Calling all TNs

Titan, I'm so very sorry to hear about your friends daughter. I know in my heart and soul that she is 100% whole again. 

26 years old and dead from BC is the suckiest thing I have ever heard...so sorry Titan.

Cocker- my LE started as cording and webbing (terms used by my therapist) in the arm.  During my radiation tx I noticed pain in the back side of the arm along with some swelling in the rib area.  The arm started to feel "heavy" after rads were finished and the cording got really aweful to the point that I could not bend my wrist without pain or lift my arm above my head without the telltale pulling of the cords.  You could see the cords as well under the skin.  Then the noticeable swelling began in the hand.  It was the hand that made me seek help from the LE therapist.  I did not realize that the arm had gotten so swollen just really noticed in the hand.  If you pushed on the top of the hand it would leave a "dent" that would stay for a while indicating the fluid build up or lymphedema.  If you think that you are swelling than you need to see someone quickly as catching it early really improves your chances of keeping it at bay.  There are different stages of LE and I am only stage I and am already hating my daily life changes.  Also check out the threads for LE here.  There are several especially knowledgeable gals there that can help you so much with some great advice.  If you post through the LE thread a new one they are usually along within a couple of hours to help. 

Maggie

For everyone eating roast beef - I'm jealous!



Titian - sorry you lost your young friend, and have another starting down this awful path.



Annie - I'm glad your boil is healing a bit. Sorry you are having the numbness. Hang in there!



Heather- I loved hearing about the view, from your office.



Wishing everyone a good week !

Titan, I'm so sorry for the loss of your friend - 26 years old, how terrible.  That's too young to even have to worry about any kind of illness, much less this cr*p. We need a cure now.  I get so mad when reading about any advances in treatment when I get to the part that always seems to be at the end, "...could be years before available to patients..."

Bernie Ellen, I loved that- I actually bathed two cats today. I  had help, don't think I could have done it alone. One had to be shaved a bit on his back; luckily he is pretty calm, but I did give him a very mild sedative the vet prescribed to calm him.

Annie, I'm sorry about the swelling. I hope it is just from the taxotere/taxol and will go away when you are finished with the chemo. I had swelling in my upper abdomen from it and all sorts of weird pains in my elbows. I have trace lymphedema in my upper left arm but it has actually been bothering me less the last couple weeks. It is only 1.5 cm larger than the other arm, but sometimes it feels heavy.  I have a prescription to go to therapy, but I may wait until the first of the year because if I go now I will give up 3 regular physical therapy visits (20 allowed by insurance) and I really need those right now. I believe the physical therapy helps the LE also, as he stretches the MX scar in a way that I could not do on my own. 

Titan - SO sorry to hear about your friend.  I was diagnosed at 33 years and couldn't imagine having to face this at 26.  My heart and prayers go out to your friend's family.  I know she is whole again and rocking her boobs and flowing hair.  Heavan just got a lot brighter when she came in.  I'm really hopeful that one day this website won't exsit and there will be a CURE. 

I had a GREAT weekend with my family and hosted my in-laws for Father's Day dinner yesterday/last night.  Now I have a load of laundry on the line and I'm enjoying my coffee before starting the clean up from a great time with family.  I hope you all have a great day today xo

OBXK-I live in Northern VA.

Ladies -I loss my father last Monday. It was sudden. He apparently passed from a heart attack and there was nothing they could do to save him. I am all torn up inside, but I am starting to move forward. Today is my first day back at work and I feel so much love. My job sent a beautiful flower arrangement, it made me smile. 

Life will go on and I will cry from time to time, but I am okay, but busy. So If you don't see me post often I am here but busy.

HUGS to all us fighters. No matter what life throws us we come out swinging.

Oh Fighter, I am so sorry to hear about your father. I hope with time your heart will heal and only the wonderful memories of him will shine through.

Just got back from Nebraska last night. Thank you to all who sent good wishes to my cousin. She came through surgery well (single mx w/ no recon and port placement). She says her port hurts way worse than the mx side. We tried to find the humor in everything while we were together. Bernie, I read her many of your wonderful jokes! She is very small chested, so I told her now she never needs to wear a bra again- she can just put a band-aid over the left one and she is good to go!! She said if she could have lifted her arms she would have hit me!!

Titan- I am very sorry to hear of your friend's death. A friend of mine from high school lost her 26 year old step-daughter 2 months ago to this beast. She and her fiance married while she lay in her hospital bed. She was gone 2 weeks later. It is tragic when anyone passes, but the young ones seem to hurt so much more.

Cocker- I hope you begin to feel better soon!

Welcome to all the new ladies. We are getting to be such a big group- wish we didn't have to be a "group" at all, but I do think the world of you all! Every now and then I just want to say Thank You to you all for your support, humor and friendship! Have a great Monday!

Tif,

Yes 50 lbs! I was and am still a big girl, so in any other circumstances that would have been a good thing, but I think most of this has been muscle atrophy instead of fat. I just seem to stay tired all of the time.

Fighter..... so sorry for the loss of your Dad.   Thoughts are with you.

Cocker... glad you are feeling better and good to see you back posting    What's with the spiders.... I'm in Canada and dont see huge ones here... least where I live - I think the biggest I have seen is a wolf spider.  I am sure you in NZ get biggers ones.

TifJ - happy to hear your cousin came through the surgery OK.   Yes humour is a key to facing this bloody disease eh?  

Beccad, here's to the liver mets copying the bone and lungs on the shrinking.  

I cant keep up sometimes with all the posts...but hello to everyone, hope that you have wonderful days and evenings with very minimal SE's and lots of laughter.

Hello ladies, so much to catch up with today. 

Luah - thanks for reminding that my friend's hair is probably not growing due to the hormone therapy she is on for 5 years, which I hadn't thought about.  I am sure that's what it is.  I think she is taking aridimex.  Luah, I am glad you had all your "men" home for dinner for father's day.

Mccrimmon - Yes, my thyroid biopsy was on Friday, thanks for remembering it.  I did my bloodwork too last Friday for my 3 month routine oncology appointment tomorrow.  Do you get to see your bloodwork after 48 hours?  I get mine even before my doc sees it, and formulate my questions for my doc if I see anything out of range.  You are very lucky to have a window cubicle like the one you describe, you can probably write a book about the lovely scenery you will be witnessing every day with those beautiful deers, fawns, etc.

Tazzy - I am considered high risk for recurrence too, due to having some sort of epithelial cells on my right side (non-cancer side).  It seems like you have made peace with the fact that you have to let go of your right boob.

Kathyrnn - thanks for the information on the hair thickening products.  I will defintely research and give my friend the information.

Inmate - Did you take your walk?  Hope you had fun.

Gina - Yes, we do seem similar in our trials.  My surgical scars or seroma is also hard as a rock, however, it is softening just a little bit now.

Regarding getting approved for genetic testing, I had a confusing experience.  At first my genetic counselor and I applied for it, insurance strongly denied it, saying I did not meet the qualifications because no one in my family had had cancer.  I researched in my family, as they all live oversease.  Found out a first cousin probably had DCIS (her family did not even know the term DCIS).  By her description of rads therapy, I figured it was DCIS and told my counselor my "assumption".  Then I tried to look for other family members, found out another distant cousin had probably died from some sort of cancer.  I told that to my genetic counselor just verbally, gave the names and locations of these two family members.  She wrote a letter to the insurance company.  Lo and behold, the insurance company approved it, without any questions.  Is there any way you can find some distant cousins, aunts, uncles in your family and give that info. to the insurance company?

Annie - So good to hear from you.  You are amazing, you have the ability to make light of any situation, and have a great sense of humor.  The love of my life, my mother lives in Auckland.  When I read in your post that it is freezing there, my heart broke, as my 82 year old mom does not do very well in the cold, her body aches, her knees hurt.  She wouldn't complain though, even if the sky fell on her.  Annie - those numb hands will get better after therapy is over.  It does get back to normal.

Naan - Congratulations!  No rads?  You are very lucky!

Titan - Oh dear, it is heartbreaking to hear of a 26 year old dying.  What a very young life!

Riley - I am so sorry that you lost your dad in 2003.  I lost mine in 2004.

Fighter - Oh Honey, I am so sorry for the loss of your father. You are still in shock since  the loss of your father happened just last Monday.  It doesn't really hit you until much later. I hope it helps if I can just repeat this for you - that we are all visitors here on earth, and everyone has to return to their real home one day, some of us go sooner, others go later.

beccad - I am glad to hear that your bone and lung mets are shrinking. I hope Zeloda helps and gets that liver mets under control. 50 lbs. is a lot of weight to lose. Please try to eat well and put back some of those weight back on.  Worry about losing the weight later, but right now you need all that weight to fight the beast.  Prayers for a speedy recovery.

If I missed replying to anyone, please be assured I did read your post and sent you a mental response, either a prayer, a laughter at your joke, or just a whole lot of  love for healing for whatever issue you are facing.

Have a great Monday everyone!!!!

An update on myself - I am desperately waiting to hear the results of my thyroid biopsy maybe by Wed of this week.  Heard the doc is out for some days.

I am seeing my BS this afternoon for a look at my cancer breast.  Remember, the pain, the lumps and bumps - well it recently started even burning. The burning was so bad on Sat. that I woke up from it.  Good thing is that the pain, lumps and bumps have disappeared today, all of it is gone, and it is all very peaceful there.  The only concern now is the burning.

I am still freaking out though, not about the thyroid biopsy, but about this breast situation.  One more scary thing is that once again my tumor marker CA27.29 (normal is 0 - 34.9), mine is 20. jumping from 9.2 to 20.  When I had the breast biopsy it had jumped from 11.6 to 17.  This jump in tumor marker, although still within normal range, is probably due to thyroid biopsy and not due to cancer recurrence (I truly hope that to be the case).  All the other tumor markers, CA15-3, and CEA are all normal, no rise in those numbers.  Isn't CA27.29 specific for breast cancer though?

Is it remotely possible that when the temperature is very high, which it was on Saturday, 104 degree, that a rad. breast will burn? I swear, I had to get up in the middle of the night and look for some ice to put there.  It was not burning last night or today.  How weird?

I am very convinced that my thyroid nodule is a result of radiation, although my doc said that it is not the case, as they have such targeted rads these days.  Then how come my pet scan of 7/2010 said that my thyroid was unremarkable, had rads in 3/2011, and then in 2012, there it is, a 2 mm nodule.  Radiation is the one thing which is the most possible cause for thyroid nodules.

(((Fighter))) - so sorry for you, it's hard enough to lose a parent after they've been ill, but a sudden loss is so much more difficult. 

Becca - I started Xeloda last Tuesday, so we can keep each other company and hope we have no SEs.  So far, so good, for me!  I am taking 1500 mg twice a day.  And I found out last night that popcorn was enough of a "meal" to prevent any nausea.  We had eaten around 2 so I wasn't all that hungry when 7 pm rolled around.  So I made some popcorn then took the X and I was fine.

Tif - glad your cousin is doing OK and so glad you were able to be there to support her.  I can't imagine going through this without a strong support system, and I know many of you do exactly that.

Lovelyface - waiting along with you, sending positive thoughts for benign results.  I get a copy of my bloodwork during my doctor visit.  They are fast with the results, but I don't see it until I see her.  Then I get my PCP to release the complete results in my e-record, which is awesome.  I don't have to keep the paper copy and I can do quick comparisons of the last 10 or so results.

CS - glad you're boil is down to a simmer and your DH sounds like a gem!

Ladies - I have finished my travelblog of Paris.  So if you've been following along, the last installment is out there for your viewing pleasure.  www.mch-breastcancer.blogspot.com

Titan... that sucks about your other friend being TN - but one positive she can join this thread... where I have found so much support and comfort - and thats just from reading the posts.   fingers crossed her scans come back clear. 

Your final installment is brilliant Luv.... felt like I was there with you.

why am I so sad today....cannot seem to get myself out of a funk today.  I feel like I just wanna curl up and sleep for hours with no one and nothing bothering me.  Maybe it is the LE maybe it is watching the pain my son is going thru as his marriage ends maybe it is because BC sux and will not leave me alone and maybe it is just because.   hate days like this.  Just want my new boobies and put this bc bs behind me

Maggie

Mags... its just because.  I had one of those yesterday and I did just curl up and my wonderful DH knew when to leave me alone and get on with it and come and comfort me.   Not only are you dealing with bc you have your son to worry about too - it does just suck big time.   Get those damn emotions out - tomorrow is another brighter day.

Sending you hugs and positive vibes.