Calling all TNs

mccrimmon324

Thank you everyone for your input.  I'm feeling slightly less tired today, would probably feel better if it hadn't stormed all night and I wasn't wearing my 60lb Aussie sheperd as a hat all night.  Now he'll get to sleep all day while I go to work.  As of today I have 5 weeks until the end of my last cycle, I don't know if I'm more excited to finally get this over with or just scared of not having chemo.  I will be moving onto Rads though.

Ruth, I'm so very sorry about your friend, my prayers are with you and the families.

Sugar77

Ruth - so sorry about your friend. Please accept my condolences.

MBJ - that sounds like a big move.  What prompted it...a change or a job transfer? Do you have family there?

Paintingmywaythru

sandehosgirl...thanks for your input. I tried to swithc onc after my second treatment but because the hospitals are about the same distance away ...25 minutes they told me that they never switch during treatment but unless I had moved and was being referred. Oh well..I will see if I can switch now.

lisaorock

Hello Ladies,

@Ruth- I am so sorry for your loss.

I am here again to vent a bit. I was declared NED since June of this year.  I just feel like there is this black cloud following me.  I hope there is a day somewhere in my future where I don't think about the cancer.  I'm so afraid I won't be around for my kids as they contnue to grow up,go to college,get married,and grandchildren! I love hearing the positive stories!!  I should mention tomorrow is my three month check up with my onc. My anxiety level is so high!  I know I should think positive but I'm petrified:( I have done everything I was supposed to do to try and keep this "beast" from ever coming back.  I know there are no guarantees in life but I feel like I should be doing more to prevent a recurrence. I have had a bilateral mx,breast reconstruction,hysterctomy,and 8 rounds of chemo in between the surgeries!  I know I am also emotional wreck at times because of menoapuse!

Thanks for listening to me vent! For those of yoy in the beginning stages of treatment, or in the middle of it....you will make it through!  You are all stronger than you think:)

Take Care,

Lisa

BernieEllen

Ruth, sorry for your loss

Teka

tnbcRuth,

There must be so many fond HS memories to share with her family.

lynniea

HI ladies I had my 4th TX of radiation only 26 to go.  I am now doing lymphadema TX to get sleeve for me.  When I finished chemo I was thrilled I bought the nurses and the DR office edible arrangement.  I told them I would visit but not return. 

Babs37

Hi everyone. Went for my mri this morning and met a wonderful woman who had TNBC 22 years ago and has been cancer free ever since. She told me that back then, her cancer was so aggressive that they made her do her chemo and rads at the same time. She has the BRCA gene too. Her sister has the gene too and had ovarian cancer 10 years ago and is cancer free too. They were both there for an mri. Their stories made my day...........

Have a great one.

MBJ

I love to hear stories like this!!!

Kelley41

Why can I not find the right words to comfort a friend...we were both diagnosed at the same time with TNBC.  We were friends in High School and reconnected with the ugly diagnosis.  She left the hospital the same day I was going in for my surgery.  She lives in another state and we reconnected via Facebook.  She contacted me over the weekend and her cancer has come back and she now has mets...she has a 4yoa and a 6 yoa and her mother in law has stage 4 lung cancer and her father was just diagnosed with stage 1 prostate cancer.  I am so angry, sad, and confused!  I have been just sick of this news all weekend...my husband does not really understand my worries and fears...It just seems that people forget but...I worry everyday if "it" is going to come back - I know this is not healthy but it is realiality!

SunnyCoconut

MBJ - My little sister just transferred to University of Louisville.  (We are 22 years apart)  She really seems to like it there.  Maybe if I get a chance to visit her this year, you and I could have lunch!  Good luck with the move.  I hate packing! and unpacking!

ksmatthews

Babs great story!

Kelly so sorry for your friend, I cant imagine how she feels. 

MBJ

Kelly:  I am so sorry-you and your friend must feel completely overwhelmed by this news.  Hugs.

SunnyCoconut:  I would love to meet up with you!  I also just found out that a friend of mine flies there regularly, so I won't be completely without friends.  We are just 10 minutes from everything and there really isn't any traffic there, especially compared with Los Angeles.

mags20487

babs---love the story of survival. 

Kelly--sorry bout your friend --all of us have the fear for sure.  Going to get first pet scan friday and have a lump in my throat just thinking about it.  I too had a good friend die 7 yrs ago from BC.  It is always in our minds but I just try to supress it as I cannot control it.  I can either let it affect my quality of life right now--when I feel healthy everyday or not.  I choose NOT!  Stay strong for your fight and do not give up.  This is a forum full of strong women like you and me and we will do this together!

Maggie

belleeast

hi all, had my port put in today,getting ready for chemo.

can someone tell me what the tip is for the neulesta shot clariton/zantec? how much, how many days, can i use generic or does it have to be the real deal? thanks!

Titan

I don't think that we will ever get over the fear of our breast cancer returning....yeah..it will get lesser in your mind as time goes on but it never really goes away.

Coming on here, for me...goes both ways..one is that I NEED to hear about all of you...all of You are a part of me now and I can't let it go...I care about every one one of you and know that you care about me too..I want to hear from you all...we all are going through this crap..if it is just finding out the diagnosis, going through treatments, or trying to find our way on how to live after treatment..different feelings but basically all the same.

The "normal" way is gone..guess we have to face it... and that is hard to do...

Flautalee

Titan - 11 years ago, an acquaintance (who was a 9 year survivor then) told me that for her, the worry about recurrence was like turning down the volume of a radio. In other words, at first it was all she thought about but as the years passed, the worry subsided into the background. I was a newbie then, and as you may know, I was in remission for almost 11 years. So now I'm a newbie again and look forward to that volume lowering into the background again. I remember feeling that I had the word "CANCER" written across my forehead, but that eventually went away. I am really looking forward to being done with chemo and then radiation and then finally reconstruction - about 2013 spring, I think. You all are helping me a lot. Best and no SE's!

Titan

Thanks flautlee..you got it about the radio/volume....the radio is background music to me now..low..but still there...

Hoping for your radio to just be background music to you very soon....

Funny stuff about the "cancer" on your forehead...now..at the store or just being out with friends at events and at work..no one even brings it up anymore...if someone asks me how I'm doing I have to take a minute to realize that they may be asking about my BC...and I'm not even 30 months out yet... (Sept 20 to be exact ha ha)...

Good friends and otherwise do forget....I think that may be a good thing....when someone asks how I'm doing I just want it to be a social thing...

riley702

belle, I took a Claritin the day before and about an hour before the Neulasta shot. I've heard others say they just took it that morning before their shot. I didn't take Zantac, but I was already on Prilosec. I just used generic Claritin. My first shot, I felt like I had the mother of all flus or got hit by a Mack truck for about 3 days. I got the Claritin hint when I was here bitching about being achy. There was a huge difference for me with the rest of the shots. But there are some ladies here that it didn't work on, so it's not a guarantee, but taking a Claritin is easy, can't hurt and might help. Good luck!

mccrimmon324

belle, I've been taking a clariten the day off and for 2 days after each nuelasta since my first treatment.  I've also been taking Aleve twice a day on those days as well.  Honestly, I really have had no bone pain at all.  I feel run down and maybe a bit achey, but I'm also in my bad days of chemo.  I can't tell you if it worked for me becuase I haven't gone without it but I have no problems with the shot.  When I asked my oncologist nurse about this she said they believe it works becuase the shot itself causes imflammation when it's forcing your body to make WBC's.  The Claritin and the Aleve acts as anti-imflammatories,

sandejosgirl

Anyone here follow a ubber low-fat diet? I talked with the dietician on Tues at my LAST Chemo and she said that's what the studies support as the bed for TNBC. Well, that and losing my pregnancy weight.

~Stephanie

mccrimmon324

I'm trying to stay low fat, my last chemo is on the 22nd so I'll really start after the last round along with lots and lots of cardio.

Luah

Stephanie: Right after treatment, I followed a very low-fat diet - 20% calories from fat. There are studies that show the benefits of that on TN recurrence. Now after a year, I still eat low-fat but have eased up a bit; for one thing, there are a lot of good fats out there  - nuts, oily fish etc. that should also be part of a healthy diet. Also, many low-fat choices (like yogurt) bump up flavor with sugar - and too much of that isn't good either.  

Fighter_34

MBJ-good move!!! I am all about stress-free these days. I am changing jobs because of this. This is new life mantra now besides taking care of self and letting go. Sorry for rambling as you can see it's my passion NOW!!! Good luck girlie...

Seizures scare me!!! My brother had seizures when we were younger. He had a big fall when we were younger that triggered seizures in his teenage years. Oh by how I would cry. I was so SCARED of loosing my big brother. I would run and hide. He cried and cried when I told him I had Breast Cancer he was on the next thing smoking when I had my BMX. I woke up to him and my husbands smile. My mom is tooooooo dramatic they had her in the waiting room driving people crazy.

Paint- I felt so bad by the end of TX, but it was something about that last TX I felt no pain on that day I could have done a FLIP!!!

Fighter_34

Babs37- YES, that really lifted my spirits!!!! It's so draggy on the east coast RAIN and more RAIN.

Earthquakes, Tornados, and now Flooding geeessh what's next 10 feet of snow!

MBJ-now you will get SNOW!!!! Dogs love jumping around in the snow.

Paintingmywaythru

Kelly41..it is not about the right words it is about realizing and being there for her to talk to. Sometimes nothing can be said and we can only pray this ugly beast leaves us. your friends story is so sad and that is what one  feels.  I am so sorry.

MAgs20487 Love your strength and words.

Lynniea hope all is going well with rads. I start October 3rd.

Babs 37 ..wonderful uplifting story to hear.

Belleeast...hope you are feeling OK. I was scared my first chemo but it was easier than I imagined, not the SE's but the actual time in the chair.

Titan..yes we all need each other and

Flautalee...it is hard for me to turn that radio down as yet but I hope someday I will.

Belle..I think the claritan  with aleve helped me a bit but I am not sure...glad it worked for Riley and others....my first chemo the bone pain was horrendous but it improved the second and third.

Sandyjoesgirl....I know that 15% fat in a diet has been shown in a study to reduce the reoccurence of breast cancer but int hat study they aimed for 15% but found htat their patients ate an average of 23% fat daily and had significantly owered risk...definitely something to think about. I also read that there was a study that said one should never heat food in the microwave in palstic containers and one should not drink out of plastic disposable water bottles becasue the release some cancer causing substance. On this site there is an articlea bout the low fat diet.

I have my last chemo  tomorrow and after all my SE's are over and treated I will ask for my records to be sent to MGH as I am changing to the onc there for follow ups...really glad I am making this move...doing the same with radiation therapy but wonder what peoples thoughts are...

there is a great local new stand alone center close ot my work  and I liked the radiation onc I met on Tuesday or MGH...a 30-35 minute trek. Need a little guidance on whether the radiation is likely to be the same all over, or if I should jumpin and switch all to MGH. I know we get one good shot but wonder is the radiation all that different or fairly similar everywhere. Well...I also have to meet the rad onc from MGH next week..really felt competent about the one at the stand alone center....more dilemna's for me.

Frances how are you doing?

Rainy here today but must get to work...client asked if I was wearing a wig and I just said I ahd a great hairdresser... some people need not know.

Suze35

Stepped down my Ativan dose two days ago and am dealing with withdrawal symptoms - arghh!  I went from 0.5 to 0.25.  I think I'm going to need a bridge drug.

Stephanie - I do my best to keep my fat under 20%, but do allow myself some leeway.  As Luah noted, there are good fats out there, so I don't mind going up a bit if I use olive oil, eat walnuts, that sort of thing.  I also try and exercise 3 hours per week.  The WINS study showed that under 20% reduced recurrence rates for TN by up to 42%.  My doctor is a big proponent of diet/exercise.

Babs - I love the great stories.  Thanks!

Really spaced out - I'll have to come back when my Ativan kicks in, lol.

MBJ

Belle:  I didn't have any side effects from the Neulasta shot but it is best to have it in your belly or wherever you have the most fat cushion.  It helps absorb it and it's easier on your body.

fighter:  Thank you!  I am really looking forward to a slower paced life.  Strange how your priorities change with BC.  I used to thrive on the crazy pace here.

painting:  Congratulations on your last chemo!!!!  It's time for a celebration.  I was soooo happy to have me taste buds back and to get back to a more normal life.  Hugs! 

Luah

Just got back from my regular onc check-up. All's well and I'm excited to be coming up to my 2-year anniversary!

I'll have my annual mammo next month, but not sure I'll get my annual MRI request approved due to new guidelines in Ontario. I think I've heard some of you talk about new onc practices in the US now referring TNs for MRIs... do I have that right? Do you have to meet certain criteria? (my original tumour wasn't clearly evident on the diagnostic mammo, which is how I pushed for an MRI last year post treatment.) 

Sugar77

Luah - there is a new "high risk" screening program in Ontario that incudes MRI and Mammograms for women over 40 but my GP says I don't qualify.  Actually it's because I'm the index case.  From what I gather, my daughter and possibly my sister (if she was under 50) would qualify.  Go figure! Anyway, my medical onc wasn't even aware of the program.  I think it's mainly for those who are deemed high risk but haven't actually been diagnosed. My mammogram is next Wednesday.