Calling all TNs

eileenpg

Cocker= My RO told me to wear sun screen on my face.He said it was ok to keep my legs and arms exposed to the sun. Not for a long time. He said. We can take care of any skin condition you get on your legs and arms. Protect your face. He is pretty adamant about supplement and vitamins. I always go with a list of questions. It is kinda funny when he gets so upset. He makes me do home work and look up stuff on the internet. The only problem I have with him is he drinks 6 + gatoraids a day. Monday is Doctor Day.  My question is "Is all that Gatoraid good for you" I am going to google any side effect to gatoraid. Ha Ha and tell him tomorrow.

Cocker_Spaniel

Eileen your post made me laugh. Gatorade is an excellent fluid replacement if you are doing strenuous exercise like training or running a marathon but, it has a large amount of sodium and sugar in it which is not good for you.  I should imagine he is pretty wired up though with 6+ per day. It's really just an energy drink for those much needed moments which most of us won't need and it could increase your heart rate.   We had a locum once who used to look up things on the internet as opposed to learning it at med school and being able to fully inform his patients himself. None of the staff would go to him if they had a problem in case he looked it up so he didn't last long lol.   My daughter's friend used to take a lot of gatorade and she suffered with terrible headaches and nausea and vomiting when she tried to stop it. So that should tell us something about it.

I can't understand your RO saying it's ok to get the sun on your arms and legs but not your face.  NZ has one of the highest rates of skin cancer from the sun in the world and you can still get melanoma's on your legs and arms which can spread to the lymph nodes. Melanoma's have tentacles that spread out and burrow deeply in the skin and then can spread to your lymph nodes especially in the groin. You may not notice a mole on your legs changing.  Whereas a BCC (basal cell carcinoma) does not spread but still needs to be removed. You should slip, slap slop all over if you intend to go in the sun and regularly keep applying sun screen of at least 30+.  I would be interested to know if your findings on the internet match up to his lol.  

anotherNYCGirl

Thanks for responses re zometa. Glad it is working well for you! I dont know yet if dentist says ok for me. WIll see.

Lisa, - Your walk sounds cold but wonderful!!

eileenpg

Cocker= I looked up Gatoraid .Can you drink too much Yes, I am ready to tell him tomorrow. He is so dramatic when he answers me . I absolutley love him though. He was very concerned when I had so much fluid (edema) from third spacing. He gave me lots of great idea on how to reduce it without doing any more medications. Compression clothing and wrapping my entire arm(fingers included.) It did work. So far down 14 lbs. I will ask him further about Vit D tomorrow. By the way. I already bought him 2 six packs of Gatoraid as a thank you gift.

Going to ask him about Zometa too.

Cocker_Spaniel

Eileen expect him to be wired to the max . He will know  it can alter heart rhythm and cause palpitations or he could look it up on his comp .  You may get some sense out of him though lol.  Mind you coffee and even tea can do the same though tea not so much.  I also suffer with lymphoedema. It's a right pain. One arm is skinny and the other twice as big.  It's so hot here though and the thought of the sleeve to wear really puts me off.   Do you wrap your arm during the day or just at night.  

Tobycc

Thanks for sharing Inspired!!!! Love hope!

Cocker_Spaniel

Lisa another name for Zometa is Aclasta.  It is usually given here in NZ in IV form for loss of bone density (osteoporosis). It is to hopefully make the bones stronger.  My old fellow has it because he has had lots of accidents through his job in his life and has had many fractures to his spine.  He has osteoporosis .  The infusion is done at our surgery and takes about 25 mins.  He hasn't had any side effects whatsoever. Another drug for this is Fosamax but you have to stand erect are taking  this and before food for half an hour or it can effect the stomach.    

AlexaP

Hi everyone I am new to this forum. I actually didn't know about it until someone pointed it out to me...

Anyway, I will be 50 in a couple of weeks. You can see all my stats in my signature. I was diagnosed with IDC node negative (13 nodes removed, this was before they developed the SNB)and TN when I was 31 back in 1996. IT was your typical "where the heck did this lump come from" fast and furious in my armpit found by myself in the shower one sunny February morning,,, I called my dr IMMEDIATELY and he referred me to a surgeon... They did my mammogram, then ultrasound, then radiologist said she would stay late to do the biopsy that night. I just knew it was cancer... And I was right... I had a mastectomy then CMF chemo therapy and a TRAM reconstruction. Had follow ups with the oncologist until I hit 10 years then they told me I didn't need to see them anymore...

This past June I was in need of a new gynecologist, as my previous one had retired. I have a friend who has a practice (no I NEVER see him in the office) and he INSISTED that I have the BRCA testing because my cancer was at age 31. I did the test just to make him happy and was shocked when It came back positive... No family hx that I can find... So in November I had my other Breast mastectomied , as well as SNB and a BSO. I have a TE, getting ready for an implant in March... Pathology was all negative, but I did have a radial scar so it would have turned bad if I hadn't done the surgery... But that is completely unrelated to either the TN or the BRCA. Yay, another rarity. I'm a real gem. So anyway...

I just wanted to say hi and let y'all know that I'm a long term survivor of TN... And Look forward to getting to know you! Have a great day and East coasters be careful this weather could be a doozy

eileenpg

AlexaP= I LOVE YOU!!!!!!!!!!!!!!! Thanks for making my day and thanks for sharing.

Allydp

Kay and Eileen - what a beautiful photo and how awesome you two got to meet up!

Slv - I am sending you many prayers. You'll be in my thoughts.

Alexa - thank you for stopping by and sharing! I was dx at 33 and BRCA+ as well. Your story is an inspiration.

Regarding Zometa - my onc wouldn't put me on it and I'm post menopausal since I had a BSO/hyst. She also said no to Metformin. I'm seeing my PCP Thursday and asking her next.

A little update on me - I had my exchange surgery last Tuesday with some fat grafting and port removal. Exchange and fat grafting went well, but my port site got infected and I spent 3 days in the hospital on IV antibiotics. For added fun they found a superficial blood clot and hematoma at the site as well. Thankfully I'm home now and can finish up treatment with oral antibiotics. The clot and hematoma should remove on their own. But man, what a crazy week it's been. I'm looking forward to getting through this final recovery and focusing on better nutrition, exercise and getting my health back!

Lookingforward66

Hello all!

Just got back from my PCP with results from my last blood work.

Yea to my vit D3. (98). But too high on B12 (1914) not to be over 1100. So I stop the B12 tabs I was taking. They are excellent. At one time my B12 was below 200.

All other blood looks good except Glucose. Looks like I am prediabetic. Soo major shutdown in starches & sugar. No juices either. Whole fruit in moderation. My weight is between 130-135 for 5'8". But have small gut. More exercise. I still do my yoga, but need to do some walking. Have knee/hip problem that gives biking a no-no.

Can still get in a great walk. Temp in low 70's with nice breeze so...light sweater or jacket and off I go. Just love South Florida weather. My tinnitus seems to be getting louder. Anyone have that happen?

Luck and prayers to all in chemo & or undergoing tests. I say prayers nightly for all us TNBC gals. May we fight on with strength & determination.

Marsha

slv58

Allydp, thank you for your thoughts. I don't expect to find out results until after my ct scan, but I'm ok with waiting. I'm so sorry to hear of your surgery problems, I'm happy your at home now where you can rest in comfort. Do something nice for yourself and don't push yourself too much, rest is needed to heal.

Tobycc

Alexa, thanks for sharing!!!!!!! SLV keep us posted Prayers nightly for all in the group

VerukaNY

AlexaP- thank you soooo much for stopping in!!! Truly it helps so much to see someone living life so far on the other side of diagnosis!

AllyP- hoping you heal up quick!! I just had my exchange done on the 9th and am just so ready to hurry up and get on with the rest of my life- and to get back to exercising!

NYC is on lockdown- the kiddos have gone to bed dreaming of snow and Elsa and making snowmen...hope everyone is safe and warm tonight...and that I survive the next few days without getting cabin fever!!

AlexaP

Do you wanna build a snowman?

Or ride our bikes out in the hall.....

If I hear that song again I'll explode (and my "kids" are in their 20s lol)

I'm glad that Inspired told me about this group. I may be a many years survivor but see I have a lot to learn from you all... Goodnight and everyone stay safe

Meadow

Veruka the snow on the east coast is making the news all over the country, hope you are safe and warm.

Ally, sweet girl, so sorry to hear of your troubles and recent stay in the hospital. I am curious about the port problem...infection and blood clot...were you having any problems with the port prior to the surgery to remove it? I still have mine, but would like it out, but the Onc wants to leave it in a bit longer. Seems like the longer its in the easier problems could occur, I just dont like having a foreign item connected to a blood vessel i guess. How are you feeling now overall? better I hope.

AlexaP, welcome to this thread, and what an encouragement you are to us all! So glad you found this warm spot to land.

Looking, yes my tinnitus is worse, never thought about it being related to chemo, but maybe it is, hmmm. Your vitamins must work great for you, your levels are so high! glad you are able to modify your diet to help with the glucose.

take care everyone

simplelife4real

Ally, congrats on getting through the exchange surgery. I'm glad you are home now after spending an unexpected three days in the hospital.

Meadow, my husband takes lipoflavoids for tinnitus and swears by them.

Wishing everyone a great day!

breastcancerhusband

Hi everyone,

I hope all you lovely ladies are doing well. Great pics by the way!

I just wanted to share something with you all. Obviously everyone knows the tag that TNBC gets - its the deadly one, aggressive blah blah blah. Well........a recently published study actually showed that in one cohort of 782 patients, survival rates for stage 1 and 2 TNBC were the same as for the ER/PR+ types. Chatting to collegues at work the consensus seems be that the advances in diagnosis, better drug preperations, quicker times to treatments, better drug regiems and life-style interventions are all helping!

Obviously I don't advocate getting hung up on stats etc. Just like my darling wife you are all individuals not stats, but i just wanted to highlight that the battle is being fought and is being won. A long way to go, but its going in the right direction!

Love, hugs and prayer to all from London UK!

InspiredbyDolce

Hi Alexa,

Thanks for dropping in to say hello, and for your background. I've been meaning to ask you, what is a radial scar?

InspiredbyDolce

Oh Ally! So sorry to hear what happened, I bet it was nice to get home and enjoy your own bed again. You keep making progress, I know this infection won't keep you tied down.

AlexaP

A radial scar is a star-shaped breast mass that may be completely benign, or it may be precancerous or contain a mixture of tissue, including hyperplasia, atypia, or cancer. If a radial scar is rather large, it may appear on a regular screening mammogram. It can look like an irregularly shaped star, having spiked arms radiating away from the center. A radial scar in breast tissue usually won't cause a lump that you can feel, nor will it make breast skin dimple or discolor. In some cases, a radial scar may cause some breast pain.

Radial scars can look like breast cancer on a mammogram, but they are not cancer. They are found most often during biopsy on a breast tumor removed for other reasons. After they are removed, they need no further treatment...

They are RARE. An estimated 0.04%, or six out of every 15,000 patients are diagnosed annually with a radial scar of the breast. Women between the ages of 41 and 60 are at the highest risk for a radial scar. These breast lesions are even less common in women under 40 or over 60 years old.

radial scar is not always made of scar tissue, but it takes its name from its scar-like appearance on an x-ray. A radial scar may be caused by breast surgery, or breast inflammation or hormonal changes. It may also be the byproduct of fibrocystic changesin the breast that normally occur as you age.

Some studies have found radial scars increase the risk of breast cancer, while other studies have not.

(My source material is from Komen and breast cancer.about.com)

My radial scar was completely benign. I did have a Breast lift 4 years ago so that may have been the cause but we will never know for sure. The dr told me no chemo or rads were needed and I am NED

simplelife4real

Eileenpg and I just met another triple negative survivor (username Maryfox) today for lunch. Mary was in treatment from Sept 2013 through spring 2014 and has posted on this thread in the past. We got together for lunch in Vero Beach, Florida....and of course we had to take a picture! Here's what three triple negatives look like....Eileen (left) Kay (center) Mary (right). We had a great time!

MaryFox

They say that two negatives don't make a positive, but these three negatives are certainly positive. It was great to get to know Eileen and Kay. Great folks.

Tobycc

GREAT pic!!! And to see hair again, YAY !

slv58

Ladies, you all look so strong and beautiful! Love the smiles!! Thanks for sharing the pics, love to see our positive TN sisters :-)

Meadow

Thanks Kay, looking into lipoflavoids right now!

Zenful

Lisa, your mindfulness walk warms my heart. Namaste!

Zenful

Lisa, your mindfulness walk warms my heart. Namaste!

ALHusband

Breastcancerhusband, thanks for that post. It's great to see another husband in this forum! We need our own forum where we can burp and scratch ourselves and do all sorts of disgusting, crass male things without fear of reprisal! LOL!

Luvmydobies

Hey ALHusband, contrary to popular belief, we women also burp and scratch sometimes, and... wait for it.........................................we FART too!!! They may not be as loud as yours but we are human and it happens. Now we don't particularly scratch where you men do, but if any lady says they don't ever itch in weird places, fart or burp, they're flat out lying!! Hahahahahaha! God bless my hubby is all I can say!