Calling all TNs

simplelife4real

Doreen, congratulations on passing the two year mark.  You are actually at the 2.5 year mark the way doctor's count.  That is great your MO has moved you to one year appointments.  I believe that means he/she is pretty confident things are going to be okay over the next 12 months.  

Cocker...cute pic!

megomendy

When do doctors count from? I was talking to my husband about that today? I was thinking I'd count from the day of my surgery?

Radical2Squared

Yeah Doreen! 

My bs started counting the day after my surgery. The way I see it, I'll be one year out before I even finish chemo and reconstruction!

Meadow

congrats Doreen!

slowloris

Hi everyone. Its been a while since I've checked the boards. So here's whats going on:

I have started 3 clinical trials.

#1. A new drug called CB 839, a glutaminase inhibitor. I've been on it for 2 wks, and so far cannot tell if its working or not. I had to be off chemo for 4 wks before, and the wk before and 1st wk of the new drug, 4-5 more little nodules came up on my chest and breast skin. Wk 2 had no new nodules, but I really haven't noticed any shrinkage yet either. I get 8 hrs of blood draws, every hr, to test the pharmokenetics of the drug, every Wed. So we will give it a few more wks to see if it's helping at all.

#2. METAMORPH study(at Univ. of Penn) to identify and study tumor markers in the blood. This may help future patients quantify the amount of growth or shrinkage of the cancer. I won't necessarily have access to these findings, if new markers are found. (They're looking for add'l markers, Like the CA 15 and CA 27 ones)

#3. COMET study (at Penn). It's a genomic testing and education study. A panel of 27 gene tests for mutations was performed at Penn's Center for Personalized Diagnostics (CPD). I also was given an education session to discuss what it means to have this test, and what the results could indicate. I was then given a questionaire to answer. I guess they want to know if the education session is worth giving to people along with the gene panel, or if they should just do the tests without education.

My tests showed 2 mutations, one on the TP53 gene, and one on the RB1 gene. My MO needs to confer with the tumor panel and geneticists and physiologists to interpret these findings, and then she and I will discuss what it all means. She did mention that with the RB1 mutation, The trial phases of a drug targeting that mutation is almost finished, and it's possible a new drug will be on the market in 1-1 1/2 yrs.

So I have been very busy with all of the pretrial tests (CT, PET, Echo, biopsy, etc.) and now with the full days of blood draws, not to mention all of the end of school year things going on with my children. In 2 wks, we go on vacation to Punta Cana, and I am SO ready!!

I hope everyone is stable or doing better. I think of you all often.

Lori

Cocker_Spaniel

Slowloris what a rough time you having.  My heart goes out to you and I hope all these new treatments and trials kick this f*&%% cancer to the kerb once and for all.  Sending a huge big hug that all goes well.

Cat how are things going with you. We haven't heard from you for a while. 

Megomendy I take from day of surgery because to me that is when the cancer went.  The chemo and rads was just an added precaution which hopefully worked.

Hi to Linda, Titan, Luah, BAK and you other lovely ladies. Hope you are all keeping well.

Hugs to all going through treatment and to all of you out of treatment keep it up girls. 

Radical2Squared

Hey Lori,

I'm at UPenn too! Just started chemo there and Dr. Fox has me in a study to track heart condition during AC/T. I get extra blood drawn and several ekg' s during and after testing.

I donated all my tumor material and genetic info to Dr. Tchou after my mastectomy. She's using it in a study she's doing on triple-negative cancer.

I am one of those life-long learner types...I have to say, I've never been to a hospital where everyone seems so interested in finding treatments and cures that work! I'm happy to help them out any way I can!

Enjoy the DR! Sounds lime you deserve it!

LNBCA

Hello ladies, I hope you are all doing well. I wanted to ask if any of you have had hip and back pain after treatment, and it wasn't mets? My Mom, as some of you may remember, has had two separate triple neg. diagnosis', and did chemo two different times, so I am hoping her pain is from the after effects of chemo. She does not take care of herself very well, and has never asked questions or tried to educate herself. I think her hip pain started over a year ago, and I know for sure that she had a cortisone shot for it, and it worked great, but she just had another one a couple of months ago and it only worked for a few days. She's having an MRI of her hip next week. I know she's worried because her onc. has told her if "it" were going to come back, her bones would be one of the first places it would show up. Thanks for the help! xoxoxo

FierceBluebird

Lori and Radical2, I also go to Penn. And Jefferson. And Cooper. And Virtua.  LOVE Dr. Fox!  Had chemo at Virtua, radiation at Cooper, surgery at Penn and Jefferson.  I donated my breast tissue and blood to Penn also.  I had some heart issues after my AC so it's good they are monitoring you R2S.

Lori, good luck with the trial drug. Fingers and toes crossed it does the trick! And enjoy your vacation! 

I haven't had a real vacation in years. And being in treatment these past 18 months is really taking a toll. My husband has used up almost all his vacation time taking me to surgeries and treatments. sigh...  But we need to plan a real vacation one of these days. 

slowloris

Thanks girls for all of the luck being sent my way. I see Dr. Fox in the office, but I see Dr. Gogineni. When I transferred to Penn, my original BS wanted me to see Dr. Fox, but his schedule was so booked up and  my cancer was growing so incredibly fast, I got into see Dr G, and she is also great. I think they all talk to each other at the tumor boards with any stubborn cases, so I feel very satisfied that I am getting top notch treatment.

My BS at Penn has developed a trial immunotherapy treatment and was featured on Fox 29 news. Unfortunately , It is only available for DClS, so I don't qualify. He is working with Dr Tchou on her tnbc trial, for solid tumors, and suggested I go into her trial. Although it is immunotherapy (which is what I ultimately think will be what I need), it is targeting only 1 tumor at a time (It gets injected with your own cells that have been altered). that would mean I would have been off systemic treatment for atleast 3 mos , and I have too many tumors and lymph nodes involved to feel comfortable with that. Eventually, they may expand the trial to involve a more systemic treatment, so it's still not out of the question.

I am really looking forward to vacation, but after that, my husband will also be out of leave. I go to almost everything by myself, which actually I prefer. I only need him if I am being sedated for biopsy or surgery. I enjoy the quiet time for myself, I read, catch up with phone calls, even nap. So it works well with us.

I do have to say that the shared info on this board is really what gives me incentive to continue to fight and find new options, so please keep all of the news articles coming. The one post about Gleevec being studied in Mississippi is of particular interest to me, and my MO and I are already looking into that should this trial not work. You girls (and guys) are the BEST! Everyone, enjoy your weekend.

Lori

Radical2Squared

Lori,

I'm with you. I have never felt more empowered by knowledge and camaraderie than I do on these boards! A great big thank you to all the people who contribute and care.

FierceBluebird

Lori, I didn't hear about Dr. Tchou's TN trial.  Do you know the protocol number of the trial? I looked at Penn's site and only saw one imaging study for TN.

I sent slides to Dr. Cziernecki awhile ago but haven't heard anything back from him. He was my breast surgeon but there was no evidence of cancer last July when I had my surgery and therefore no tumor cells for study.  I had "complete response to chemo" but then just 3 months after finishing treatment started this hell all over again. 

I also find most of my information from the boards here. Although I value every bit of it, I'm pretty tired of playing amateur oncologist and trying to find my own treatment.  I have several doctors but it seems once you are out of their office you are out of mind. 

Don't mind me, I'm just in a funk today. Some days I do really well and other days throw myself a pity party!

Meadow

bluebird sometimes we need a low day to just grumble. You will feel better tomorrow I hope. Just know you have made ME feel better before, so I appreciate you little bird.    Meadow

bak94

Ugh, I am having a mini freak out today. There is a hard lump just above my first port scar, the one that got infected and had to be removed around the end of 2011. The area has always bee sensitive with lots of scar tissue, but the lump that might be bone, seems a little round and hard. The other side I feel a bone, but not as pronounced. Now it is sore and red because I can't stop touching it and comparing it to the other side. It is not a lymph node, but maybe cancer on my bone? It may have been there all along, I just don't know. I have a doctor's appt. in 2 weeks so I guess I will just keep an eye on it and try not to touch it to see what happens. I wonder what tumors on the collar bone feel like? Hard? Squishy? Either or? I am just not ready to do chemo again so I really hope it is just really hard scar tissue or bone build u[:(

PeggySull

I think as a layperson that it is likely not cancer but I would call the MDs office back and tell them you are having symptoms of a recurrence and need to be seen in the next 24 hours.  The sooner you get reassuring feedback you can stop the anxiety from building into a traumatic state.  If your MD will not see you as for a referral to an MD who can.  Only an MD who is a BC specialist can tell you for sure that you are okay (or that further testing is needed.  So sorry you have to go through the weekend worrying.  I'll keep you in my pocket as I'm sure others here will and be looking for you in this thread.

Hugs,

Peggy

JAN69

bak - Peggy has given you good suggestions.  But what to do since it is a weekend?  I guess find some really fun thing to do that you wouldn't otherwise consider.  So sorry you have this worry again.  In your pocket.  Jan

Cocker_Spaniel

BAK do I have to come and strap your hands together to stop you touching it and making it more pronounced and red.  There are lumps and bumps on each side of the body and neither one feels the same.  I am pretty sure it's nothing or it will be if you leave it alone lol.  Get those idle hands onto your handlebars and ride off  into the wind.  Take romi with you.  I do know how you feel. It is going to be a long two weeks and PeggySull and Jan are right,  see if you can get an earlier appointment to put your mind at rest.  I'm picking its scar tissue.   It's a stupid saying really, but keep your chin up,  all will be well.

It was a very sad day here yesterday.  My Mandy's little dog Amy had to be put down.  She was 15, a good age, but that doesn't help really.  She had a tumour extending from the liver into the tummy and finally  wasn't able to eat.  We will all miss her madly.  She used to rummage in Mandy's handbag each morning to try and get to her lunch. It's all of her little quirks we are remembering now.  She was so beautiful.

Slowloris and Bluebird thinking of you both and hoping you get the help you need soon.

I have noticed that if I am a passenger in a car, twisting to put on my seat belt, it causes an awful pain like my ribs are moving apart.  It is so painful for about 1-2 minutes then eases off but then I am sore the next day.  I'm pretty sure its nothing as it's been going on for months,  just a side effect from having the mastectomy and all my lymph nodes removed but geez the pain takes my breath away.  I also get it if I turn around suddenly at work. I don't get it if I'm in the drivers seat as I don't need to twist around to put on my belt.  All these bloody things that cancer leaves us with !!!

Have a good Sunday ladies.  Try not to worry, I know, I'm the worlds biggest worrier, but it never changes anything worst luck.   All of you having a good day,  enjoy it.    

bak94

Thank you Peggy,Jan and Cocker! I am pretty sure it is a scar tissue lump, my pt used to work the area pretty hard and she had broken it up some but I haven't seen her in almost a year so it probably just bundled up again. I will try to get in sooner if I am still obsessed on Monday.

Cocker-so sorry Amy had to be put to sleep. It is the fun little quircky things we miss! My Jewels used to lay right at the door so I would have to make her move every time I opened it. I still open the door very carefully and look for her:( Romi is doing better, but today he stood at the door barking, he wanted me to go outside and sit with him! The ducks are now sleeping with him at night, one cuddled by his face, one by his rear, and one in the middle. Poor dog probably feels like he can't move around!

Bluebird-sorry you are feeling down, perfectly normal with all that is going on. That really sucks to have a complete response to chemo and then have it come back so soon. Hopefully it just means that you will get there again and it will stay away this time. Love your signature, I felt at peace reading it!

Lor-thinking of you! Sounds like you are receiving excellent treatment!

bak94

The last message was for Lori:) Accidently missed the i!

Purplegurll

Good morning,

I'm new to the BCO discussion board. I am having surgery (bilateral mx with lat flap reconstruction) on July 2nd. So I do not have final pathology at this time.This is my second go-round with BC. The first was five and a half years ago, which was a 1.8 cm DCIS that was negative for ER and PR. I had a lumpectomy and radiation. Felt great until I felt a lump just before this Memorial Day. The biopsy pathology shows a 1.4 cm IDC and ILC, ER and PR negative. I don't know about HEU. Maybe they did not test that on the biopsy sample? I've also had genetic testing, which was negative, although my Mom has had BC three times and this is number two for me. 

I am comfortable with my surgical decision but the question of chemotherapy is hanging heavily over my head. I really hope to avoid chemo although my BS seems to be preparing me for that possibility based on the initial biopsy pathology. I know little about oncotype dx texting, which seems to give info about the benefit of chemo to an individual. I'm wondering if they will automatically do this testing at the time of my surgery, or if it is something I would need to ask an oncologist to order a test on? Would there be any benefit to seeing an oncologist prior to surgery? I do not have one at present. Since I had radiation only with my first BC, there was no reason to see a medical oncologist after the initial consultation five years ago. Thank you for any thoughts on this.

Radical2Squared

Hey Purple....

Welcome to the boards! I can't imagine going through this without the support of the ladies here so I give you props for your first go-round...and I'm very sorry you ended up here anyway.

I am making the assumption that your cancer is triple-negative based on where you posted this. If that is the case, I do not think you want to avoid chemo. Well, of course you WANT to avoid it...but you shouldn't. I know there is a lot to read here, but if you look at the posts here, you'll see the has it's own set of rules. There are no hormone receptors for our cancer and therefore no fancy pills to take to help us fight it. There are some trials going on, but for the most part, the standard treatment for triple negative is surgery and chemo. Some oncologists believe radiation helps as well and that would depend on the tumor size also. Current studies are showing the bc responds to chemo BETTER than other cancers. Tn is also sneaky. It likes to come back and pop-up in other places in the body. These are a few reasons why chemo becomes important with our cancer.

You will see many ladies discussing oncotype. There is no oncotype score for tn. It's just chemo. I'm not sure if this information was available when you last had bc. Your bs should be able to discuss it with you as well. If he/she doesn't start talking about the differences with tn bc then I would start looking for an oncologist who knows it is different!

I am not an expert...but I hope this gets you started.

Meadow

Purple I totally agree with R2S, on all points. Chemotherapy has been made more tolerable with advances in anti nausea drugs. I believe it was necessary to save my life.  We are here to support you.

slowloris

Bluebird,

I'm sorry you are in a funk. It's ok to feel that way, just try not to stay there too long.

the trial that Dr. Tchou is doing is titled "Clinical Trial of Autologous Met Redirected T cells Administered Intratumorally in Patients with Breast Cancer". She is the Principle Investigator. Both Dr. Fox and Dr Gogineni (along with others) are listed as Co-Investigators. Having Metastatic Breast Cancer is required. Step 1 is only recruiting 6 patients. your tumor  cells also need to exhibit a substance called cMet.

If you want more information, Dr Fox or Dr Czernicki or Dr. Tchou would be who I would contact. If you only have 1 or 2 recurrent tumors, it seems to me to be a promising treatment.

I am trying to hold it together emotionally too. 9 more days until vacation. But I am very worried because it seems more spots are coming up daily, and my breast skin is getting red rash-like. I'm hoping its not turning into IBC, although I always suspected that from the beginning. I will wait until after I get back from vacation, and if I see no improvement, I will stop the trial and ask for the strongest chemo they are willing to give me, even if it means AC again.

flimsical

has anyone here been given Herceptin despite a TN status? Some of my genomic testing has convinced my onc to give it a shot. I am a 1+ for her2. Just curious if anyone else has experienced this!!!

Nettie1964

Ok, I have had this question rolling around in my head for quite some time and never really put it out there because I'm not sure there is an answer.   Anyway, just wondering if any of you may have thoughts on this:

Once DX with BC, we decide to either have a MX or LX...my question is this...In someone that had a LX, if the cancer returns, why does it most of the time return to another part of the body, in other words, it metastasizes.  I know sometime, women have a "recurrence" in the breast, but just curious about the mets part when the breast is still there?

I'm sure that probably doesn't make any sense, but I just had to get it out there so maybe I can stop thinking about it!

Also, how many of you have tumor markers run during your blood work and did your MO run them each time?  If not, when and how did they decide to start running them?  I do not have copies of my lab reports except for the very last visit, this was the visit after chemo, rads, and port removal, however, my MO did not seem to think it necessary to run the markers, this makes me very nervous.  So is there a certain amount of time that passes after treatment before they start running this?

Thanks for any input!

jenjenl

some docs just dont do tumor markers, they are reliable for some and not others.  My understanding is they have to start when you have the tumor so they can have a baseline to trend.  My doc doesnt do them. 

Nettie1964

Thanks Jenjen!  I guess that's the same for my MO!  I am just so worried that something is amiss with me, but it's like the old saying, if you go to the doctor enough, they will eventually find something wrong!  So I guess I'll try to live in the moment and try not to worry so much!

simplelife4real

Hi All,

I just finished treatment about a month ago.  I went in for my first 3 month post treatment check up about a week ago.  Originally, my MO told me I would be having 3 month checkups for the first three years and then every 6 months for the next two years.  She totally surprised me when I saw her for my first 3 month check up.  She said she wanted to see me in 4 months for the next check up and then every six months!  I was so surprised that I didn't really think to give her the third degree on this.  I'm wondering if the standard of care is changing for people with TNBC in terms of followup visits.  My MO is at Vanderbilt and is a leader in the field of TNBC so I tend to trust her, but I'm surprised at her change in plan for me.  I will quiz her on this when I see her again, but in the meantime....I was just wondering if anyone else with TNBC has experienced a similar change in follow-up care.

Meadow

Simple, my doc wants to see me every 3 mo for 2 follow ups then every six for 2 follow ups, then yearly so kinda of the same schedule. I like following up, looking forward to the first one in a few weeks. 

Nettie1964

Simple, no change for me as I was never given a follow-up plan!  However, I ended treatment in October, saw my MO in November, then again in February and now I don't see him again until August!  So it seems it was at the end of treatment, then 3 months and now 6 months!  However, I did see my BS surgeon in between!  And I think this will continue but the BS visit was in March, so from March until August is 5 months!