a little more often

Deb

InspiredbyDolce

Cocker - I just now saw your post!  Oh that is such wonderful news - so elated for you! You go celebrate now, too okay?  I wish I could have a piece of chocolate and celebrate with you, but trying to right the ship over here.  LOL 

adagio

Inspired - please let me clarify that what I meant by non-processed foods is by not using anything that is packaged and is far removed from its natural state. Of course I would eat a corn tortilla if the corn was gmo free and organic - likewise with bread - If it is a super healthy choice - but generally I do stay away from bread. I tend to eat brown rice a lot (organic). It is very challenging, as you know, to cut out a lot of stuff. And I do eat organic  85%dark chocolate. So perhaps I should not have stated that I eat zero processed foods, but rather that I limit my processed foods!!! I am human and love snacks and treats like the rest of us. If I didn't have the daily piece of chocolate, I would feel deprived, and that is not a good thing for me. I also do drink organic red wine! And coffee! So sorry for the misunderstanding!

BanR

hi all..

finished taxol 2 yesterday. 2 more taxols to go and hopefully this chemo drill should end feb 20th.

was having folic acid one tablet a day as prescribed by my general physician since past 1 month for low rbc. talked to my oncologist and he said i could try but it wouldnt help much.

what i read just now that taking folic acid too much ( what is too much? ) could actually help cancer. folic acid helps dna and rna, in cells, which is present in normal cells and cancer cells too.

i was wondering, that whatever good and healthy we are eating through our treatment, is helping our normal cells and also the cancer cells too ( and we want them to die!! )

InspiredbyDolce

BanR- my Onc and I have had a lot of talks too about rbc - I brought it up when I noticed it fell right below normal.  He said that chemo will suppress the rbc, and even one year later when my PCP asked me to let my Onc know it was a bit low, I took the report to my Onc (who has a PhD in Hematology) and he said nothing to worry about!  He said several things, but what applied to me was that I don't eat red meat and I was doing heavy workouts (14 miles daily) and this was keeping the cells so new (sorry, layman's terms).  He said there was not much I could do, there are things that support a healthy rbc,so I have included the link. I also talked to many women on here and some are 10 and 15 years later with a low rbc or wbc - it's just part of their new normal.

During chemo though, my Onc was very adamant about 3 things:  no supplements, no juicing, no extra help, such as blueberries, etc - if I wasn't already doing it as part of my normal routine he did not want me adding in anything - he said this was because he did not want anything to 'mask the cells' that chemo needed to target.  So when I told him I had bought blueberries and was going to start taking them, he jumped up out of his chair and told me to not assist in any way, it could interfere with the chemo.

Folic acid is B9 - and the body does not store folic acid, which may be why your PCP prescribed the daily dose.  When I researched it, B9 helped rapid cell division and since TNBC is usually a rapidly dividing cancer, I did question if I should take a standalone supplement because many of them were megadoses.  I instead decided to take a B-complex vitamin, where the levels are much lower.

As long as we are talking vitamins, Vitamin A is something that has also been implicated in increased risk for bc when derived from sources other than beta carotene.  I believe (going from memory) it was suggested of not more than 2500 i.u. of Vitamin A to be from non-beta carotene.  If a supplement of Vitamin A is 5,000 i.u. and only 25% is from beta carotene, than this would be over what was suggested. However if that same supplement was 50% from beta carotene than this would be within the suggestion.  As for myself, I take Garden of Life Raw Whole Food Vitamins - they are capsules, but I open the capsule and drop the powder into my kale drink.

Vitamin A aids in red blood cell production. Maybe you only need to take a great multivitamin, and one where Vitamin A is from beta carotene. 

Red blood cell production

Red blood cells, like all blood cells, are derived from precursor cells called stem cells. Stem cells are dependent on retinoids for normal differentiation into red blood cells. Additionally, vitamin A appears to facilitate the mobilization of iron from storage sites to the developing red blood cell for incorporation into hemoglobin, the oxygen carrier in red blood cells (2, 7).

The link below is a List of Foods that are Natural Sources of Folic Acid.

http://www.medicalnewstoday.com/articles/219853.php

InspiredbyDolce

Oh Adagio, thanks for posting.  LOL  Okay, I think I'm legal again and following the same principles as you. Whew, it was going to make for a very unpleasant day today trying to cut out even more things.    So last night I did only have steamed broccoli and carrots and my kale smoothie. I thought about you the whole time!  Whole Foods has this red kale in - oh it's so pretty and I've started buying it in a bunch vs bagged - it is organic.  We have found that Trader Joe's has excellent prices on organic, and for the same or lower than grocery store non-organic pricing.  I think Whole Foods is expensive - but the bunch of kale is $2.99, and it will last me 3 days - so I think that's reasonable enough.

Where do you find 85% dark chocolate?  The highest I have found is Trader Joe's organic 77% dark cocoa - I have not been able to find a higher source!

simplelife4real

Happy Friday morning!

Today is the  first day I've had without motion-induced nausea since starting AC two months ago.  Whoo Hoo!  I can finally walk more than a few steps at a snail's pace.   I'm excited about getting back to walking to build up my strength and stamina before my surgery on Feb. 13.  Today, it's bitter cold outside, so I'm going to work out indoors on the elliptical.  At least it's a start!

Ban...here's an article on folic acid.  Based on the article  it looks like it can be preventative if there is no cancer present, but there is some evidence to suggest that high amounts of folic acid might possibly help an existing cancer.  

LPBoston

Hi adagio,

My oncologist won't do any scans either which I find very strange from reading how everyone else gets them.  I am in Boston and have the best care with the best doctors.  Just puzzling.

Hang in there!

LPBoston

Curlylocks

LP Boston - normally here in Canada if your cancer is invasive they will do baseline scans prior to the start of treatment.  No other scans are done in the future unless you have symptoms which to me is crazy because if you can catch something when it is smaller, doesnt it make more sense to treat it before it gets a chance to do something crazy!  Its all about the almighty dollar no matter which way you look at it!

I called the genetics clinic at Credit
Valley Hospital to update them that I have been diagnosed with a new
Primary bc. They had said back in November 2013 when I went for
genetics counselling and my older sister went for the results of her
testing that I was not eligible due to their criteria. Three immediate
family members having bc and not been tested. As there was only myself
and an aunt left to be tested they said I had to wait until another
family member was diagnosed. These rules are absolutely crazy given my
strong family history. Anyways....they now say that I can get the
testing due to this new breast cancer diagnosis. She still said that
the chances of me having the mutation were slim as my other two sisters
didnt have it. I, however, belong to two separate private Facebook
groups...one is for DIEP flap and the other one is prophylactic masectomies, I posed the question on there asking if others have had
immediate family members test negative and then some come back
positive. Bingo....several said they had a few sisters test negative, a
brother positive and then themselves positive....so I know now that the
genetist is not entirely correct in her thinking.

I told her I
wanted the test done, she is writing up the requisition and I will head
down to the hospital to get bloodwork done at my convenience, no appt
necessary. It will take 2 months from test date to get results back.

I
always found out that Triple Negative breast cancer is often associated
with having the BRCA1 gene. I mentioned this to her and she said
usually only in women under 40. I dont think I am "the usual case
scenario". The chances of being diagnosed with bc under age 45 is 25% -
I got it, chances of being diagnosed with Triple Negative Breast Cancer
are 15-20% - I got it. Its especially strange since my first breast
cancer was estrogen positive. I dont think breast cancer has any rhyme
or reason or plays by the "normal rules".

Michele

adagio

inspire - the chocolate I buy is called "Green and Black's" - it is fair trade organic and tastes very good. Unfortunately we don't have Trader Joes here in Vancouver, but Whole Foods is where I do the majority of my grocery shopping and the Farmer's Market which sells all locally grown produce, but of course at this time of the year we are limited to the hearty veggies like kale, carrots, beets, squashes etc. I am not a big fan of depriving myself from eating food that brings me pleasure, and I am fortunate that most of what I like happens to be not too too bad for me - I guess my worst loves are the coffee, wine and chocolate. Now you have inspired me to try and eat only steamed veggies for a meal - I think I would get hungry with no carbs. I do eat meat once a week and I eat fish about twice a week, but mostly I prefer vegetarian meals.

ALHusband

Inspired my wife has 85% dark chocolate. It's Lindt brand which is a pretty readily available brand. We got it right at the local supermarket (Publix). I don't however, think it's organic.

InspiredbyDolce

Regarding the concern of scans - I know a lot of TNBC ladies on the forums throughout bc.org who don't have scans.  I believe the medical teams for each of us use our own variables to determine how they want to evaluate and monitor us - variables can really change this from what we look like at a glace to one another, to where someone might have an additional risk, such as where someone might be dx'd at age 25 - their team might feel theirs might act particularly aggressively or if there was suspicious nodes or family history, etc - and therefore they might have a scan. Node involvement, location of tumor, labs, medical history, final pathology report, was ther evidence of lymphatic invasion, and so many other things can influence the decision a doctor makes to request or not request a scan.  The NCCN guidelines is a good reference point in the U.S. to see what is recommended. Even the reporting the diagnosis option here at bc.org leaves a lot to be interpreted. For instance, the selection of the option for tumor size.  It publicly displays at 1cm on a profile, but in the drop down criteria box for selecting it, the range is actually 1.0cm to 1.9cm.  That's a big variable.  So many of us might look the same with a 1cm option selected, but in reality, some of us might be at 1.9 and some at 1.0 - but we don't see that specific difference listed because the option defaults to 1.0 when you select it - and this range represents almost a complete doubling in size. I just don't want anyone to have to worry if they didn't get a scan - your medical team must be confident with all the information they have regarding your particular case. Remember, they want all the facts on you - and if they felt a reason to not do a scan I'm sure they were following the information and if the information led them to not request a scan.  However, if you do find yourself worrying then I do think it is very reasonable to discuss this with your team and request a scan.  

InspiredbyDolce

Regarding Dark Chocolate - Thank you dark chocolate aficionados, and Adagio and AlHusband!  I researched all suggestions and found the highest organic one to be the one Adagio mentioned "Green and Black" at 85%.  It says my local WalMart has it in stock!  I'm going there today to purchase it!  Yippee - can't wait.  LOL

ALHusband

One result of my wife trying to follow a low glycemic diet is that I've lost about 23 pounds following it with her! Now, mind you, losing 23 pounds from my rotund, porky physique is like tossing a deck chair off of the Titanic...but...you gotta start somewhere!

InspiredbyDolce

We found Black Angus has $8.50 lunch specials Monday through Saturday, and salmon is on the menu - and it's wild caught too!  When we go there they will poach the salmon for me, so no oil or butter.  I sometimes get it with the salad and baked brussel sprouts.  I do always have on hand the wild caught sockeye salmon from Whole Foods.  It is $10 for a pack of 2 and each is a great sized portion!

ALHusband

OK here's a weird one. My wife had a tiny spot under her nose which the Oncologist suspected was a squamous cell or basal cell carcinoma. He refers her to a Dermatologist. Dermatologist takes a biopsy. She gets a call week or so later while at Chemo for her BC. It's the Dermatologist's office calling with the lab results. The biopsy came back positive for squamous cell carcinoma in situ. Dermatologist says he wants to surgically remove it. However, PS is doing mastectomy and reconstruction anyway, so he suggests that he just take it off while she's under for her exchange surgery. He takes it off last Friday when he does her exchange surgery. He sends what he removed to the same pathology lab as the biopsy. It comes back negative for cancer. Huh? It was cancer and then it wasn't? Only thing I can think of is the chemo for the BC killed that too? But if that were the case...why was the spot still there? So, Ive decided that I'm going to think positive and apply the pathology report for the skin cancer to the BC. Whatta ya say we just call it a day and say THERE'S NO CANCER OF ANY KIND ANYWHERE? That's it...I've declared it...for everyone in this forum...last one out shut off the lights!

LanaM

That sounds like a great idea AlHusband! Your wife is very lucky to have you by her side through all of this cr__! I had 28/33 rad today - last of my full rads - only 5 boosts left - or as my RO says the "bonus rounds". I had a small meltdown this morning. I've worked through all of my treatments and I think I've been pretty strong. My underarm is so sore from rads & I haven't been sleeping good. Everyone was so nice though - they gave me a few things to try & I realize I need to keep taking ibuprofen and pain meds regularly to get through the rest of rads - thought I should just tough it out! I stayed home from work today and just rested. I have my work Xmas party tomorrow night & I'm hoping to go and have a few beers and relax! Thinking of all my fellow BC warriors, especially us TN survivors! TGIF

Cocker_Spaniel

Curlylocks - here in New Zealand apart from at the commencement of treatment we only get further scans if there are symptoms that last 10 days.  When I asked my BS about this he said it is easier to treat a larger cancer than it is a smaller one. Go figure.

I also did genetic testing because my mother had ovarian cancer and my grandmother (mum's mum) had left breast cancer the same as me.  My results came back as inconclusive!!.  MY BS said request that it be done again but I'm not sure I want the anxiety of waiting for results.  Will have to think more on that one.

In relation to chocolate I have never been a big chocolate, biscuit or cake eater and I still got cancer.  Now I eat it if I feel like it and enjoy it. lol  

AL Husband  that is a very odd scenario with your wife's spot.  I can only think that perhaps they didn't take enough at biopsy to get a true  result.  I would request that they retest the whole specimen (you have the right to request this) and then you will get true results. I am so glad it's gone though because we all know what SCC's can do.

Linda you paid your beloved daughter the greatest compliment by continuing the special care of her beloved wee girl.  I'm sure Bryanna also comes to you (apart from money which they all seem to come home for or decent food) but also  to fill her heart of her much loved gran to sustain her through her studies.  I know you think of your daughter every day ,as I would if it were one of mine,  and I know your empty arms ache for her but she has left you with the greatest gift she had to give, Bryanna.  I hope one day you can post a picture of this gorgeous young lady.  You are awesome and always in my heart.

Have a good day ladies.