Calling all TNs

Luvmydobies

You're welcome Stupidboob! The Youtube video really helped me to do it the right way. I'd post a link but am not very computer literate! Sorry....

Nettie, try to enjoy your vacation!! Did I read somewhere that you have scoliosis? If you do, could that be why your back hurts? 

Nettie1964

Luv, yes I have scoliosis, but I never had pain like this at all before. I mean not even close. And this pain affects my legs abd 

Luvmydobies

Nettie, I'm so sorry about your pain. Maybe you should talk to your Onc and see about a scan for piece of mind at least. HUGS!!!

Nettie1964

I've tried, I've asked for scans. I was told no. 

Luvmydobies

Ugh Nettie. I hate that! My primary doc has told me if she thinks I ever need one she'll order it if my Onc won't but that would cause a conflict because I would have to tell him if something ever did show up. Sometimes you have to advocate for yourself though I guess! Please enjoy your vacation! XOXO!

Titan

Hey all....I hear you about these mystery type pains....ugh... I still think the 2 week rule is a good thing.if you can follow it.

Remember...even if we are cancer patients...we can still get normal stuff....like colds, flu, headaches, arthritis and it really isn't related to cancer....one time I had burst blood vessels on the cancer breast and was freaking until I realized that I had lifted 30 plus pounds over my head to a very high shelf...they went away in a few days.but I felt the terror! 

so..anyway..maybe not much help but remember...we really are "normal" and we still can get the "normal" stuff do...it just freaks us out alot more...

tnbcRuth

hi Titan! Thanks again for getting all of us triple negs together!!

I am so glad you posted that. You're absolutely right and it helps to be reminded. Turn the calendar page, close the door and get back to your life  There is nothing to be gained by carrying it around like a ball and chain

I know it doesn't feel safe, but take those first steps into your new life and leave the "C" word behind  Been there done that Trust me

Stupidboob

nettie1964 I am sorry about your pain, but you know a little bit a piece of mine might be brought to you if you just go to the ER and tell them you are hurting and don't know why.  I know expensive but at least you might get a cat scan...........then if anything abnormal shows up, you can take it to your oncologist and go from there.   It SUCKS that you would have to do that, but they just don't scan some of us and I think that is where we all get in trouble....(my opinion)

redheeledwomen

Hello All,

I've been having headaches since last Monday.  So today I met with my MO who offered a brain MRI.  I am going next Monday for the scan.  My MO is really open to doing whatever I feel is best.  I think that I might be experiencing side effects from the chemo or maybe I'm developing migrains.  Not sure.  Anyway I'd rather be safe then sorry.

I'll let you know the outcome of the scan sometime next week.

Gramof2boys

Hi all, haven't posted in awhile. I have been in reconstruction mode. I had a hip flap on August 20 and was doing great. I went back to work 1/2 days at 5 weeks post op  and was doing ok . My non canser side looks amazing, but my radiated cancer side didn't fare so well and they removed the flap last Friday ( seven weeks after my surgery) the blood supply just wasn't good enough. Now I have one nice foob and one crater. My second stage of reconstruction is in Dec so they will fix it then. Ready to get it over!! My MO has me scheduled for a follow up CT scan in November but so far I remain NED. Yeah!!!  We are also taking our grandsons on a surprise trip to Disney World in November to see it decorated for Christmas!! I didn't schedule my CT until we got back,, lol!!  Just a precaution!! Hope everyone is doing well.

JoeyJamesMom

Hi, girls :-)

I have a few questions that I hope someone wouldn't mind answering for me, please.

I am Triple negative and currently going through chemo.  I finished my 4 Taxol treatments and I have

completed 2 A/C treatments with 2 more to go.  THANK GOD!!!   Between the SE's and this chemopause,

I am having a heck of a time, especially, with these hot flashes!

Anyway, after I finish up chemo I want to have a double mastectomy.  My Mom had breast cancer 3 different times,

and unfortunately, she lost her life to it back in 2011,  so I am not taking any chances with having this return.

Question is I never realized until recently that there are a number of different types of mastectomy.

Would anyone mind sharing which mastectomy they chose and why?  Do we even have a choice?

I want as much gone as possible.  I am not worried about nipples.  I will just have tattoo's :-)

Last question, if all goes as planned I should finish chemo in a month.

Do most MO's make us wait a while after finishing chemo to have surgery?   I asked my MO about this last Thursday

thinking that I should make an appt. with my BS to get the ball rolling for surgery, but he said to hold off.

Does anyone know if this is common?  I do not want to finish chemo the middle of Nov. and wait until January for

surgery, you know?

I would greatly appreciate any information or experiences someone feels comfortable with sharing.

Thank you all for being here!

Stupidboob

JoeyJames............sorry you are here......:(   It sucks we all have been invited to a club we would not choose to go to.

I had a mastectomy but my doctor chose what kind, except I did tell them I wanted it all gone.   It did not do me any good though as it came back in the lymph nodes up the chest and between my pectoral major and minor muscle.  I thought if I had a mastectomy I would have NOTHING to worry about.....I was wrong.  I would still have the mastectomy again though. 

I am not sure the exact amount of time, but everyone I know personally that had the chemo first, did have to wait like a month to 6 weeks before surgery.   Your body has to heal some.

Best of luck

JoeyJamesMom

Hi, Stupidboob :-)

Thank you so much for sharing this with me.

Ugh, it makes me sick to my stomach, though, thinking we go through ALL of this and the cancer still comes back!  I had no idea

how common this was until I started reading these threads.

Back in 1986 my Mom had breast cancer, she had a lumpectomy, went for a months worth of radiation and lived another

20 years without breast cancer.

Granted it did come back, but it took approx. 20 years.

Man, I hope we are all making the right decisions.

Sorry, just thinking out loud.

Hope you have a great day!

TifJ

Hi JoeyJamesMom. I did surgery first, but I was anxious to have my tissue expander to implant exchange surgery as soon as possible after finishing chemo. My plastic surgeon said as long as my white counts were good I could have surgery as soon as 6 weeks after chemo. Unfortunately, my port became infected and I developed a frozen shoulder, so my surgery ended up being delayed for 4 months! I think as long as your doctors are happy with your blood work after chemo you can have surgery fairly soon.

JoeyJamesMom

Thank you, TifJ.

Wow, you went through a lot!  I am sorry.   I pray you are healthy and well now.

Another question for you girls, please.  I have read where some MO's will check blood for tumor makers , but others will not.

Anyone have any thoughts or experiences with this?   It is so difficult trying to decipher what is true/accurate and what is

not when we are all told different things :-(

I meant to ask my MO last week and completely forgot.

Many thanks!

Luvmydobies

I've also heard mixed feelings about tumor marker tests. My Onc says they're really not reliable because many things can raise them. He doesn't do them. He's been doing this a long time as he is in his 70's. I have to trust him but I do wonder if they should do them. I still don't understand why they don't do scans after treatment unless symptoms warrant one! It's very worrisome to me. But they say if cancer spreads is doesn't change the outcome even if you catch it sooner rather than later. It makes no sense to me but I guess they know more than we do. Maybe someone with more knowledge will help answer your question better. I'm just telling you what my Onc told me.

JoeyJamesMom

Thank you for the information, lovmydobies :-)

Hope you have a nice, calm and worryfree day!

Stupidboob

JoeyJamesMo yes it sucks and I hate sharing my story as I would never want to scare someone but at the same time, I do want people to be aware.  When I went in, I was only going for a 3 month check up and I thought all was well and we would leave get our celebratory milkshake and go about our day...........wrong.......so I share so others will keep their appts. and also it can play into their decisions for themselves.   I hope to get 20 years.

Stupidboob

Does anyone know if Lymphedema can cause shortness of breath?

Radical2Squared

stoopidboob,

I'm not sure about that, but right now almost everyone I know has an upper respiratory infection....THAT could and it's that time of the year!

Luvmydobies

Stupidboob, have you asked anyone your question about lymphedema on the lymphedema forum? They may know. 

JoeyJamesMom

Hi, again Stupidboob :-)

You mentioned this above:

It came back in the lymph nodes up the chest and between my pectoral major and minor muscle.

How was that found?   An MRI, CT Scan, or something else?

Sorry, I do not know anything about lymphedema, but like Radical mentioned a lot of infections are going around :-(

Personally, though, I would get it checked out sooner rather then later.

Hope you feel better soon!

Binney4

Stupidboob, lymphedema doesn't cause shortness of breath except in very advanced cases which have been untreated for several years. Well-controlled lymphedema would be VERY unlikely to ever reach that stage.

As others have said, this is a bad time of year for the upper respiratory system. Please take care!

Gentle hugs,
Binney

Stupidboob

Radical2squ:  I am hoping that is all it is. 

Luvmydobies:  I have not but I did call the lady today that treated me for Lymphedema and she said that not normally but anything can happen.   I can come back in if I feel I need them.   I might at a later date.

JoeyJamesMo:  Thank God my breast surgeon was still following me and I was there for my 3 month check up and ultra sound.  That is how it was found and then even though I could tell from the girls face that it was not good, we then had to do a biopsy to confirmed and unfortunately it was back.........:(    I then switched oncologist and started normal Pet Scans, this lady gets it done.   When I went in this time and told her about the breathing and what the NP said about allergic asthma she was not comfortable accepting that so she had another Pet Scan ordered.   I like that.  I don't like having to go, but I like that she will get stuff done.  I am getting the ball rolling.  I have an appt. Wednesday to do some breathing test and I talked to the lady today who did my Lymphedema treatment in the past and we got a plan to try, and I will see her or some one else if no improvement.

Binney:  thanks for the support.

Thank you all for the support and input.

JoeyJamesMom

Stupidboob, I am glad to read you have the ball rolling, so you can at least get a piece of mind.

And no one could blame you for wanting one considering all you have been through.

I can imagine when I finish up with the chemo and surgery, I am going to fear the worst whenever

I feel the slightest bit of pain or discomfort.

I guess it is just another thing we all need to work out.

Hope you have a wonderful day!

feelingoverwhelmed

Hello.. haven't been on here in forever.. why, I don't know because there is so much good advise and answers!! Thank you all for being on here!!!!! 

 I am getting ready for my last dose of taxol on the 30th.. yeah!!!! The numbness in my hands is aweful.. have it in my toes too but the numbness there isn't as bad.. my hands and feet feel swollen .. Will this go away?? My onc told me too it could be carpal tunnel since the main numbness is in my thumb s and index fingers... And while I am asking questions, might as well throw them all out there, right? Constipation advise anyone??? it sucks! Weight gain??? I have gained 11 lbs since I have started all this.... And the silly hot flashes.... Goood gawd!!! Will they quit??? Then..since I started my chemo before my mastectomy.. how long do they make you wait?? 

feelingoverwhelmed

I like your thought

simplelife4real

Hi All,

I'm sorry not to be replying to individual posts, but I just wanted to comment to Brook and Sadie.  Brook, I don't know if it is feasible for you, but have you thought about getting a second opinion for further possible chemo?  What clinical trail are you going for?  I hope it all works out for you.

Sadie, I'm glad you are getting further testing, but I hope they don't find a thing and your breathing problems are all asthma related!

We are in the middle of week 3 of a wonderful 4.5 week vacation travelling out west with lots of camping (and not much internet).  Last weekend, we were in Las Vegas and I got to meet 7 other ladies from around the country that were part of the breastcancer.org Sept 2013 chemo thread. It was a fantastic experience.  One of the other ladies is also triple negative and it was particularly nice to get to meet her in person.   Here is a pic from the gathering.  I'm in the front row on the far right.  The other TNBC'er is in the back row on the far right.  I think we all look great...particularly considering we were all bald this time last year! 

MomMom

You all look amazing!  How fun to meet up with other posters.  Love it!!

anotherNYCGirl

Hi Simplelife4real!    Wonderful that you were able to get together with others from these boards!    Thank you for posting and for the photo!

As I sit here without energy, hair, eyebrows, or eye lashes, your post and photo brought tears to my eyes. It is reassuring to see how you all look, and that things will, indeed, get back to 'normal.

Keep enjoying!!