Calling all TNs

tnbcRuth

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! 

tnbcRuth

Heidi- your cartoons always make me laugh out loud!  Thanks!!

Teka

Hi Everyone,

Enjoy last July weekend!

mccrimmon324

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.

Teka

mccrimmon324,

Talk to doctor.

mccrimmon324

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.

Suze35

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!

Teka

mccrimmon324,

I always talk to a doctor.   I'll not be given the bum's rush.

mccrimmon324

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.

Teka

mccrimmon324,

Hard to have "positive" attitude when feeling crappy.   I am pleased a doctor called and OK'ed not taking Cipro.

Kymn

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

Teka

Kymn,

 Birthday Girl do you also get to celebrate tomorrow?

laurajane

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.  

Suze35

Great cartoon Heidi!  Appropriate now that the corn is coming out :-).

Kymn - Happy Birthday!!!

laurajane

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.

Teka

laurajane,

We're here for you, and definitely call the doctor on Monday.

Suze35

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! 

Suze35

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?

Anonymous

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!
 

mitymuffin

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.

mitymuffin

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. 

lrr4993

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!

christina1961

Heidi,

I am so grateful for your humor.  Thanks for brightening us all up - it really, really helps!

riley702

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!

LRM216

Susan:

I am awestruck - totally.  All I can say is Wow!  That is truly amazing and I surely take my hat off to you. 

cc4npg

Laurajane... I'm praying for you

christina1961

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.

Lovelyface

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?

christina1961

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. 

Lovelyface

Ladies, I want to ask everyone whether any of you feel the way I do.  Before I ever got diagnosed, I used to feel this weird sickness, which is as if there is a sort of looseness in my body, both my arms would sort of lose power, and I could feel a general sense of weakness in my pelvic area.  After doing like 20 blood tests for everything from A - Z, including all vitamins, allergies, heavy metals, neurological testings, my neurologist confirmed that there were no negative findings.  The one thing that they did find was that I had a very very mild sleep apnea (my numbers were really low though).  I used the sleep apnea machine for several months after that, but did not feel much difference in how I felt.  Then I got diagnosed with BC and during chemo and several months after that, I did not get this feeling.  At that time, before BC, I had determined with the help of my gastro doctor that it seemed like I had very low estrogen levels which was the only thing out of range on my blood tests.

Well, now after all my treatments finished (by the way, I felt great during and after my treatment), they gave me Aridimex (anti-hormone), and this medicine has made my estrogen levels even lower than ever.  I have begun to get those weakness feelings again.  Both my arms seems to be getting paralyzed all day long.  When I eat high fat food such as milk shake, sugar, etc., then I feel okay for a few hours.  If I eat low fat, I feel even sicker.  I feel that my body is not making estrogen, or making any hormones, which is probably how I got BC in the first place.

My theory is that women with low hormones get TN, and women with too much ER, get other positive types BC.  I honestly believe this is what happens.  For some reason TN's are not able to make estrogen as they get near menupause or get past it.

Anyone feels like me?  If you do, how do you describe this feeling to doctors?  I used to tell them that I feel paralyzed, that's when they check me neurologically.  Oh God, what is happening to our environment, our bodies.  I think that since our estrogen is so low, the bad estrogen which mimicks estrogen in the environment attacks our bodies and causes BC.  Anyone have any similar theories.