Calling all TNs

Coopdizzle

Ok. I just got back from a little get away with my hubby to San Antonio. I go in on Wed. to get my port and I'm hoping I can start chemo soon. Like this week. As much as I don't want this to be happening, it's going to. The doc said I will have to do rad at the end like you said, you just have to do whatever you can to live. Getting this is so scary that I just might PTSD! lol

BanR

tumor: i like that long name girl!!

coop: i know how it feels when we get a diagnosis of TNBC, in fact all of us here have gone through those initial few shocking days. Do let us know which drug your onc decided to include in..you mentioned that it is a new drug.

simple: i had a mole, dark brownish in color which fell off after my 3 rd AC. It started to grow again from Taxol and now it has stopped and not the color is different too. Showed it to my onco. He just said that we have to keep a watch on that mole but the mole is on the hand and chances of a secondary cancer are very rare there.

Now I got a new issue. I finished 16 radiations and since the past one week or more I have a funny pain on the ring finger of the left hand and also on the knuckles of the right. It began with cramps and leg pain at night time and now that has subsided and now fingers feel tired and painful. Tomorrow i am going to the onc for this... is it becos of rads or something else is coming up.

Titan

Banr....just guessing but i betcha your pains are after effects of taxol...I remember having some trouble typing on the computer.....and also the leg pain if I sat too long...this lasted 3-4 months after taxol was done...I had a toe nail fall off too...which was weird but took it in stride....nothing like losing the hair..lol....that toe nail was ugly anyway...

BanR

I hope so Titan that all these odd pains which are coming up is because of Taxol. I never had these while taxol chemo was on. It started some 2 weeks after taxol. I remember you mentioning that rads will cause "good fatigue"..yes, it does cause that kind!  

Cocker_Spaniel

BanR I had pains in my legs from Taxol as well.  Found it hard to get up from a chair or kneeling position and still do some days but pains have gone now just a bit of weakness. Also have numbness in my left ring and little finger. Didn't have it with chemo just the Taxol.  Still having eye and nose issues as well.  I think Titan is right and it's from Taxol.  Happy to say at least the leg pains have gone although still have the other issues.   Hopefully it will go for you soon too.       

BanR

Hopefully cocker-spaniel!! Thanks for replying..

simplelife4real

BanR, did you have 16 rad treatments total, or are you part way through rads right now?  I go this morning for my verification session for rads.  I'm guessing I'll be starting actual rads sometime this week.  I didn't have any bone or joint pain either while on taxol, but my ring finger on my left hand was hurting a few days ago.  This isn't normal for me.  I just backed off on typing so much.  It's possible that it is a leftover from taxol.

BanR

simple : i have a total of 33 rads, 28 whole breast and 5 on the tumor area. Even I didn't have bone or joint pain during taxol either ( but loads of burning and itching) and this joint n bone pain started 3 weeks post the last taxol when the neuropathy and itching had started to subside. Will talk to my onc tomorrow regarding this.

Stupidboob

http://www.lbbc.org/About-LBBC/LBBC-Newsletter-and-Publication-Archive/National-Newsletter/Insights-on-Metastatic-Breast-Cancer-Spring-2014/Living-With-Triple-Negative-Metastatic-Breast-Cancer

http://www.ajc.com/news/news/health-med-fit-science/cancer-breakthrough-may-kill-all-tumors/nfNjt/

Stupidboob

Hey Gang,
  I don't post much, mainly because I just can't keep up.   I am not the most positive person and don't want to bring anyone down.  However, I did want to offer up a shoulder if any of you want to talk off the boards, via private message or phone just let me know.   Sometimes, as well all know we need someone that is not in our circle. 

I have been having some A-fib episodes again and am back on the heart monitor.  CAN NOT do what is right as far as eating goes, was going to have the endoscopy and colonoscopy done and that got all messed up, so it is scheduled for later.  Having a lot of tummy issues.   I don't have to tell you all the mental aspect of all of this and most days I have control over it just being thankful I am here, but some days I just can't get it under control and think why the hell am I even trying.....:(   Those days I hate.  

My Thyroid is messed up again so we have upped my medicine and I am hoping it is has something to do with the heart issues and it will straighten out. 

WHY AM I HAVING SUCH A HARD TIME WITH THE EATING AND EXERCISING!!!    I just can't seem to do it.  I have to do lite exercises because of my back. 

My anxiety is horrible again...........:(

adagio

stupid noob - sorry you are going through a tough time - it must be really difficult for you - thoughts and prayers are with you that things will get sorted out.  I sometimes have a hard time with eating and exercising - we all do - do the best you can and remember that a small amount of exercise is better than no exercise at all. Likewise with food - a smaller portion of food is better than a larger portion of food. Hang in there!

Curlyq1974

StupidBoob, Give it time.  You've been thru a a lot lately. One day at a time.  Hopefully the weather is changing where you are and you can take a stroll thru the sunshine.  Then the next day a little longer.  Don't be to hard on yourself.  You have a lot going on.  In my thoughts and prayers!

LovieLovie

Stupidboob - Thank you for the links and for caring enough for us to share that!  You are truly a special person. 

I am sorry you are experiencing such troubles.  It is hard to try to keep ahead of SO many things.  I don't know if this helps  but I had my 'go to' food items that were always stocked, good for me, easy to fix and didn't require brain power so I could concentrate on other things.  I know this is narrow but I always had nutrigrain bars and healthy choice chicken & spinach alfredo (high in protein).  I hadn't had the hc meal before so I didn't have any preconceived idea of how it should taste so it tasted normal to me during chemo. 

I am praying for relief for you.  Be kind to yourself.  This is a marathon not a sprint. 

InspiredbyDolce

StupidBoob - I hope you feel better soon  Try to break your goals down into smaller more attainable goals.  If your goal is to eat better and exercise, worry about only one of those right now and then work up to the other one. Building upon success, will help drive you forward to meeting the other goal. Also, don't aim for perfect on either.  Aiming for a perfect day of eating is hard to do.  Instead start slowly.  Start with adding one cancer-fighting item to each meal.  That means at the end of the day, you've had 3 servings of something that helps to fight cancer. Or if you have one bad meal that day, try to make the other 2 meals that day healthier and then build upon that.

For eating right, try like LovieLovie (love the name) said, to have some accessible items ready, that don't require a lot of work each time.  Do you like raw veggies?  I make up a large serving platter on Sunday night, with all types of vegetables.  Then about on Thursday I have to replenish it a bit.  But when I feel hungry, I go for that. They are already cleaned, prepped and easy for me. Some things that are easy to get on the platter fast are baby carrots - already pealed and small tomatoes.  As Lovie does, I also have a snack bar - this is just something I've been doing recently. I buy the Nature Valley Oats n' Honey Granola Bar - it's rated a B on Fooducate.  Not the best, but certainly acceptable in moments of weakness.  Another thing to have on hand is soup base.  I buy an organic stock at Trader Joes (Low-sodium Tomato or Veggie), and then I just have to drop a bag of organic frozen vegetables in it.  This bag is only $1.99 at Trader Joes and is one pound of veggies! Throw in some turmeric, salt and pepper and it's a good fast item.  Another one is an almond butter sandwich.  Oroweat 100% whole wheat (rated an A on Fooducate) - and a good rated almond butter - Maranatha is what I use because they state their products are virtually aflatoxin free - they are very particular about their storage of all nuts, and almond butter is much less susceptible to aflatoxins. 

FierceBluebird

Stupidboob, you can count me in on the anxiety party!  I'm really having it rough lately. But thanks for the links, looks promising.

And thanks for the recipes Inspired. I love Trader Joes tomato soup, so adding the veggies is a great idea.

I put on 19 lbs in three weeks due to steroids. Unbelievable.  

My doctor yesterday was a bit discouraging, (without intending to be I'm sure) but really need to keep focused on staying positive. 

youcancallmeang

Hi I'm new, also at Triple Negative, diagnosed at 47 Dec 17th 2013 full left mastectomy & 14 nodes removed on Jan 2nd 2014, started dense dose chemo as well on Feb 24th, every two weeks, this Friday my final of round one then on to 12 weeks of taxol? sorry very foggy brained, and not at home to verify.

simplelife4real

youcancall, welcome!  There are several of us still going through initial treatment.   Was your first chemo AC?  That's the hardest part for most people (including me).  I found taxol to be much easier...specially getting it weekly like you are.  You can do this.

Stupidboob, my go-to food that I think is pretty healthy but yummy at the same time is organic peanutbutter on either organic multigrain bread or celery.  Peanut butter on celery has been on of my favorite things to eat since childhood.  It sounds like you are having all kinds of digestive issues so that may not work for you.  I don't know.  It's more than okay to be negative and vent.  I appreciate your honesty.  If we can't write about how we really feel, good or bad,  there is something wrong with the atmosphere we are creating here.  I hope all of us always feel safe enough here to write about whatever it is we need to write about.    Honestly, I have often wondered if I would even want to try fighting if my cancer comes back as stage IV.  At this point, I have no idea what I would do if I am faced with that.  I just tell myself that I'll cross that bridge when, and if, I come to it.  I'm still in my initial treatment.

Speaking of treatment.....I had my first rads session today!  One down....32 to go.  I do like how quick each session is.  I am just keeping my fingers crossed that I don't have many skin issues etc.  I know the first few weeks are usually pretty non-eventful.  

LovieLovie

youcancallmeang-  You've been through a lot in a short amount of time.  I know how good it must feels to be completing a chemo series.  You will probably notice your hair start to grow back in during taxol.  Something to look forward to. 

Sorry you are making this journey.  You will get a lot of support here from some awesome people.  Don't worry about being foggy with us. 

Stupidboob

Thanks gang for all the support and suggestions.   One thing that I have been changing is I have been eating Belvita breakfast biscuits (like cookies and granola) but healthier.   I have eaten some grapefruit and been trying to get in more water.  I was doing really good when I made the fruit water like the radiation center did but I got lazy on that after about 4 gallons.  Lily (our puppy) keeps me busy, so it is not like all I do is sit, but not getting much exercise in.  I did plant a few seeds for cucumbers and peppers to plant and hope they take off good.  It was 82 here today but still getting cool at night, but as soon as it warms up and if CANCER stays away from me this year I will get to get in the pool.  Last year all I could do was walk around in it due to going through chemo and mainly radiation.  I am hoping that Lily will want to swim with me.  I just have to learn to practice what I preach.....:)  I tell a friend of mine if all you can do is 5 minutes then do 5 minutes, but then I feel like if that is all I can do why bother...just get down on myself.  With dealing with Agoraphobia it makes it hard to get out of the house and so I can't really make friends and I think that is another thing lacking in my life.   I have online friends and phone friends all of which I APPRECIATE and CHERISH but have no "in person friends"  and it used to not bother me so much, but now it does.  I think it is because I have a very small family and most are gone now.   Just feel real alone, and please don't take this wrong as I am not talking about you all.........but I am the type of person that likes the idea of people, but honestly I don't like to many of them.  People don't keep their word and everyone is out just for themselves and I feel I have let it rub me wrong and also rub off a little on myself and I HATE that.  I don't know why I keep getting to deal with people who never keep their words.  Some are major things and some are just things and I have tried to let it go, but deep down it bothers me.  I am the type of person that if I say I will do something I do it............all we have in life is our word and it needs to mean something.  Losing my dad this year has left me feeling orphaned and yes I am in my 40's but I still feel like I am all alone and I  have a real hard time dealing with that......and here is the kicker......dad was not there for me much, but I think it is just the idea that now neither of my parents can ever be there for me again.  I am a bit depressed but you can't say that or they want you to take a ton of medicine.  I am sick of medicine.  I love my hubby and I am so thankful for him, but I think he is even growing tired of all my aches and pains......(shoot I am tired of them) and then I am majorly stressed over the insurance, because hubby needs to find another job after 14 years and I am so afraid I will lose coverage.  Cigna who we used to have said you only had 63 days to get coverage and if not then there was a loop hole in the whole pre-exsisting coverage and most places you have to wait 90 days.  I wish there were some legit places out there to work from home at least I could feel like helped out some.............Oh well, such it life............I will get past this just in a major funk I guess. 

Thanks again.

bak94

Hi Stupidboob-it is so hard to eat right and exercise when you feel like crap! I totally get it. Thank goodness for our furry friends, they are what keep me moving also. Not having your mom or dad is hard, even in your 40's. I am also an "orphan". Lost my mom to ovarian cancer when I was 22 and my dad about 7 years ago. I miss them both terribly to this day. I get  anxiety from having schedules and commitments,  I fear disappointing people and coming off as a flake because I do cancel plans with friends because honestly I just don't feel good and it is easier to just stay home. It has nothing to do with them, but with my fatigue and anxiety. I also fear getting close to people anymore because I have lost so many to cancer, I don't want to put a jinx on anybody and I don't want to go through another loss. I know it is ridiculous.  We just gotta keep on trekin, I guess.

I had my port out today, had it for almost 3 years. So, all they did was numb the area, nothing to relax me, nothing. Well, of course, like everything goes for me, nothing is easy. I guess my body invaded it. Surrounded it with scar tissue, covered the 3 stitches that held it in place, and I guess the port was attached to my muscle. It hurt like you know what for him to cut everything away from the port. Took forever, he hit a nerve that sent pain all around to my back! It was crazy. I did not cry, but tears rolled down my face uncontrollably because of the pain. Unbelievable, will never let anybody cut into me ever again without a sedative. Then I asked if it will hurt later, he said no. WRONG! Again it hurts like you know what and I can't lift my arm without pain. Good thing I have pain meds for my back. I go for another steroid shot for my back on Thursday. Just so tired of pain. Well. anyways, my port is out.

tekwriter

Oh bak94 so sorry  your port went that way.  Thanks for sharing though.  I doubt any of us will ever let them take our port that way now.  You have saved us from a ton of pain.

tekwriter

Stupid boob there are some legitimate work from home although they are few and far between.  Check for moonlighters.com and other things like that. there are a few sites, you will have to look hard.  

I know how you feel about your father.  I have lost both of my parents then lost my only brother 2  years ago. It was devastating.  There is no one who I grew up with no one to share childhood stories with.  It is very hard.

encyclias

Oh, Bak, that is awful, something nightmares are made of!

I had my port taken out after a year and a half just last week.  Thankfully, everything went smoothly and the Lidocaine was sufficient.  But it turned out I was allergic to the adhesive on the bandage they put over it and after two days of intense itching, I finally ripped it off and found blisters underneath.  Fortunately, the wound itself was not affected.  It's finally all healing up now.  I could have kept the port if I had wanted to, but it really hasn't been used for over a year anyhow.

Hope you heal quickly; it's almost bathing suit weather.

Carol

InspiredbyDolce

StupidBoob - Can you sign up for Obamacare?  

Stupidboob

Bak94 you and I are so much alike..................I totally understand everything you said. 

I have not yet had my port removed, because I feel it is not over yet............I know not the right thinking but I had that feeling about removing it the first time.  I was going to have it removed on my 2 year (maybe) and then found out that the cancer had returned.   So, with not even being out of treatment a year this time, I am going to keep mine a bit longer.   Thanks for sharing your experience.  I am sorry that it hurt and still hurts.   Glad you had some meds.   These Drs. do this all the time and they think they know what they are talking about......WRONG!!!

Stupidboob

InspiredbyD I thought about it but my hubby heard something about it and cancer.............I will have to check back into it.  What he heard made it sound like it would not be good for cancer patients.

Stupidboob

tekwriter thank you for that website, I will check it out.  I have never heard of it before. 

I am sorry that you have lost so many as well.   You are right, it is devastating

I was so afraid I was going to lose my brother with his set back from open heart surgery and he is my only sibling too.  I have a half-sister but she would not pee on me if I were on fire.    My mama and I were best friends as well as mother and daughter, so that loss was horrible and she has been gone 10 years.   Daddy just a little over a year. 

FierceBluebird

Bak94,  {{{hugs}}}

gillyone

You do not sign up for "Obamacare." You sign up for a health insurance policy either through a private company or a state exchange where they are not allowed to deny coverage because of a pre-existing condition. For all of us, cancer. However, March 31 was the deadline - which has been in the news for months. I don't know what happens if you miss the deadline.

bak94

Thank you all for the kind words. Doing much better now. I hope my port story does not scare anyone, as most people go through the removal with no issues at all. I think my doc was surprised at how difficult it was to remove, I could see it in his expression, I knew he saw a challenge. He tried to downplay it to keep me calm. Well, I got through it anyways and my port is out. Stupidboob-I get it about the port being a security blanket. Unfortunately the last couple of times they tried to use mine it would not work, even when they did the enzyme thing. Now I know why! It was overtaken by scar tissue!