Calling on all triple negatives w/ local recurrence

Ladies, would like your cumaltive wisdom. I've finished chemo. Now onc says we can try several things. I'm NED but I want veto take metformin and go a clinical trial for vaccine st Washington St. Louis. He's fine w those. He also said I could do tamoxifen as I am 1-4 percent positive according to one lab and 0 percent according to another. I don't like the se of tamoxifen if it may not even help.

Xeloda was mentioned too though he wasn't very keen on it. It's been shown to show a little promise I'm keeping recurrence down w triple negative. Any insights you have greatly appreciated.

Winnieg- my recurrence was local and was totally removed by surgery. Even if it recurs(which it may not!), it can still be curable w local recurrence. Get checked. The faster you know, the faster you can intervene. Prayers for u

Hi ladies went for MRI and ITS back am booked for craniotomy on Thursday good news is it is superficial but am so scared will be in ICU for 3days and then normal wards for 10 days then transferred to another town for radiation will be away from home for about a month It feels like forever and I haven't left yet! So many things to organise.Thought I would have hair for Xmas It seems like Oct is not my month. It is exactly 1 yr since I had my mastectomy but I am not giving up what doesn't kill you makes you stronger! I really think that I am a better person for all that I have been thru. Anyone had similar op? I think that I am rambling but am in such a state of shock can't think straight

Winnieg, I too am having surgery 1 yr from my mastectomy. Modified radical mastectomy AGAIN! I didn't know I could have it done more than once, but since my original was "skin sparing" they will do it again with a wide excision of skin,muscle and nodes if involved. I will have a free flap recon surgery. I didn't care about recon, but since I would need a skin graft, they said taking the fat also was not much more surgery. Surgery date is Dec 2nd. They will remove my TE's also. Having a recurrence stinks, but good news is that the suspicious node in my neck came back as noncancerous on biopsy. I hope your procedure goes well. Stay strong. (((hugs))).

Phyllis, Thanks for asking about us. I am 2 wks post surgery, trying to recover. Wow,is that a huge surgery (free flap), I was on the table for 10 hrs! 3 definite tumors, again all TN. They did get clear margins, no obvious spread to lymph nodes, of the 2 they excised, NED. So now the waiting game begins, i feel like I'm waiting for the other shoe to drop.Did they get it all? How will we know, Is it just a clinical diagnosis, since only elapsed time can tell if I'm in the clear? I never thought I'd live my life in such fear... I was always positive, even with my initial dx, but this recurrence really has thrown me for a loop. I feel very depressed, yet I'm not sure why. Maybe it's still remnants of surgical recovery... I'm a big blubbering baby as of late.

My next step most likely is chemo. My MO is submitting my case to the tumor board. I'll get another baseline PET done in the middle of Jan, and will probably start chemo at the end of the month.

How are you doing psychologically? This roller coaster ride can take it's toll, I know you must be so cautious to either feel hopeful or not. Too many rugs being pulled out from under us. I will try to do my best to remain optimistic. I hope you do as well. Let us know how your labs turn out.

take care

Winnie,  I'm glad you're feeling well.  You have been through so much.

my labs were the same when they were repeated, so no scans.  We will just keep watching. I agree about rugs being pulled out from under you.  

The good news for me is that I'm now 4 month post chemo and starting to feel good again. One thing that has helped me is Lexapro.  I cry a lot less and laugh more.  That's a good thing while waiting for the rug trick!

Kathy, thanks for your well wishes. Before my 2nd surgery, my BS said "this is your last chance". I knew if it came back, I would be fighting this for the rest of my life, and eventually it would take me. However,when it came back a 3rd time, it didn't bother me as much as the 2nd. Acceptence does happen, and although I know its not good, I can still have many yrs of good life left. Don't know if its possible, but I hope for 10 yrs to see my girls graduate college and possibly marry. 

New breakthroughs happen every year. Prognosis is only as good as last years medicine. Keep your faith and hope. It's ok to prepare for the worse, but miracles do happen, and who's to say it can't happen to you? (((hugs))).

Jenn- I have to tell you I'm so glad I had my bladder repaired a few years back.....or I would have pee'd my pants laughing at your post!!!  I love your sense of humor.

After all you've been through the CMF may be milder.  All I had to compare it to was taxol and A/C.  I was lucky to have sailed easily thru that particular combo.  Hell, I think I only got a little queasy twice during the whole treatment.

Imagine the surprise after being told CMF was easier and milder......to be swallowing anti-nausea meds like a demon!  Fatigue was also a problem.  There was a point where I was sleeping 12 to 16 hours a day. (In hindsight I'm extremely grateful that Mom happened to be in rehab during this time.  I cared for her with no problems during my first chemo....but I can see that I would have killed myself trying to do it during this round.  Thank you God for perfect timing!!!).

CMF may also be easier for you because I had an outside complication. I picked up C-diff (probably while Mom was in the hospital).  It took almost 6 weeks before it got sorted out and another month to treat it.  I referred to it as the "diarrhea diet"!  I could eat like a pig and continue to lose weight.

I'm so sorry that you and Slow are in this battle, but I'm glad we can be realistic and honest in this thread. And by the way.....if I have to eat "hand-knitted yoghurt" to live, then I guess I'm going to die.......but it will be with some nice rare prime rib and lobster in me belly!!!

Prosper, i too am on carbo/gemzar. I have that morning sickness feeling also. I just work through it with a little ginger ale. If it gets really bad, I have compazine and ativan to fall back on.

I don't know why you think there are no other plans if this combo needs to be stopped. I see you are tn. Why were you on femara? Did they try AC on you yet? My MO states that there are many treatments that would be tried if and when the carbo stops working, both those that have been proven as well as those that are in trials.

I understand that this will be an ongoing problem, as mine is also. But with the many treatments that are available, we still have hope to live for many years yet. My hope is to just keep my cancer stable with no progression. If you feel as if there is not a "plan" for you, either ask more specific questions to your MO or get another opinion. We have to be our own advocates, so find a dr you feel confident in no matter how many you have to go through . 

Best of luck to you. btw, there is a carbo/gemzar board if you have questions of those who are also going through the same chemo.

Prosper - I agree with Slow....now is the time to be asking your MO what their plan is if this regimen stops working.  This falls under my theory of do your research BEFORE the shit hits the fan.

By the way prosper, "calling all TNS" thread is very informative and current.

original diagnoses  11/09

was given the news today it is a  recurrence.

I go to my VS on Tuesday! I would like to think you all! You have gave me hope and strength!

Hello ladies, not sure about a recurence, yet.  I was wondering in anyone has had a chip put in for a previous biopsy, and then noticed that spot felt like a lump.  Had the biopsy/clip put in a couple of years ago, and recently right above scar where biopsy was, I can feel a small lump.  Any thoughts?

Thanks Kathymn, I am planning on a visit to my onc.  The original reason for the clip was due to a tiny lump on the scar tissue, now I wonder if the biopsy clip to check that bump (was scar tissue) is causing this...never ends!!!

 I am 55 yrsold, diagnosed in August 2013 tnbc, dcis, 2b grade 3 with one node biopsied positive at dx.  I  also had a gene panel completed (reviewing 6 genes) all negative including BRCA 1&2. I am working with a teaching hospital in Richmond VA, and have the utmost confidence in their treatment plan for me. All the research I've done supports their plan for me. I had 4 dd a/c followed by 4dd Tax, I opted for the bilateral even though the left side was free and clear. I wanted to make sure we didn't have a repeat with the other side.  My doc tried to do a test (not sure what it is called) during surgery, using a die inserted into the remains of the tumor to follow the die through the lymphatic system. Unfortunately the chemo had obliviiated the the natural flow of this system from the tumor to the sentinel and axillary nodes, so my OS took the sentinel node and 6 axillary nodes as a pre caution. I had tissue expanders inserted during surgery. My biopsy results show clear margins on the tissue and nodes removed during surgery. The standard of care created for the regime: surgery, chemo, rads with under 5cm tumor and no node involvement , and a mastectomy would be no rads. The standard of care currently used for treating tnbc is chemo, surgery followed by rads.  However, there has been no update to the standard of care relating to the need for rads with clear margins after chemo. I am a candidate for a clinical trial where some will receive rads and some will not. The theory is no rads are necessary with a mastectomy with clear margins, post chemo, the standard of care should match the results post chemo or pre chemo, right now they do not. 

I am out here looking at reoccurence stats to decide if I want to be a part of the trial. Icould save myself from unnecessary rad risks if the overall survival rate and reoccurence rate are going to be the same without/with rads. I could also help to create a new standard of care, this is a phase three trial.  

I am open to comment on this decision.  The last piece of info on this trial is that there is no sub typing (meaning not specific to just tnbc, but all types of bc) provided all conditions of the trial are met.  Theresa