Calling all TNs

OBXK

Jen Jen- Gill has made all the points I would have. I'd also add that you don't want the extra radiation. You will feel a bit abandoned when your treatment is over and you aren't seeing doctors all the time. But then you'll get back into life and thevfear will lessen. We're all holding your hand. You've got this!

onvacation

Luv - wondering how you were doing with your latest treatment - nice to see you on the board.

LuvRVing

Kim - I had carbo #2 of 3 today and it went well.  They finally gave me Emend so hopefully it will solve all the nausea problems.  I will have #3 next Wednesday then we are leaving at 3:45 am on Thursday for Kauai...a last minute decision that replaced the trip we were contemplating to Hilton Head.  It just wasn't going to be warm enough and there would have been several days of rain.  My DH said let's go to Hawaii and we were able to put the whole trip together in 24 hours!  This will make up for the trip cut short in October when my mom had a brain hemmorhage and we had to go home early.  I am thrilled to be able to do this!

TifJ

Luv- I have a blue scarf I received free from Good Wishes and I have never worn it. Scarves just weren't me- I wore my wig. I'd be happy to send it to you. Just PM me!

Titan

luv...we are plannng a trip to HHI this summer....after Hawaii now..go to HHI this summer...!   We can do some shopping in Harbor Town, get some sun...and DRINK!

Liv..and all..I hear you on the emotional stuff lately...a friend of mine just had an lx today...turns out there was a bit more cancer than expected..maybe has traveled to the nodes...and her incision is pretty big...I'm just freaking for her...the tumor was small but has spread to the nodes...no pathology yet..but I'm thinking she maybe in the tn club with us.  She really doesn't want to know anything...which freaks me out because I wanted to know and still want to know everything....never been one to just do what the docs say...i have to know why and what benefit it will be and what other alternatives there are...I found most of my info here....I still think that we as patients need to be informed as much as possible...I did do everything the docs said (except for a port)...but at least I knew the why of it...

Hopex3

Jenjen..My MO says the same thing. You have to have symptons before we can do a scan. I asked my MO how will I know and she said you will have a pain that you have never had before. I feel I'm ok with that as I'm so ready to move forward with my life.



Sheryl..I don't care for the TN website either. Their discussion boards scare me. So I just stay here.



Luv..Enjoy your trip. I want to go there next year when I'm better. I've never been to Hawaii. Life is to short, so I plan to see some sites.

Cocker_Spaniel

Liv - sometimes it doesn't just rain it pours.  I have just heard my beloved sister has died in England.  All I keep doing is crying for her and for me!!  Some days lately are just crap.

Re scans.  We don't get them here unless an issue arises.  I think I would be able to tell fairly straight away,  as I have always been well, if something was wrong.  Plus I don't think I want the anxiety every time of waiting for results.  I do see my breast surgeon every three months and if I do report anything going wrong such as my port blowing a fuse I think they would be onto it pretty quick.  But still if you feel you need a scan I think I would be talking to my onco and letting them know you would feel better knowing you were having one. I guess it does make you wonder just what is going on inside these bodies of ours because I didn't feel unwell when they found my cancer on mammo so is there a chance I might miss something important.   

Luv - good to know you are about to go to Hawaii.  Wish I could come with you and Titan and shop until I drop.  Just don't have the inclination or the energy today.  I'm all cried and energied out. 

I don't look at the links anymore. I'm sick and tired  of seeing it written 'break through in TN'.  I don't want to wait I want it now for all of us.  What the hell is taking them so long to get going.  I just wish they would get their finger out.   

I feel like a crabby little shit today and can't even summon up a smile.  So will say goodnight to you lovely ladies and hope tomorrow brings a better day, at least its Friday. Big hugs Annie    

Cocker_Spaniel

I just keep thinking what a complete load of bollocks cause real life aint like this.  Hope I feel in a better mood tomorrow lol

 

liv-

aww annie = ((hugs)) what next, no more for you, you are certainly having your time tested right now.

so sorry about your sister.  just seems you are having one thing after another.

loves and thoughts. xx

titan i'll  come with you great holiday food, drink shop, food drink shop.

yes that would be nice.

lucky luv, enjoy

xx

LuvRVing

Titan - you let me know when you're going to HHI.   My DH loves to play golf, I love the ocean and shopping.  We'll see if it can work around my treatments. I figure by summer I can get some flexibility in my cycles.

Annie - this is for you:

My favorite hibiscus picture from Kauai in May 2010

liv-

hibiscus are so old and so beautiful always reminds me of my beautiful gran, she was a picture always in the garden.

xx

mags20487

Annie---I am so deeply sorry for the loss of you beloved sister.  You deserve a good cry so go ahead.  We are always here to listen and hopefull give some comfort.  All your TN sisters are here!

xoxo Maggie

Tazzy

Annie:  sending you positive mojo and a smile and virtual hug.  Sucks when you feel taht way.  And I agree about the 10 things you can do.... bollocks.  Except #2 - only NOW is important.

PinkyWI

Annie -- I am SO sorry to read about your sister.  Sending you lots of hugs.

Luv -- Enjoy your trip! 

For those talking about scans, my MO does not do scans either.  He says it is a quality of life thing -- the anxiety it causes can be debilitating.  He had to release one of his patients because she was so anxious seeing him for a check-up, he released her so that her primary care physician can do the monitoring.  I do understand the anxiety after having to have a biopsy last week.  Turned out okay but I sure was a lot more scared than I thought I would be.  My MO also says to watch for unusual lasting pain -- two weeks worth -- and that having a scan versus watching for pain will not change the outcome.  Meaning that watching for signs/symptoms, your outcome will be as good as if you had a scan.  Sorry, feel like I am talking in circles here.  O_o 

That said, I am glad to be in a TN radiation study as I feel I will be monitored a bit longer and possibly closer.  Ending treatment is really kind of scary -- almost as scary as beginning it.

LuvRVing

My PET/CT scans don't cause me anxiety.  After getting a diagnosis of mets, I expect the scans to show something not good.  The day they show regression or NED, then I'll get mighty excited!

OBXK

Oh, Dear Annie - I am so sorry for your loss. It must be difficult living so far from her family at a time like this. I'm glad you have your own dear ones to help you through this difficult time. I lost my brother a couple of years ago. I felt like a bit of my childhood died with him, but then I realized if I told my own children all my stories, they would live on. Sending love your way...

QueenKong

Random thoughts today.

It looks like Hillary Clinton had botox. I want botox but I don't know if we're allowed or if it's advisable. I want a fantasy vacation to go on after all this is done but I have nothing in mind. 

I'm confused about what to do with my diet because I am supposed to stop with the vitamins and antioxidants through rads. I didn't sleep much last night and I feel bitchy and anxious. It was my one day to sleep in but no.... ~sigh~ kid woke me up real early and couldn't sleep. I don't even want diner and it was too cold to walk for me today. 

LAUREN - I just read your post about being in the hospital. What's going on? I was in the hospital in November. I was sick, they thought it was blood clot at first. There is all kinds of scary with this sort of thing. I had shortness of breath too. Where are you in your treatment? I'm going to try to look back and see if it's similar. I ended up with pneumonia. Please let us know what is going on. I am worried about you.

5thSib

Annie, so sorry to hear about the loss of your sister. I am one of eight and we lost a brother 2 years ago to lung cancer. There is a 20 year range between oldest and youngest, but we have always been a close family. It was really hard losing that first sibling. I think it made us realize how fragile life is. I am #5 of the siblings to be diagnosed with some kind of cancer. The other 3 are thankfully in remission.

I had my second Taxol treatment today. It has not been too bad compared to AC. The constant watering eyes are aggravating. My nose runs some, also. The NP told me the eyes were a SE, but she did not think the running nose was. I've had restless legs today and a slight headache -- no nausea so far, which is a blessing.

suzette5956

I finished chemo in July. I have been having niggly pains in back of my head. Did anyone else experience this. Don't know if I'm just being paranoid or not.

Hopex3

Annie, I am so sorry to hear about your sister. I have three of them and there is nothing like sisterly love. Your just not having a good time now but your TN sisters are always here for you!! I'm thinking of you!!! Hugs!

NavyMom

CS: My deepest sympathy to you during such a sad time.  Sending you love and support.

LUV:  Have a woop of a good time on your trip.  I see a pina colada in your future!

Lauren:  How are ya doing?? hoping to see a post from you soon.

To add to the scan conversation--I feel fortunate because my Onc lets me make the decision.  If I am feeling worried and anxious, then she will order a scan.  Of course some type of symptom has to be documented for insurance to approve it.    Last spring she even offered for me to get a scan...I declined because I was feeling good.  I do think that being smart about radiation exposure is important.  BUT if your nerves are making life miserable and you need the scan for peace of mind and quality of life, then I think the Onc should take your lead and order the damn scan.  Its your life and you deserve to have a say in how your medical team is caring for you.  Thats my 2 cents.

Mumtobe

Hi ladies,

I'm almost finished chemo, next Wed is my last one, and then I begin rads. Was just wondering how long it took for you to get your ports removed (for those of you who had ports)? I read on page one of this thread that one of the ladies was going to leave her port in, am wondering why?

Much Love,

Carol x

Tazzy

((((Annie)))) thinking of you.

LuvRVing

NavyMom - maybe a few MaiTai's, too!!!

Taxol gals - I didn't have the tearing problem, but my ears got plugged up.  So I used 12 hour Afrin and it just dried up the fluid and cleared out my ears.  You might want to give it a try.

minxie

Annie - so sorry to hear about your sister, and the emotional rough times you're having. Life after cancer is such a roller coaster of ups and downs, it seems.



Has anyone heard from Lauren who was hospitalized ? Lauren, how are you doing now?



About scans- I'm in the only with symptoms club, which is fine by me because the stress they cause me induces panic attacks. Which brings me to my update - seroma . I noticed over the weekend the TE boob was getting big, and then this week HUGE - bigger than the other already! I called the PS office and my doctor is out this week but the nurses started to freak because they were concerned about a hematoma. I had to teach that night so I couldn't go in until the next morning. When I did, they diagnosed fluid, which makes sense... I've always had issues with drains coming out too early - guess I'm juicier than expected. The crappy part is they sent me to my old breast surgeon because they are the only place that can do ultrasound - guided needle aspiration. I HATE my breast surgeon's office -so many horrific memories in one place. But they drained off 6o ml of fluid and I feel better. That's the problem with no sensation in your breast - I had no pain but a horrible soreness in my ribs and I couldn't figure out why!



I blame the lice for all this. I know I've been doing way too much when I should have just been recuperating. By the way I did end up calling the nitpicker, who scoured my head for 2 hours. I'm resisting the temptation to check for more nits now, I've been ordered to take it easy so I'm staying in bed today!

Sjesse12345

Hello lovely ladies - I haven't checked in on this thread since before my 3rd chemo.  Well I saw my Onc the day before and mentioned I was getting antsy because the tumor did not seem to be shrinking and so she suggested that we switch it up the next day from the FEC to the Taxotere already.  I have since found out from my GP that she (the Onc) saw that I was not comfortable with how slow things were going so that is why she suggested we swtich it up.  Nice to know that she actually listens and takes into account how the patient is feeling.  The Taxotere was definitely not as easy as the FEC, holy smokerinos!!  Day 3 the bone pain came and lasted 3-4 days (have some pain meds for next time now), during those days the big D came finally had to take some Imodium as I was getting weak from it (bought the Jumbo size box of Imodium from Wallyworld so I'm ready for that too).  Am now on day 17 and have been feeling much better for over a week now.  Next round to come next Wednesday.  Taxotere again, the plan is to do at least 3 of those then reasess, if all is good then continue on with Taxotere if not then switch it again.  As tough as the Taxotere is if it's working then I can put up with any and all SEs. 

Also, my GP gave me a prescription for Metformin (with Onc's ok), started taking that this week, just another piece of ammo, I think us TNs need to gather as much ammo as we possibly can.  Trying to exercise but was down on my butt for the first week with SEs then this past week it was cold (-28C and -42C with the windchill, so definately no outside walks then ).  Finally got out for one yesterday, yay.  The low fat thing is going fine on the days I'm feeling all right but while doing chemo there's days you just eat what you can to keep up your strength.  Have lost weight though, not enough to get any lectures from the Onc (have weight to spare so I don't think they're super concerned I'll waste away quite yet).

Taking advantage of feeling human and heading out to dinner with some girlfriends tonight, I try to pack in as much social activity in that 3rd week as I can!  Going for Creole food, YUM!  I hope everyone has a great weekend.

InspiredbyDolce

Hi everyone,

Please weigh in ... here is my latest update to my MRI - what do you all think?  

I had mammo/us in October to get clarificiation on a small scar tissue area at base of right implant - location is important and this was near or at original tumor location.  Findings were not suspicious but not conclusive, they recommended 6-month follow up.  I waited 4 months, and last week had MRI (both traditional MRI and the new Diffusion MRI).  The MRI report says:  "no findings to suggest malignancy", but was given the birads 3 (probably benign) and follow up with initial short-interval ultrasound.

I've already got a call in to my PS to conference with my BS, and go ahead and get me into surgery and get this out. From a discussion in December, PS thinks it is scar tissue from when he had to adjust my right breast downward or possibility that the sling folder over.  Since my bc history is TNBC, I have requested going for surgery again to settle this once and for all. The nurse at the PS office, completely understood my request, as she brought up that TNBC patients have less options, so lets minimize any and all posibilities.

What do you all think?  Have any of you had any experience with a birads 3?  I've never heard the term until last week!

Thank you for your insight and help!

- scar tissue post-mastectomy, MRI birads 3

InspiredbyDolce

This is an update - I read online that birads3 has less than 2% risk of being malignant.

SherylB

Minxie,

I spoke with Lauren 15 yesterday and she is home. I will hope she will come on here soon and let everyone know how she is doing.

Sheryl

christina1961

Annie,

I am so sorry to hear about the loss of your sister.  ((((Hugs)))) I will be thinking of you and your family.