Triple Negative Stage IV

Anonymous

Hi Brenda, thanks for the welcome. Yes they biopsied the liver and it came back all TNBC. Creepy bastard it is. I had been complaining for a few months that my side hurt (r). My primary and the surgeon that was going to do my colonoscopy suggested gallbladder. HA - 6 month follow-up after a mammo (which showed nothing in that left breast) I asked my radiation onco about the pain and told her I was worried- BAM she got me in for a CT (last CT of my liver was 6 months ago). Low and behold spots. So my mammo did not show, my last CT showed nothing, even my liver numbers were perfect. the pain is what got me diagnosed. I am a firm believer of "listen to your body" scans and tests don't always show what's going on.

lostinmo

Starting Doxil next Tues. Any info would be appreciated. 

Anonymous

Lory, you had pain for a few months?  I thought that 2 weeks was the limit.  If something hurt and did not go away in 2 weeks it had to be investigated!!!  Maybe you need to go to another oncologist.

Hi lostinmo,

I heard from a friend that Doxil does not make your hair fall and that the side effects are tolerable.  Good luck!

Hugs to everyone!

Brenda

MothersDaughterTNBC

My mom just finished Doxil. She started with 5 liver mets the size of a quarter and her last scan showed only one liver met. The breast started out 5x5cm and it got down to 1.5 x1.5cm.  It has been stable since. Her lymph nodes grew by a good bit and now they're 1.9x1.9cm. 

As far as side effects, she had mouth sores after each round. She didn't really have a whole lot of hand foot syndrome but she kept lotion on a lot. After the third round, she had a bad skin reaction so they delayed and reduced the dosage. The last round was really easy for her. I guess the delay and reduced dosage worked really well for the side effects. 

Hope Doxil is very effective for you! My mom is moving on to a clinical trial. I'm not sure which one but hopefully it works as well. I think one is ENMD-2076. Anyone in a clinical trial? I like the veliparib and carbo trials but I'm not sure what the oncologist will suggest.

MothersDaughterTNBC

Oh yeah..my mom didn't have a lot of hair because of AC but after the first round of doxil,  she lost her eyebrows and eyelashes. They started growing back really fast after the first round though. 

lostinmo

Thanks for the heads up. They had told me most of that but they also told me Taxol would be easier that a/c. NOT Better to hear from some that actually know.

marywh

Well has not been a good 2 weeks. Platelets were too low to continue chemo, so I had a 2 week break I didn't want. I take it in pill form twice a day, so that's a lot of chemo to make up! Should be able to start back on it today after I see my mo. Going bald again for the fourth time too. It just doesn't ever end....

Anonymous

Brenda, they did blood work and a CT of the liver, nothing was noted other than fatty liver. I am overweight so that was the "diagnosis". My 2 onco's were so perplexed with the cancer diagnosis so soon after clear scans. I am hoping tomorrows PET scan results show something good.

Anonymous

Mother's Daughter:  Wow, your mom responded very well to Doxil.  That's always encouraging to hear!

Mary:  Sorry you had to take an unwanted break.  What pill have you been taking and when is your next scheduled scan?  Sorry about the hair.  I have learned to live with less hair.  I used to have the thickest, waviest hair.  I spent so much time straightening it so it would look less full.  I grieved after Taxotere and a few months of Arimidex.  Those 2 things, for some reason, did a job on my follicles. After Gemzar I probably only have 1,000 strands left.  I don't know what Femara will do to these strands, though.

Lory:  When you had your scan and your doctor said it was clear besides the fatty liver, should you have had an MRI of your liver?  It seems to me your team should have investigated your pain further.  Anyway, I hope you have a treatment plan that is manageable.  What are your next steps?

Hugs, hugs, hugs,

Brenda

Anonymous

PET scan showed dramatic reduction of spots in my liver and the spot on the pancreas is gone. uptake is minimal now, with nothing in the nodes noted from before. Onco said 1 extra week off chemo due to WBC -then continue with this chemo to it's max "6" if possible, I have had 3. We will then re-scan and discuss a less harsh chemo to begin as a maintenance plan. I am happy with what is happening thus far.

Anonymous

Lory, your chemo is working.  That's great news!!!  You could have NED by the end of the 6th cycle.  How's the pain?

Hugs,

Brenda

lostinmo

Lory, great news on the chemo. Cheering NED, NED, NED come on NED.

marywh

Im on VP-16, 21 days on (or supposed to be) 7 off.

Anonymous

Thank you all for the NED cheers! The pain in my side comes and goes. After speaking with the onco yesterday about that side pain, he said that he believes it IS the gallbladder because of the tracking I have of food vs symptoms. I trust him 100%  I am finding spicy, or fatty foods bring on the ache. Gonna miss those enchiladas! LOL  Now is I can find the energy needed to get some treadmill time in.

Anonymous

Mary, what is VP-16? Is it harsh?

marywh

VP-16 is Etoposide. I havnt been on it long, but se are not too bad. My worst problem was getting thrush in my mouth which was really painful for a few days and loss of appetite, but no nausea, I just am not hungry. Its hard on your blood counts too. I had to take a 2 week break after being on for 2 weeks, and counts are just getting back to normal. Hopefully will start back Monday.

Carolben

hi Mary, been thinking of you. How are those chest sores going - you said they'd been an indication of chemo working before? Hope your blood count goes up enough to carry on. Who'd have thought we'd be asking for chemo, what did you call it Brenda? Chemo Sluts?!

Sad to loose your hair, but I hope the Etoposide works! I empathize with the thrush, had it twice now. They put me on an oral antibiotic, Nystatin, which seems to help. Ditto on the lack of appetite, I'd live on mangoes if I could, and frozen yoghurt or gelato. I get intense nausea with vomiting sometimes, but otherwise it's managed with anti nausea drugs.          

I have so many drugs, creams, meds for everything - I could open my own pharmacy! Oh so this us all part of this new life.

Another angel from our town this week, that's 3 in a month, just got so sad, for her, her family, for me & my family, for all the amazing women this horrible disease has taken, sad for all of us, fighting the fight. Just cried & cried, was very cathartic, it's got to come out. 

Today the sun is shining, I'm alive & can go to the beach and meet up with friends, & consider myself so lucky to be able to do these things.  There is an element of why not me? I'm older, have had a crazy and full life; why take those with young children, it's just not right, so there's a kind of guilt - survivors guilt? Anyone else feel this way? Also of course there is the thought of "this is what's waiting for me down the line?" Maybe I need to talk to a therapist, all these mixed emotions...

Loveforlife

Carolben,

So sorry for the loss of your friend. I highly recommend finding a good therapist. It does help to talk these things out in person. I have a great one and she has enhanced my life (even before I was diagnosed with cancer.) I wish you many days in the sun - at the beach - you so deserve it all. It is hard to see the super young ones with kids go. I'm 48 and consider myself young, but I have lived an incredible life and I have no children. I can't imagine the pain it must cause the women with small children to know they are leaving them behind...

Laura

Kimmie0247

Ladies this is off topic , but I need incite.  My son signed me and his friends up for Susan G Komen's Bowling for a Cure.  Omg these women are c depressing and nuts! I was asked if I was a Survivor- I replied no- my oncologist says I'm a Fighter I really like that he says I'm a fighter.  Survivors to me are NED. 

Needless to say I was bombarded my women who wanted to know who my OC was and give me and him a piece of their mind. My son said it was like I started WW3. I even refused to be on tv because they made such a big deal. I try and have a good attitude and be smiling and cheerful.  I also try and not think about the time I have left and just do what I want and spend time with my son...The son who says he will NEVER sign us up for anything Susan G Komen again.

To make matters worse it was the 1 year anniversary of my aunt passing away from bc. She had a metastic recurrence at age 91. She told me at her age she was too old to fight like she did at 70. She was a Survivor for 19 years.....

alilou7497

Just wanted to let everyone know that alilou7497 (my sister, Liana) unfortunately lost her battle with  this horrible disease called cancer on January 12, 2014.  We were all with her including her son at the hospital when she passed.  After her WBRT (10/24/13) everything went downhill.  So many complications beginning with seizures and ended with septic shock.  Thank you all for being there for her. 

marywh

O God, I am so sorry to hear of your sister, Wish I had some great words of wisdom for you. You are in my thoughts and prayers...She was a nice lady.

Anonymous

Another sister with TNBC is gone.  I am so angry at this disease!!!

Loveforlife

So very sorry to hear about Liana... So f---ing sick of TNBC... 

Carolben

ditto to all, f$%k cancer - it's so sad to hear of more angels, so sorry about Laura, and thank you so much for letting us know! hugs

CatWhispurrer

How is everyone doing on here?  I see the last post was last month.   Unfortunately, I have to join the group.  Was diagnosed today with mets to lungs, mediastinum, and supraclavicle.   Starting a trial with abraxane and another drug or placebo.   I am so interested in how the various treatments are working for you.

lostinmo

I'm here. I've had 2 rounds of doxil and the tumor on my back shrank after round one. But port complications landed me in the hospital at the beginning of the month. Hopefully back on track now.

CatWhispurrer

Hi Lostinmo!  Thanks for replying.   What port complications did you have?   I am struggling with the thought of another port also as I got a pneumothorax (collapsed lung) the first time.  I am very tiny so have very tiny veins in my hand/arm and it is hard for them to find a good vein.   I am so dreading going through chemo again!

lostinmo

Hi Catwhispurrer.

It was kind of a mess. I ended up in the hospital with a blood clot, port not working and one of my tumors narrowing the vein into the heart.  So they took the port out, a stent in and a picc line. But I got out in time for chemo #2.

CatWhispurrer

Lost - Wow, glad you got all that straightened out.   How do you like the picc line?

I am second guessing the clinical trial.   I read the 21 pages yesterday and it freaks me out that it will take up to 3 weeks to get into treatment.   I see the nodes on the side of my neck getting bigger and starting to get twinges of pain in my side (I guess that is probably my lungs).   I HATE this waiting game and want to start something NOW!    I just don't think doctors "get it" when this stuff spreads so fast.

lostinmo

Cat- I guess the picc line is better than nothing but it is a pain to have to mess with it. It has to be flushed everyday and kept dry at all times. I would so rather have a port.

Three weeks seems like forever at the beginning but it's really not. My tumor on my arm was removed mid December and I didn't start any treatment until Feb 11. Now that I think about it exactly 2 months.  It took that long to get scans and everything set up.

Sadly I get the impression that once you get to stage iv it's not longer hurry and conquer, but more about containment.