Calling all TNs
Comments
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tnbcRuth, thank you for the kind words about my hair. I'm still struggling to find a workable hair style, as my hair came in just like baby hair. Nine months out from chemo, and its still like baby hair.
Ruth, What SE's are you having?
LauraJane, and Jenn3: Love and strength to you both.
Linda, my heart goes out to you with deepest sympathy.
Susan
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Not a joke, but still some humor:
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Just got back from my pet/ct scan and I had 90% reduction in my internal mammary/mediastinal nodes, almost back to normal size and they couldn't see any activity in my breast, although not the best test for the breast.
I am confused. Had a long talk with doctor today. I have 3% er positive 0% pr and her2+1. He has decided that since I have the 3% positive I am not getting carboplatin with my abraxane, but I am getting avastin for 2 treatments if ins. will pay and zometa for 3 years starting monthly then going to every three months ( I think I have that right) and more avastin after surgery. Plus he said he wants to put me on hormone therapy and possibly herceptin, as they are using herceptin in +1 patients now.
Do any of you have any percentage positive of er? How about her2? I am thinking I am not triple negative, or am I? Doc said I am a complicated one!
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LauraJane-how did your pet go? ANy results yet? I don't know how my doc gets the results same day but I sure do appreciate it.
Thinking of all of you! It has been busy here and hard to keep up!
BK (changed my username for privacy and security reasons, I hope not to confuse anyone-kept the same profile pic and signature!)
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Good to hear from you Jenn! Just one tip on your DD's wedding..start saving $$$ now...but seriously..despite the expense..it is a wonderful time...have they set a date yet? I worry about my daughter getting married so soon...she will be just turned 23 when she gets married..just graduated from college...I want to ask her but I don't want to ask her if they are getting married early because of me...I certainly hope not..but the thought has crossed my mind...but then again ...it shouldn't be about ME should it? I guess it is ok but I worry about them...
Stupid boob...I think you asked about my son and his finger..re plastic surgery...I guess worse case scenario they would sew his finger to his stomach for 3 weeks so that the skin from his stomach will grow onto his finger..yeah..pretty wild huh...we are hoping that this will not happen...meanwhile he is just on band aids now and weaning himself off the percoset...going back to work on Monday...he also starts therapy in August..what a drawn out process...
Has anyone heard from MJB? It's not like her to be away this long.
And Stupid boob..you made it through the taxol..! Yay...and just 3 more to go...I had my chemo through the summer also..but it was a cold summer here...now this summer it is so dang hot...
My son made the comment that it didn't matter what the season was to me because I'm inside all the time anyway..(not true)...
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Hi Titan, No we haven't heard from MBJ and she has been on my mind a lot. I hope she writes soon and hope she is doing okay. Ever since she talked about Addison's disease she has not written anything since.
My son just got married on June 18 and the weird thing is that I feel they are now trying to quickly get pregnant just because of me. Just as you feel that they have set the date early just because of your situation. I would say that we have really caring children, although I wouldn't want to be the reason for them having a child so soon after marriage.
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Susan:
It's good to see you back here, and I thank you for your kindness. It's been really difficult living life with a child missing. My only consolation is that she is no longer suffering, which she certainly had been doing. She actually died of "failure to thrive" at the young age of 39 due to worsening digestive problems (no cancer - just about the only thing she did not have, thank God).
I also asked about you a few weeks back, so was greatly relieved to see you posting again and that all is well. My hair came back even finer than it was prior to chemo and not that it was ever really "thick," but was definitely thicker in the crown and bang area than it is now. I hate it - like you said - it's like baby hair. Guess this is it as I'm 2 years out of chemo so I can't really expect it to get "luxurious"! Your hair looks pretty in the picture, but I understand what you mean.
Linda
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Susan- my SE's are burning calves and neuropathy in my feet (if you can call it that...when I walk I feel like someone hammered the bottoms of my feet with a sledge hammer, breaking every bone) I would wiggle and squirm for up to 3 hours at night with my legs...saw a cardiologist and no problems there that would relate to my legs. The burning calves are much better with the Lyrica and my feet are slowly responding. But whoooo, the first 2 weeks of Lyrica are a trip!
I struggle with hairstyles too...mine came back the same...thick. Last night I thought it looked pretty good until someone remarked it looked like I had a hair cap on. Grrr. I really don't have a clue how to style this new hair length, which is one reason why I'm keeping it short-ha!
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Heidi- your cartoons always make me laugh out loud! Thanks!!
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I called my cancer center this morning, I wanted to talk to someone about the Cipro they've got me on as a precaution since my WBC are so low. It's nasty nasty stuff, I think I feel worse on the Cipro then I do on chemo!! I tried to have them page a dr but they only do that if its an emergency and I don't really think it is. So my question is should I stop taking it or maybe cut in half and only do 1/2 dose or SUFFER thru the whole dose? Any advice?
Thanks.
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Teka, just called them again, got a different person and he didn't ask if it was an emergency so he's having a dr call me back. I forgot that I had called them yesterday because I felt so bad before I learned of Cipro's side effect. Then after reading up on it the very nice nurse who called me back me insisted it was from the neulasta that I had on Monday but I've never had these side effects from the neulasta and it started as soon as I took the Cipro but she said it was neulasta and dismissed me. Now I'm really annoyed at her.
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mccrimmon - I think you might be having a confluence of symptoms, ugh. The Neulasta shot can cause delayed bone pain, skin "tenderness" (think DON'T TOUCH ME), and feeling flu-like, usually 2-3 days after the shot. Cipro can definitely upset your stomach - both nausea and diarrhea. And low WBCs can hit you like a mack truck, sapping your energy and making you feel like crap. I would not stop the Cipro before speaking with your doctor, but I would also keep pushing to talk with someone to get an answer about that. I'm sorry you are feeling so crappy!
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Thank you ladies,
A dr did call me back and told me that I can stop taking the Cipro since it was only precautionary and I'm not running a fever. I really had no idea that anti-biotics could make you feel so crappy, then after posting on here, googling and then my husband reminded me years ago he was on Cipro for about 2 weeks and was very sick from it so I knew it was most likely that. I'm in my third cycle of chemo and this the first time I've felt so bad for so long and I'm losing my "positive" attitude and starting to get pretty depressed.
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Hi ladies, hope everyone is enjoying their sat, my DH is throwing me a birthday party today, I think there are going to be about 30 people here for a bbq and some fun yikes hope DH is also doing the clean up lol. Its a perfect day here beautiful sunshine slight breeze. perfect day to enjoy my friends, feeling decent and living life.
Heidi that cartoon made me spit out my coffe loved it.
Hugs to you all
Kymn
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Happy Birthday Kimn
I hope its a fabulous party and you have a blast!For those getting Neulasta I found that taking a Claritin and a Zantac 1/2 hour before shot really took away the intense bone pain. My Onc pharmacist told me about it and who knows why? but it really works.
heidi- loved the cartoon! Thank-you.
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Great cartoon Heidi! Appropriate now that the corn is coming out :-).
Kymn - Happy Birthday!!!
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Bac- i get the results officially next Tueday but I don't think I can wait and will call my oncs office on Monday.
My pain is getting worse by the day. I feel so bad almost like I'm on AC but I haven't had chemo since last January. Two new tumors have shown up just since last Tuesday. Thats 7 new ones in one week. My chest hurts,my armpit area where the tumors are and my lower back and I'm getting sharp pains between my shoulder blades that wake me up through the night. It takes all I have to just walk through the garden I feel like I am exhausted. and I'm so scared.I keep hearing that doc telling me last October " One year at best" I sure hoped that they were wrong. I've been taking the pain pills but man they make me itch all through the night. how can this happen so quick? I've been working like crazy for months now. I'm just really, really scared. If I have one more person tell me to think positive I will scream. I'm facing reality folks! FC sucks. I remember when all of you helped me through my fear but this is so much more intense. I didn't feel this kind of pain before.
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Laurajane - I wish I had some words of wisdom for you, all I can do is say you are in my thoughts. I can imagine how scared you are. I know the unknown is the worst. Once you have the results of your scans, you will know where you stand and get started on treatment - you will be doing something, being proactive. And that at least helps with the fear a bit. Tomorrow, be sure to call your onc and get a script for Ativan or Xanax and don't be afraid to take it!! Please stay with us and keep us posted. Sending you hugs.
And can I just say how upset I am for you - first that the doctors told you a year tops, what, do they know something we don't??? - and secondly, that after your chemo your doctors let you go without closer monitoring. Ugh. Can't be changed, but I just wanted to let you know that my dander is up for you!
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Jenn - I keep forgetting to say congratulations on your daughter's engagement! How exciting! I'm sorry to hear the Gemzar/Carbo is so tough on you, but I'm glad it's working. Will your doctors go to a single agent once they consider you stable?
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Just posted this on the TN weight-loss thread, but too good not to share here:
!!!!!!!!! WARNING !!!!!!!!
I just discovered this important info below. Please share with all your friends.
I don't know WHY I didn't figure this out sooner!!!!!
It's the shampoo I use in the shower!
When I wash my hair, the shampoo runs down my whole body, and (duh!)
Printed very clearly on the shampoo label is this warning,
"FOR EXTRA VOLUME AND BODY."
No WONDER I have been gaining weight!!!
Well! I have gotten rid of that shampoo and I am going to start using Dawn dish soap instead.
Its label reads,
"DISSOLVES FAT THAT IS OTHERWISE DIFFICULT TO REMOVE."
Problem solved!
If I don't answer the phone . . . I'll be in the shower!
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LauraJane, oh baby girl. I'm so sorry. Dealing with facts will help you, and getting a treatment plan going. Keep posting here because we want to be with you.
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LRM216 and tnbcRuth, there should be seminars on what to do with post chemo hair. For a while I had a strange thick patch on top, now its just mostly baby hair all over, but still strange.
I wasn't posting for a while because I went on a long walk, the Camino de Santiago pilgrimage. My daughter and I walked 200 miles, and every day I gave thanks for the strength to walk, and for being alive. Up until 2 weeks before we left, I wasn't really sure I could make it, but I did.
Ruth, I'm so sorry you are having those nasty SE's and I hope the Lyrica continues to help you.
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LauraJane - I have no advice but wanted to tell you we are all thinking about you and hoping for the best. Good luck this week!
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Heidi,
I am so grateful for your humor. Thanks for brightening us all up - it really, really helps!
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mitymuffin, my cousin who lives in the north of France did that back in 1990. It took him 9 months there and back (he was enjoying the journey!) and he took his donkey with him to carry his tent and supplies, and had regular visits from family to resupply him. I was amazed that his job granted him a leave of absence - he was a fireman (now retired). The donkey lived another 15 years!
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Susan:
I am awestruck - totally. All I can say is Wow! That is truly amazing and I surely take my hat off to you.
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Laurajane... I'm praying for you
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mitymuffin,
You are TRULY mitymuffin! That is awesome and very, very inspiring to me. I want so badly to get back to physical activity but have had a little complication following my mastectomy.
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Laurajane, girl, I am so sorry you have pain. What are you taking for pain, anything? Does the Onc. know about the two new tumors and how do you know they are tumors? I wasn't aware, I might have missed the post in which you told us that the stupid doctor had said such a thing as "one year at best". What a big Jerk. Death and Birth is in the hands of our creater, not doctors. If there is something fun you can do tomorrow to take your mind off things, please do it, have fun, enjoy the weather. I know it is very difficult. All we humans can do, is do our very best and make sure no one around us makes stupid mistakes. See the best doctor, take the appropriate medicine and take the best care of yourself. The rest is not in our hands. The F....ck cancer is the plague of our times. It must be stopped. I am so very sorry, as you are a very young woman, this should not be happening to you. You are 6 years younger than I am, only 47, aren't you?
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Laurajane,
My thoughts and prayers are with you. I am so sorry you are going through this and I know you must be so scared, particularly not knowing what is going on. I hope you can find out something Monday. We are all here for you. As Lovelyface said, if there is something you can do tomorrow to enjoy, do it - just try to distract yourself to get through.
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