3+ Year Survivor Stories PLEASE!

carolinachick

Crs - I hope you have a good day today before the side effects hit.  I didn't wear ice mitts, but put my fingers in ice water baths during my Taxotere treatment.  It must have worked, because I didn't have any nail problems at all.  The allergic reaction to all four treatments was another matter, though...

The Derby sounds wonderful!  DH and I were invited to go one year but ended up having to turn it down because of a previous commitment.  I bet all the hats are amazing!

The vaccine trial has 17 women in it so far, and they aren't taking any more at this time.  I sure hope they find out some good news from it.

5andcounting

Pure, did it sound like a PARP inhibitor? My onc told me that was showing some real promise for the future but right now in order to be in a clinical trial you have to have metz.  They think in three years, it might be a new weapon for triple negs.

Yes, Violet, I think it will be your best summer ever!  It's never about how we look (ok, sometimes we feel better when we look better) but it's more about appreciating what we have. We all know that. 

angelsabove

Oh PURE.....thank ya girl....WE are all SISTERS.....we need to keep are eyes n ears open at all times.....WE ARE IN ALL THIS TOGETHER........like MEECE asked....do u have any idea what it is?????

5andcounting

Okay my taxol sisters, I start the new beast next chemo.  Are any of you taking 20mg of steroids the day before treatment? My onc says I take one at 9 p.m. and one at 3 a.m. and the nurses say I'll be up all night. It's supposed to help avoid any allergic reaction since Taxol is made from a yew tree. Right now, I take 4 mg steroid for three days following the chemo but that 20 mg dose sounds huge to me.

Sugar77

crs319 - I had to take 16mg of Dexemethsone for three days for Taxotere/Cytoxan.  I took 8mg morning and 8mg at dinner day before, day of chemo, and day after.  Yes, these high doses take their toll.  For the past two chemo rounds, I was tapered a bit to avoid the huge steroid crash. I finished my last chemo on Monday and finally got some sleep last night.  Good luck!

carolinachick

I had to take dexamethasone too.  I also ended up having to take steroids in my IV since I had a terrible allergic reaction to Taxotere during all four infusions.  It's supposed to be a great chemo drug, so I was glad that they were able to get it in me by dripping it very slowly. 

Sugar - Congrats on finishing chemo!  That's great news!

cheranthia

Hi crs319,

I was given Taxotere, Taxol's cousin. I asked the chemo nurse about the frozen mittens and she said, "We're kinda low-tech here. We just use ice water." They set me up with two small tubs - one for my fingers and one for my toes. I only had to keep them submerged during the infusion of T, not the pre-meds. I had 4 cycles of T and never had any trouble with neuropathy or my fingernails. I admit that it is not very pleasant, but I chose to put up with a little discomfort to avoid much worse SEs that can be permanent. Too me, it was well worth it.

Congratulations on finishing A/C! 

Meggy

Pure, I am very excited to hear what your oncologist said about some new drug.  Please let us know specifics.  Also post what he or she tells you in the thread called "Pinned thread About how to lower recurrance after chemo" so it can be added to our shopping list of what we can do.  (It's not actually a pinned thread...just wish it was.)

Thanks so much!

Meg

5andcounting

Violet-keep remembering my friend who had three positive nodes, she is eight years out now.  Don't focus on the nodes, it's different with everyone. I had a positive sentinel as well, our lymph nodes did their job.  The chemo(and I can't say the names now without gagging as well..lol...really..I gag when I try to say them) is doing its job, it just makes us so vunerable. Makes those cancer cells more vunerable.  Do you ever read Harry Potter books to your kids? If so, you may identify with this. Remember the "dementors"? The creatures that steal all hope and make you feel like just giving up.  Well, day 3-6 after treatment, the dementors visit me and I just loose all perspective. Just like in the book, only thing that keeps me going is thinking of powerful loving memories...well that and Xanax and Ambien. I try to knock myself out as much as possible during those days.

You're in my thoughts, message if you need anything. I've been looking for an excuse to get out of Kentucky as it's snowmeggedon here....

violet7

Crs, I know what you mean about the "dementors", although I have never been able to get through the Harry Potter books.  I love them, I just get distracted.  They are definitely there when you feel your worst, that's for sure.  When I'm called upon to name my drugs I take a deep breath and try to say them fast enough that I hope I don't hear myself saying them lol.  In the hospital they accessed my port to give me my antibiotics and the cold sensation of the meds going in was too like chemo and I was vomiting.  I made them put the IV in my hand; it was unbearable.  It's amazing how the body/mind connection works.  When I start thinking negatively I try to entertain myself with thoughts of how wonderful this summer will be.  I plan on the beach with the kids.  My landscaper friend is going to help out with making a veggie patch in my backyard for the kids to tend: fresh grilled veggies every night for dinner, loads of heirloom tomatoes and chilled gazpacho.  The pool at the YMCA, a yoga class.  I draw, but I don't paint and another couple of friends are going to teach me to paint.  Right after treatment, as soon as food rules again we are going in a group to this great Spanish restaurant I've yet to try, they have flamenco dancers.  I have things to do.  I wish I could get a doctor to give me Xanax.  It's unbelievable, but no one will.  The snow must be so beautiful, though.  I know it's not so much when you have to drive in it.  It's pretty warm here in CA the past couple of days - a mini-summer.  Please also feel free to message me as well if you ever need to talk.

Pure

Actually, I don't know. I need to ask that. Dr Lisa Cary who is here in NC at UNC is on eof the leading reasearchers on triple negs and I know they are closing in on treatments for triple negs that involve very little side effects.

angelsabove

Oh Pure.....keep us posted girlfriend.....THANKS A BUNCH....

Meggy

Please Pure keep us posted.....actually I don't mind too many side effects...just keep me alive dang it!

 Oh, can I add that I am getting married in 4 DAYS!!!!!!!!!!!    No boobs (well, a lamo expander on one side) and crappy hair (but a really sexy wig)....I'll post some picks!

5andcounting

Meggy - that is absolutely fabulous!!!!!!!!!!!!! Congratulations! I'm so happy you are living your life and that your spirit is alive and well! Some people live to 90 and never learn how to enjoy their life, you are savoring the good stuff. Maybe thats one of the few blessings this gives us.

I start Taxol today, very nervous about side effects but I agree, if it keeps me alive,bring it. 

carolinachick

crs319 - I hope your infusion goes well today.  Keep us posted.

Congrats to you, Meggy!  It sounds like you have a wonderful weekend in store.  We'll be waiting for photos!

Titan

Meggy..happy wedding day to you!  How fun!  Enjoy!   Can't wait to see those pics!

tibet

Meggy

congrates to your wedding. Did you meet your husband after dx and tx? Tells us about the romance.

I had prophilactic mast and reconstruction. The boobs look good, sexier than before, as my older breasts sagg down a bit and the new ones are firm and stand out.

Meece

Congrats, Meggy!  Enjoy every miniute of your big day.

I met DH after my 3rd chemo.  I had no hair, but a very convincing wig.  We dated for the next 15 months while I finished chemo and went through rads.  My hair was about 3-4" when we married.  We will celebrate our fifth anniversary this year.

violet7

Meggy, Congradulations!!!!  And I love that love story, Meece!

Anonymous

I had no nodes and clear margins but still had radiation. There are many women with TN mets who had clear margins and neg nodes. Radiation helps lower the chance of a local recurrence.

Also, Google "chemo blood brain barrier". It might help you to understand the physiology of chemo and brain mets.

angelsabove

OHHHHH......MEGGY,,,,,,,CONGRATS ON THE WEDDING DAY!!!!!!!!!!!!!!!!!

Meece

Meggy, hope you had a magical wedding day.  We look forward to pics.

Anonymous

Congratulations, Meggy!

Meece

Hope you are enjoying a nice honeymoon.  It would be a shame if you were hold-up in a hotel room because of the rain!

5andcounting

Meece - what a great story! I have continued to "date" during chemo and it's been interesting. I think theres a funny book in there somewhere.

Meggy - hope you are having a wonderful time!

Taxol really hurt me for two days but I feel great again now. Only three to go..I hope everyone is close to being done with chemo! I'm going to start shopping for my Derby hat. Port comes out April 28th so I will be port free for Derby and yes, despite knowing better, I am going to drink mint juleps and bloody Mary's all the live long day!

Meece

Worst part of dating during chemo, is I found that there are guys out there who just want the feather in their cap that they are dating someone with cancer.  I found someone who wasn't like that, I he was a keeper.

Anonymous

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Meece

Yeah, but you can tell if that is how they will be.  At least after a couple dates. I did date someone who had already lost a GF to cancer.  I really didn't want to be his second chance.

Even my mother and I had it out when she introduced me to friends as "My daughter, the one with cancer" one too many times.  After that I took myself to chemo.  She came around, but not after trying to make me feel guilty for calling her on it.

Titan

I love my mom but she still thinks my hair is too short..like I can do anything about it...oh well...my hair doesn't even look like "cancer cap" anymore..I look like a "normal" person..oh well...she did her best during my treatments and so forth....we really don't talk about it much....sorry to say

pas

  Ladies, be strong!  I am a 5 year Triple Negative Lady!!!    I can honestly say that when I was diagnosed and read all there was to read on the internet, I never dreamed I'd be here today and then my surgeon said to me "Stop reading all the articles on the internet, you never know what side of the statistics you will fall on" and I thought that was so true!  And he said "let's say your cancer comes back at one point, do you want to look back and say "I'm so glad I sat around and scared myself everyday reading the internet articles or do you want to say you had fun..."  That worked for me and I've looked forward ever since.  I am 47 with an 8 year old daughter.  I just am in the final stage of bilateral breast reconstruction (need nipple tattoo).  When I was diagnosed back in 2005, I was node negative, 2.1 centimeter triple negative and had a lumpectomy.  I had 8 rounds of chemo, 4 a/c and 4 xeloda plus taxotere.  I had 33 rounds of radiation.  Last year, I decided to have genetic testing because of my mom's family having history of many cancers (my mom passed in 1997 of breast cancer, not triple negative and bigger tumor at time of diagnosis).  I tested positive for the brca2 gene and so I decided to have the bilateral breast reconstruction with implants.  They look fabulous. LOL  Breast cancer has changed my life as I'm sure you all feel as well.  I chose to make this experience one that would teach me something about myself and I'm so thankful that I had to go through this, as strange as it sounds.  You all take care!  You are survivors!