Tripneg Success Story

nosurrender · August 2007

Girls, I just had to share this.
Yesterday I was in chemo with a girl who was dx'd with tripneg BC that had already spread to several areas of her lungs. So she had mets from the get go. There were also several IDC tumors in both her breasts.
When you are tripneg with a dx like that it sounds about as bad as it can get doesn't it?
First they gave her Taxol. It did nothing. In fact, she grew more lung tumors.
She switched to my onc and he started her on Cisplatin.
After six cycles of it they gave her a break so she could get a bilateral. The path on her breast showed NO TUMORS.
Then she was scanned. NED. EVERYWHERE.
The cisplatin eradicated all of her tripneg cancer.

She is now taking a step down regimine of carboplatin to keep herself stable. She also is taking Zometa as a PREVENTATIVE for bone mets.

If the cancer should pop up again she will go back to the cisplatin.

I just wanted you to know, if you are on another tx and it isn't giving you the results you want- ASK FOR CISPLATIN. My onc called the guy heading up the study on it at Dana Farber to get the right doses, etc.

I am telling you girls- WE ARE GETTING THERE!!
Love,
g

shokk · August 2007

Gina thank you thank you thank you......I have been having a bad couple of days.......hate being triplenegative with no safety nets.......you just made my day......love you....

nosurrender · August 2007

Shokk, remember- come Sept 6 I will be SIX YEARS OUT of my tripneg dx and it was NOT the cancer that came back. I have ER+ lobular now. So I have been NED for Tripneg for six years.
IT CAN BE BEATEN!

myrenewal · August 2007

Gina - can you tell me what a step-down regimen of Carboplatin is? My chemo protocol included Carboplatin with Taxol (yes, I am triple negative) because my doctor felt Carboplatin was helpful for us. But I did not have Cisplatin - what is the difference? I believe they are closely related - any insight into this?

Bimmer · August 2007

My wife's story is very similar. She had very advanced disease with bone mets on her right femur, five 4cm mets on liver, mets on lungs and lymph node chain in her chest. She also had 3 large clusters of cancerous nodes on her neck.
After 1 dose of carboplatin she started improving, after 12 doses she has no detectable disease. Carboplatin as well as cisplatin allows triple negs to live on borrowed time.
If you've tried other chemos without good results, it may be time for a platnum based drug...
My wife was near death on April 1st. Now she's at home watersealing the sundeck and cleaning the hottub....

boobbuster · August 2007

Gina-
I achieved NED with Carboplatin also. There is hope. God is able, Stephanie

Indigoblue · August 2007

Always, Gina, Thank you for valued information and keeping us updated. You are the best!

Carboplatin, seems to be the "new best" chemo going. Was reading about Adriamycin and Cytoxin may be replaced as the first line meds with Cisplatin and Paciltaxol. Also read that receiving chemo before surgery and rads is being researched as the most effective treatment in preventing recurrance. Lots of exciting knowledge for the trip negs!

Thanks again!

You always throw in a lifesaver when I am just about to go under the waters of self doubt and self pity. Hope; a glorious word.

Bimmer, so good to hear your wife is doing better!

Be well,

Indi

jdash · August 2007

gina
that is fantastic news for us triple negs ! thanks so much for sharing it
I hope you are feeing well
lots of love
julia

nosurrender · August 2007

Sue, the "step-down" is that she is in maintenance to remain

Steph, I am so grateful to this medical breakthrough that has worked for you. I think of you often and pray for both you and your dad.

Bimmer I am so happy to hear about your wife. Water sealing the deck? That is so great!

NED. Apparently you can do lower doses with Carboplatin for that after you have finished your course of Cisplatin. And people do stronger doses of Carboplatin as their first line tx as well. They are both platinum based drugs.

Blue, I am so glad this news helped you. Believe me! When this woman was telling me about her story I kept thinking of my tripneg sisters here!

Julia, I am hanging in there- It is SO GOOD to hear from you!!

Love,
g

slanderson · August 2007

Yes, thank you, No Surrender,

It is pretty seldom that I read anything totally positive like this. It really is a good feeling.

Shannon

jan125 · August 2007

Thanks for the story. I am not triple negative. I am er/pr+ and her-2+++. (which is a mixed blessing I guess??).
However at age 29 I has an initial dx of mets to the bone, liver, and I am not sure what was decided about the spot on the lung.

I did carboplatin and taxol along with herceptin and they can't find anything!!!!

And the comment about living on borrowed time; we ALL live on that. Just because we have/do not have cancer doesn't give us any extra knowledge as to how long we all have.

Just enjoy it. I hope the deck comes out well

Love, Jan

zarowny9 · August 2007

Thanks for the post gina and all.Iam having a very hard time with tx and I may need a new chemo,the onc suggested navalbine but Iam now thinking about the cisplat and carbo. Gina I dont post often but I follow your blog and you make me feel better, I dont even have the words to explain... thank you.....Dawn

jdash · August 2007

dawn i have been thinking of you BIG HUGS : ) i read gina's blog also gina you are an amazing writer!!
jan that is so wonderful i am thrilled for you!
i had nodes positive on both sides and had ACT before my surgery pathology report after chemo and surgery was no sign of any cancer cells in my breast or nodes i guess that chemo does work : )))

snicklefritz · August 2007

Three cheers for the Cisplatin!! That is an awesome story. Gives us all hope. Mary Jane

jeanne46 · August 2007

Thanks for the info. I am new to chat rooms, but not cancer. Am also trip neg and am considering a phase I/II trial after having failed on xeloda, avastin and abraxane. I think my next chemo regimen will be cisplatin and gemsar. The trial is called the ONTAK trial and is being conducted in CA and
Washington.
BTW - what are the usual side effect of the cis/gem? Is hair loss one?

nosurrender · August 2007

Good luck with the trial!
I think someone who has been on Cisplatin will chime in here with their experiences... I THINK hair loss is one, but I am not certain.
GOOD LUCK!!!

Lisa40 · August 2007

Jeanne, I'm not on a trial but am doing cisplatin and navelbine. It is hard on me. Until just recently they were giving me the same dose two weeks on one week off. This created my blood counts to drop drastically. I had to have two platelet transfusions and one blood. I'm now doing the same dose as the one dose every three weeks. At first I could really tell a difference energy wise. Now that it is almost time for chemo again I'm tired and feel like I get winded up the stairs.

The only side effects I've had is a little nausea, fatigue, and hair loss. It really is do able once they get the right dose down. Hope all is well and this combo works great for you. Lisa

Lisa40 · August 2007

Gina, how are you? I've been around here and there but primarily having house company and getting everyone ready for school. It is so nice to have friends visit but I'm exhausted. I'm actually a little frightened because all I want to do is sleep. I'm late on scans by about 6 weeks and am finally ready to accept what every comes my way....including NED How are you doing. The finish line must be coming soon. Have you been feeling ok? I might not talk to you daily but I think of you daily and how you have helped me through so much. Take care and if you ever need to talk call. Lisa

Indigoblue · September 2007

No comment

However, I am compelled to speak these thoughts:
Infuriared, annoyed and helpless while this stupid, selfish and obnoxious disease invades woman,
life giving, imagages creating time,life, beautiful life,
and all that is to be, delivered with love, hopefully. There are no good thoughts...
Cancer Sucks flipping dead porposes without porpise, purple pr purposel

in not knowing who i am anymore, feeling sick and tired of this bull,

Indi

lisacatq · September 2007

I too am having success. I posted this in another forum and thought I would copy it here.

I havent been around for a while. After my great scan results in March I have been getting on with my life, had a holiday away, bought a new house and have been having fun.
Went for my 3 month scan in July and what do you know it is all back in and around my lungs again and I am back where I started. I was quite shocked as I thought I would have more than only 3 months off chemo. My onc said I could start another treatment now or wait until I start having symptoms but I decided I was ready for another treatment and didnt want to wait until everything was worse and harder to treat.
So, I started Cisplatin and Navelbine in July, weekly for 2 weeks and then 2 weeks off. I have had 2 cycles and had a scan on Friday which showed "ALMOST COMPLETE RESOLUTION of multiple pulmonary metastases....." Fantastic news isnt it. This is such a rollercoaster and it is amazing how quickly we learn to roll with it all. I didnt dare hope I would have such an outstanding result after just 2 cycles. I already have learnt not to hope when I have a scan, nor to worry it will be bad news. But when you receive the good news you realise even if you dont admit it to yourself you are worrying.

May my news give hope to some of you. Take care all.
Lisa from Aussie.

nosurrender · September 2007

((Lisa)) Hey girl!
I got a little delayed, so my chemo won't end til November. I had some complications from the ruptured tissue expander surgery.

NED IS WAITING FOR YOU!! I JUST KNOW IT!

You are always in my prayers, my friend.

((Indi))
Yep. Damn skippy. All of those things. I am sending you a huge cyber hug.

((Lisa from Aussie))

YIPPEE YAY HOORAY WAY TO GO GIRL!!!!!
I am SO happy for you!!!!

Love you girls,
g

Tripneg Success Story

Comments

Categories