Calling all TNs

Suze35

Thank you all for your kind words.



Angelisa, I do hope you are right. I try to remind myself of that when I get down.



I am not too nervous about the PET at this point. I wouldn't be surprised at any outcome. But if it is clear, I will be really hitting the exercise and diet hard. My doctor said that portion of the clinical trial arm was showing positive results, and it is something I can control over the next 7 weeks as I get rads and wait to start the trial possibly. My doctor also said we could replicate the Metformin trial if I want, she thinks it has promise. So, first step is PET, then I have some options.



I think what sits in the back of my mind is how my cancer didn't respond well to the chemo, and what that might mean for me if I go to Stage IV. But I know there are many to try, as long as my quality of life remains decent, I'll fight to the end.



I'll let you all know my PET results when I get them on Tuesday.

Titan

AND..just because a few of your lymph nodes were positive doesn't mean that it has spread...I dunno about alot of things Suze..no doctor at all..but do you have any symptoms of anything else? My onc always asks about shortness of breath, bone pain (rib/hip), headaches, vision problems, energy levels, appetite..all that kind of thing...

I've always wondered about that..can you go to stage 4 w/o any symptoms at all?  

Suze35

Titan - I'm not feeling anything major - no shortness of breath, liver pain, etc. I have some left thigh pain that is a bit odd, and I'm having some head issues, but the leg stuff could be chemo-related and I had a clear MRI 5 weeks ago. What concerns my doctor - and me of course - is that the cancer was in the tissue of my armpit, having left the nodes. And that it was growing during the end of chemo. I do think you can be Stage IV and not have symptoms...but you don't know to look until the symptoms show up.

But, until I know for sure, I am Stage IIIc, and I will fight like heck to stay clear! I'm hoping that anything that got out was vulnerable enough to the chemo before the crap in my breast started regrowing, and that I caught it locally in time. It's a bit of a crap shoot anyway. I'm preparing for the worst, and hoping for the best...which isn't the best coping strategy, but for now it is keeping me going.

jenn3

Suze, I am so sorry to hear the news.  Keep fighting!!!

TifJ

Suze35- My best wishes for a clear scan! You have shown such courage - fight, fight, fight!!!!

Teka

This is in the Sunday Paper.      ( I am a nice, financially secure single man in my 40s, and I would love to meet a nice woman.   You must not have an ex-husband in jail, no kids on drugs, have a job and weigh less than 250 and no smoking.   Am I asking too much? )      Any Takers?

TifJ

Sounds like an all-around nice guy---ooops...is my sarcasm showing??

Kymn

good morning ladies,

suze35 will be sending you all the positive energy I have left. i know you must be scared and angry. but the other ladies are right they are just numbers  are you going to do a different round of chemo??

I am gearing up for round number 2 on thursday I cant wait till I am saying round 6 and then done with chemo. trying to get all my housework and laundry caught up so I dont feel guilty on my couch days after chemo lol. oh also need to shovel lol 8 inches of snow overnight

hugs to you all

kymn

TexasKaren

The Xeloda and Gemzar didn't work well at all... only did 3 cycles and then quit.  I'm on Navelbine now, and it appears to be working.  I am scheduled for second opinion with Dr. Joyce O'Shaunghessey (one of the directors of this website!) at Baylor Samons Cancer Center in Dallas in a few weeks to see about getting on a new drug that doesn't even have a name yet... PEG-SN38.   I meet the criteria, so I'm hoping..... !

Enzon Opens A Phase 2 Study Of PEG-SN38 For Metastatic Breast Cancer

January 7, 2010

Enzon Pharmaceuticals, Inc. recently announced that the first patient has been treated in the Phase 2 studies of PEG-SN38 for metastatic breast cancer. PEG-SN38 or EZN-2208 is Enzon's PEGylated form of SN38, the active metabolite of the cancer drug Camptosar (irinotecan HCl injection). The study is designed to evaluate the efficacy of single-agent PEG-SN38 in two groups of patients who have received prior therapy regimens of anthracycline and taxane or anthracycline, taxane and Xeloda. The PEG-SN38 compound is currently being evaluated in a Phase 2 study for metastatic colorectal cancer.

"We continue to be encouraged by our PEG-SN38 compound and are pleased to be advancing it into additional areas of cancer," said Jeffrey H. Buchalter, Enzon's president and chief executive officer. "We look forward to providing updates on PEG-SN38 and the rest of our novel pipeline as data becomes available."

"Irinotecan is known to be active in metastatic breast cancer but toxicity has limited its broad use. We are very excited about evaluating the novel PEG-SN38 compound in hopes that it will exhibit an improved treatment for metastatic breast cancer patients," said Dr Joyce O'Shaughnessy, Baylor-Charles A. Sammons Cancer Center.

Teka

I am only TNBC.   You were diagnosed MTNBC?

MBJ

TexasKaren:  I am so glad this is working for you and I am also glad you came here to share it with us!

Suze35

Kymn - as long as my PET is clear, I'll be doing a clinical trial that will either be Avastin with metronomic chemo for 6 months, or exercise/diet. If I get the exercise/diet arm, my doctor said she'd be willing to replicate the Avastin/chemo, so she's going to push my insurance company again, and if that fails and my doctor TRULY thinks it will help me, my mom offered to cover the 7 doses of Avastin. Right now my doctor doesn't think adding more heavy chemo is the right thing to do - I've already had 4 biggies, and we know my cancer initially responded, but figured it out in the end. But she is still leaving it up to me and it is an option. Right now, we are just taking it one step at a time - I have to get rads done before anything anyway, so I have a bit of time.



TexasKaren - good luck with your consult, I hope you get in! I'm also glad to hear the Navelbine seems to be working on your mets.

Teka

TexasKaren,

I was thinking Metaplastic BC instead of Metastatic BC.   Reason for deleted post.

Titan

Good luck Texas Karen!  You know..all the talk about chemo and its se's...My father in law had lung cancer back in the 70's.  He took chemo...My DH said that he was on a trial drug...He really got sick from the chemo.he couldn't get off the sofa..My sister in law's mom had chemo in the 80's..she was bedridden for a week or two after each session...Chemo now certainly isn't EASY but for the most part..it is doable...back then it was so very hard on the patient.  When I had chemo everyone thought that I would be puking my guts out for 6 months...NOT....sure if affected me but I still had life....I think sometimes people were amazed that I was actually working and talking and doing things...

Hey Teka..did you apply for the "girlfriend" position?  HA HA..

TexasKaren

I agree totally!  We are so fortunate (to be the UNfortunate ones with this stuff!) to be living NOW, when treatments are so much easier.  They're not FUN at all, but we don't spend days hanging over the toilet or bedridden.  They have improved the steriods and the anti-nausea meds, and the dosages for the chemos have become more targeted; did you know that in the 70's, almost everyone on Adriamycin got almost 3 x what we get today?!?!  They hadn't figured out yet that a lower dose was just as effective.  Thank God for research, and for those who continue to support it!!  There are new drugs out there all the time, and one of these days, this terrible beast will be tamed forever!

TexasKaren

By the way, I still keep in touch with my original group, October 2007 Chemo Girls, and they are so supportive of me now.  I'm the first (and pray God the ONLY) one with recurrence/mets.  I couldn't do without them; but, it is great to find this forum with ladies who are going down the same path I'm on also..... I am adding all of you to my prayer list immediately! 

Teka:  the ad was funny, but I already have the dream hubby; but I might have a few desperate friends out here in lonely west Texas to pass that on to!  LOL

jenn3

TexasKaren - I think I'm the first in my chemo group (Aug 09) with mets too.  They too have been very supportive and funny.  I wouldn't wish this on my worst enemy (if I had one).  I hope and pray that all I (we) have gone through and are going through will be the building blocks to helping people years from now.  I did a trial the first round with chemo, but opted out this for now.  Although, I have been thinking more and more about the trials I was offered, the aggressivness of this beast and wondering if I should go ahead and do one of the trials........I'm rambling again.

Titan - THANK YOU for your support on my other thead over in Stage IV, where I talked about my meltdown.  My pain is getting under control with the 12 hour meds, combined with the percocet for break through pain.  It is so, so much better than it was just 5 days ago. 

I hope that everyone had a wonderful weekend.

Teka

Titan,

Don't tempt me.

kelben

I'm thinking positive thoughts for you Suz, Texas and Jenn and for all of us.... BTW, I could use a nice guy,  and I don't smoke....

Fighter_34

I only have this it add. They are now taking your 'saved' tumor and testing it w/ different types of chemo to see which one responds better. Please follow up w/ your doctor about this. As you know, our tumors are saved for research.

About the exercise thing I have read where many ladies have pushed themselves into remission w/ exercise and diet.

Hang in there girlie! ((((HUGS)))))

Titan

Ok..Fighter..so my tumor was saved for research..that's fine..I think mine is in New Jersey somewhere. thought I'm not sure why it is there...I would like to have it back so I could jump on it, cut it into million pieces and put it down my garbage disposal...oh..and have my cats throw up on it.

Anonymous

Titan- sounds like a plan!

Teka

Fighter_34,

I don't know if they saved my tumor, but never gave written permission for research in Clinical Trial E5103, which would have nothing to do with chemo.

certified

IBernieEllen

'm also Bipolar 2 and have not had any manic episodes during treatment.  Just kind of shut down and went with the flow. Perhaps your onc dr was thinking about the steroids.  I had DD A/C x 4 and half way thru 12 weeks of Taxol.  Stay on all your meds, up the frequency of your psych visits and be sure the pdoc knows about your bc.  This is a very high stress time in your life.  Take care of yourself

MBJ

Titan:  Lol, I actually pictured you doing that!  Works for me.

NavyMom

Saw my Onc today.  Yesterdays PET scan was good.  Even the Lynph node that has been a bit of a worry is GONE!  I go back in 6 mo.  No scans unless something is bothering me.  I will be having a drink with dinner tonight(Drs orders)  

Navy

christina1961

Hi everyone!  I am 50 years old, diagnosed in 2/2011 with 2.5 cm triple negative breast cancer (although 5% ER+) - MRI & ultrasound did not show any lymph involvement but radiologist thought two nodes looked a little enlarged (maybe from biopsy?) but during the 3 week waiting period in which my tumor went through a growth cycle and increased a bit in size, one of the nodes became palpable and hard - about 1 cm.  I got started on neoadjuvant ECT (Adriamycin shortage here!) a few days later and have had 2 cycles so far. Tumor has shrunk - can't really say how much but clinical exam by oncologist after round one estimated it had gone from 2.6 x 2 to 2.1 x 1.5.  It seems slightly smaller this last time but not as much as I'd like.  I have pain in the tumor site and under my arm which I certainly hope is inflammation from the tumor dying!  (I asked oncologist 2 weeks ago- - he thought node felt better - and the pain was from amino acids causing inflammation - of course, I'm worried about it all over again anyway!  So that is my story - there are a lot of very encouraging profiles on here!!

Titan

Hi Christina..glad to hear the chemo is working for you!  That is good, good news!  Oh yes..we all freak about things..but this is a good place to do so...we are with you and know what you are going through!

Hey MGB..been hearing some things about Lysine...what do you know about it?

Suze35

Christina - welcome, although I am sorry you are here. 

Got mixed news on the PET scan.  Good news - no evidence of metastatic disease.  YAY.  My doctor admitted she had been concerned about it, given how aggressive my tumors were.  Bad news - the PET showed what appear to be three small nodes in the axilla still positive.  It could be surgical changes, or it could be nodes the surgeon missed.  I am going to have an ultrasound-guided biopsy on Thursday to see if we can confirm what is going on.

My doctor thinks that they were missed in the surgery - it happens.  She is going to see if my BS wants to go back in and remove them.  But she did say radiation would take care of them - they are small and not very dense.  Given the recent studies on ALND, I'm inclined to not have more surgery and hit them with rads.

I'll do another PET in 3 months to confirm that they are gone.  My doctor is now firmly in the more chemo camp - she said if I don't get the Avastin/chemo arm, she wants me to pull out and we'll come up with a game plan.

I'm relieved, but annoyed - not at anyone in particular, just at this disease.  It always seems to be one more thing for me...my doctor is still hopeful, she keeps reminding me that she has patients who are fine and were in my shoes...

Sigh.  Think I'm going to have some red wine tonight.   Off to my vegetarian chili!

lrr4993

Suze - GREAT news on the pet scan!!!  (at least the part about no distant spread)