Calling all TNs

ksmatthews

Hi ladies!  I have been away from the boards for awhile, just wanted to stop in and say hello and wish you all a very Happy New Year!

DorMac

Wow, I don't think I've ever seen this site go so quiet for so long. Guess everyone is recovering from the holidays, eh? Just hope everyone is dealing with tx and SEs well and that the new year brings good fortune to all!

Doreen 

liv-

hello,

think this might be a dumb question but im confused, doesnt take much these days!

im a ibc trip neg, if i have progression/mets, will the mets still be trip neg inflammatory, say i progress to liver or bones is that too trip neg inflammatory?

xx

5thSib

Hello everyone. I hope all had a wonderful holiday season. Unfortunately, all I could do was lay on the couch and watch everyone celebrate on TV New Year's Eve -- next year I will have to make up for it!

Liv-, I can't answer your specific question, but I do know that even if BC comes back in the breast, the next time it might not be TN, or a person who was not TN the first time might be on a recurrance, so all this is confusing -- a good question for your ONC.

I have a question for anyone who has gone through every 2 week AC and had a hard time with it, then went to weekly Taxol -- did you also have issues with Taxol? I go through 7-8 days of just feeling really sick then a few days of somewhat bad (mostly headache, dizziness and weakness), and just a 3-4 days of feeling ok before I have my next treatment. And I live for those few days. I can't image weekly treatments and am really getting worried about them. I have one more AC to do on Thursday (10th), then I think they will give me two weeks before starting the Taxol for 12 weeks.

Our insurance offers a free second opinion from Cleveland Clinic -- they gather all your records from everywhere and have one of their oncologists review them and then give you a written report on their findings and recommendations. They did recommend AC, followed by T, but they said they only do 4 rounds of the Taxol every 2 weeks (instead of the 12 weekly that my doctor is planning). I am going to discuss with him on Thursday, but wondered if anyone else had this particular treatment?

Hopex3

Liv: I have never heard of TN inflammatory. If it progresses or metastasizes to the liver, I believe it's called metastic liver cancer. Correct. Me anyone, please, if I am wrong.



5thsib: I just had 4 AC every two weeks and 4 Taxol every two weeks so I can't tell you how the every week taxol is. Usually, you don't tolerate one of the chemos's well and then the other, it seems as if you do better. I did ok with the AC but not with Taxol. That is interesting about your insurance and the second opinion. I would ask your MO why the 12 weekly taxol. Many people do the every week taxol..so it's not uncommon at all. But, I'm curious to see what he says. Sorry, I'm not much help. Take care!!

Kayak2

5th sib - I too had AC followed by 12 weeks of Taxol.  I had virtually NO side effects to Taxol.  With both regimens (4 or 12) you get the same overall dose, but when you do it over 12 weeks, your weekly dose is lower (since it is spread over 12 weeks instead of 4 treatments), so the likelihood of side effects are less.  Good luck.

LNBCA

Hello ladies, hope everyone is enjoying the new year so far. My mom wanted me to ask about losing eyelashes. Her eyelashes grew back after she finished treatment, but they are falling out again. Is there anything she can do for this, and is this common? Thank you!

melissa119

5thsib...

I had biweekly AC and the 12 weekly taxol. For the AC I actually felt pretty good. Maybe a day or two of fatigue and some about 2 days after tx. Then I did have some dizziness and lightheadedness on and off. I never had nausea and stayed on top of meds for that reason. So it was ok for me. For the weekly taxol I never even took the anti nausea meds which my mo said I wouldn't need. She was right. I felt pretty much normal thru taxol. My mo said that the weekly taxol is actually easier because the dose is smaller. She had found that it is much less se than 4 bi weekly. The only side effects I had from taxol were minor neuropathy at the last 4 treatments but it never lasted long. And my nails hurt during the last two and after I was done for about 4 weeks. Most of my nails lifted and I lost one but irbid already growing back. That was my biggest se from taxol. So it is in my experience much easier. Hope you do we'll with it too :-)

Melissa

placid44

5thSib,



I had the four cycles dose dense A/C (every 2 weeks) followed by 12 weeks weekly taxol. My 12th taxol is on Wednesday. I had a much easier time with taxol, compared with A/C, despite the weekly treatment.



My taxol treatments are on Wednesdays. My good days are sunday, Monday, and tuesday. I don't mind chemo day either. Thursday and friday I am tired, but nowhere near as sick or tired as on AC. I do find I am more emotional on those days. Saturday can go either way. The bad days aren't nearly as bad as AC.



I have neuropathy in feet. Hardest part during taxol was effects on hemoglobin (red blood cells). White blood cells were fine, but early on I was tired from having less oxygen in my blood. My hemoglobin counts have been coming up over the course of taxol. I'm not sure whether RBC were down from taxol or delayed effect from A/C.

gillyone

Hope - it is still breast cancer when it spreads to the liver or anywhere else. Metastatic breast cancer. Liver cancer would start in the liver.

LNBCA - yes this is common with eyelashes. Normally they fall out on a cycle to you don't notice. Now, they all grew back at the same time and so all fall out more or less at the same time. As time goes on things will return to normal.

LNBCA

Thank you Gill! I will let her know.

5thSib

Thanks everyone for sharing your experiences. I'm not dreading the Taxol treatments as much now.

Titan

fifthsib....I did ac and t dose dense...handled ac very well..for some reason I just freaked out about taxol....was nervous as heck...but it wasn't soo bad....took longer than ac...and they watch you for the first few minutes to be sure you aren't allergic to the drug...and they take your blood pressure alot also. 

I guess I freaked out because I KNEW what ac was like and the taxol was an unknown....but like ac ..once the first one is over you will be good to go cause you know what to expect....you don't have to worry about nausea with taxol...and your appetite comes back a bit...and so does your HAIR! 

Lauren15

Hi I'm new to this group.  I start chemo next week.  My understanding is it will be 4 rounds of AC every 3 weeks (I'm not sure DD, but I'd guess it is - I'll have to ask), and then either Taxol or Taxotere (is there a big differnce) every week for 6 weeks.  My doctor gave me a bunch of choices and said it's a crap shoot, and they all should work.  What am I in for?  I'm still waiting for the results of the BRCA test.  Thanks!  Lauren

Hopex3

Hi Lauren. Sorry you have to be here with us but you will get lots of support and advice here. I just finished my chemo. Had 4 of AC and 4 of Taxol, every other week. My tumor started out to be about 2 cm and now they can't even feel it so my doctors feel that the chemo really worked. I have surgery the end of this month. I didn't have any side effects with the AC other than fatigue but taxol, I did have some side effects. I got through it all and didn't miss a day of work except for infusion days. Good luck to you and keep us posted.

LuvRVing

Lauren - if you're having AC every three weeks, then it's not dose dense.  It would be the "normal" (haha) protocol.  Find the discussion here with women who are doing chemo in January so you'll have some company along  your way.  It's a good way to learn what to expect and share experiences and helpful hints.  Here's the link:

http://community.breastcancer.org/forum/69/topic/797712

Tracyc3771

Hi, Lauren15 and welcome. DD stands for dose dense and means you will get chemo every two weeks. I had DD A/C for 3 rounds and 6 DD taxols. A/C was a breeze but Taxol kicked my butt! It is my understanding that one of the chemistry will be rough and the other one easier. Just make sure you tell your MO what SEs ( MO is medical oncologist and SE is side effects) you are having. Good luck! Are you having surgery after chemo?

Lauren15

Yes, surgery after chemo.  Does anyone know the difference of taxol and taxotere?  I wonder why all the different protocols when we all have very similar cancers.

NavyMom

Lauren, you have asked the 64,000 dollar question regarding all the different protocols for chemo.  And there even more protocols when you start chatting with the gals all around the world. 

As far as the difference between Taxol and Taxotere.....I know that they are both taxanes and important for the treatment of BC.  I think that Taxotere was developed after taxol.  Please, please start writing down your questions for your MO.  The ladies here on BCO are very knowledgable but your MO should always your best source for info.

My Mo offered me two different chemo protocols.  So I asked her if I were her sister which would she chose and she picked TAC  (Taxotere, Adriamycin, Cytoxin) for 6 treatments every 3 weeks.

Welcome to all the new gals.  You will find comfort here.

I've not been posting much but reading almost everyday. Had a very difficult Christmas...First one being away from Navyson.  He is on deployment.

Trying to live each day as it comes.  And grateful for the joys in my life.

Hugs to all of you.

OBXK

Navymom- I can only imagine how much you miss your boy. Hugs

bak94

Happy New Year!!!!

Have any of you that finished chemo over a year ago have pain? It seems I was doing fine until I had my hysterectomy in October, I just don't know why I have so much pain. Is it from the hormone difference, or se's from chemo? I'm too scared to even mention the other possibilities! I have an appointment on the 14th.

EnglishRose75

Lauren, if you're doing a taxane every week, then my guess is it will be Taxol.  I haven't heard of anyone doing Taxotere every week (I think it's usually every 3 weeks) but I'm sure someone will correct me if I'm wrong.  From the chemo board that I am on, it seems that most people find Taxol every week slightly easier that Taxotere every three weeks, although there are exceptions of course.

Navy, a big hug to you.

OBXK, how are you doing?

Bak, I only just finished chemo in November, but I've started to get some weird side effects since finishing that I never had during treatment.  I have some numbness in two of my fingers in my non-cancer side but never experienced any neuropathy when I was on the Taxotere.  Occasionally I get some tightness in my chest and shoulders too, and am working hard to convince myself that it's stress/residual side effects from chemo and nothing more sinister.  If it persists or gets worse, I will get it checked.

I started rads last week.  Two down, eighteen to go...  All fairly straightforward so far.

And I went for red (and it was definitely a man who first said that vanity feels no pain!).

Where is CS?  Still caravaning?

Lauren15

Navymom - count your blessings that he is still around.   On Jan. 16th, it will be 3 years since my 20 year old son died.  I talked him out of enlisting in the marines years ago because I didn't want him to die; however, he died any way of an accidental drug overdose.  After that, chemo and BS is a picnic!!!  Enjoy and cherish every moment you spend and hear from him!!!    As for chemo, I re-read my notes, and it is definitely taxotere every week for 6 weeks after the 4 cycles of AC.  I still have to take the echo cardio test for the "A", and I'm not sure how it will come out and what will be the protocol if it doesn't come out ok; I have been feeling irregular heartbeats.  Did you take the TAC all at one time for 6 weeks?

Hopex3

Lauren...I'm so sorry about your son. It must be very difficult for you. I can't imagine what you are going through. I'm praying for you!!

I have an irregular heart beat as well. They did an echo and everything is fine. Mine only happens at night so I take an Ativan when needed and that seems to calm it down.



OBXK..I've been thinking of you and wondering where you are. Hope all is well!



Navy: Hugs to you!



EnglishRose: Glad your rads are going well so far....and glad you wore the red shoes!

jenjenl

Lauren15 - I am doing TAC every 21 days for 6 cycles (18 weeks total) - I get all three in one day's infusion. 

OBXK

Bak - Chemo left me with joint pain. My hips, most notably. I forget, and almost fall out of my SUV.

I had a scan to see if my gemzar/carbo is working last Wed. Still awaiting results. Onco has promised to email as soon as he knows. I have chemo Wed. - if all goes well with the scans.

Hope everyone has a good week ahead.

NavyMom

thanks to all for your support.  Fingers crossed for you, OBXK.

Oh dear sweet Lauren,   I am so sorry for the loss of your son. I understand your pain.  Our son was killed in a car accident 11 years ago. he was 20 yrs old at the time, too  We miss him everyday.  There are others on this thread who have lost their children, too.  We will be here to support you as you get through the BC journey.  I promise.

As far as your chemo question, I did TAC exactly like Jen jen explained it.  I got through it... Just seems like forever no matter what protocol you decide on.  But you will get through it.

Lauren15

Oh wow NavyMom - I love to hear from people that keep positive and keep moving forward after having such devastating curve balls that life throws at us.  There is nothing worse than losing a child, and I'm sure you know that BC is a hurdle we can handle!!!  I pray that your son who is currently in the service has a wonderful guardian angel who will bring him home to you.  This board is wonderful.  It's a group hug, which you can't get too much of!!!!  I'm going to ask my doctor why he's not putting them all together.

Titan

My son's best friend was horribly injured in a car accident 7 years ago and was in a coma for a month before they removed his life support...although he wasn't my child and I will not even attempt to know how it is to lose a child I certainly feel the pain.   A group of us go out for dinner once a month and this boy's name is often mentioned and talked about...I think it helps the mom and keeps the child close to all of us. It has been a long journey for the mom but she is doing the best she can...

Just sent my son back to school after Christmas break.not easy...I miss him already

Lauren15

It does help talking about him like he isn't really gone or forgotten about.  I even had his name tattooed on my wrist.  It keeps him close to me always!  Does this sound funny, but at the moment I'm not sure I'm in denial about the BC, but I'm so calm and going with the flow.  I think if I got a bad prognosis, it would shock me, because I'm really thinking of it like another hurdle to jump and no worse than having knee surgery and less than going deaf or blind.  I don't see it as a death sentence at all unless I'm being ignorant.  If I'm being ignorant, than ignorance is bliss!