Calling all TNs
Comments
-
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.
0 -
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!!!
0 -
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!
0 -
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.
0 -
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!
0 -
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.
0 -
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.
0 -
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!0 -
TNBC is a hot area of research so you could be right about wanting to keep close tabs on you
0 -
Actually, my last visit was probably considered my second followup with the MO because I saw her a month after finishing chemo. It sounds like my follow up schedule is basically the same as Netti and Meadow. Thanks! It does sound like things are changing in terms of MO followup. I also have followups with my BS every six months, so the visits are somewhat staggerd. It's a two hour drive each way for me to get to Vanderbilt and since they don't do anything except routine blood tests unless something is out of the ordinary, it's a bit of a relief not to have to go every three months. I'm glad I posted here about it....I feel much better now!
0 -
I must be a leper because I've posted on several of these boards and have gotten no responses. I sure am glad to have support elsewhere because this is ridiculous!
0 -
Flimsical, you are not a leper....welcome! I didn't respond to your earlier post because you had asked if anyone was taking herceptin here and I don't take it. I don't know of anyone with TNBC offhand that does, but I'm sure there are others out there in your situation. Don't give up on us....we are actually a supportive group.
0 -
Thanks simplelife... I was just getting frustrated! Didn't mean to lash out. Thank you for responding. :-)
0 -
Flimisical, I must have missed your post! Sorry! But I'm not on Herceptin either!And I agree with Simple, this is usually a very supportive group! Although I too have times have posted with no response, but I find that's usually because no one has any answers to my question!
0 -
Lori, Thank you so much for the information. I hate to add to your emotional anxiety but I'm really worried about your rash. With IBC it's extremely important to get diagnosed right away. Is there anyone who could see you soon? Plus it might help to find out that hopefully it's nothing and you can truly relax and enjoy your vacation.
And bak, you too! Call for a sooner appt. and hands off, (I'm guilty of the same thing! I once had an onc. tell me "stop mashing on that thing!) LOL and try to see someone sooner. I hate when appointments are delayed. Just adds extra worry.
flimsical, I often wished I could try Herceptin too. I'm convinced my cancer was triggered by the Estring. Had normal mammogram, normal breast exam and got scrip for Estring. Two days after insertion started with rash and swollen breast. I am TNbc but I also have 1+ her2 . My onc. says insurance wouldn't cover Herceptin.
Welcome Purple! Sorry you are here though.
{{{Meadow!}}}
0 -
Flimsical- yes, we are a supportive group and I too think there has been no response simply because no one has an answer to your question. I would ask your doctor if you are considered triple negative or not. I don't know what category a low HER2 score put you into. I can't think of anyone one on this thread that is taking Herceptin. Have you checked out a Herceptin thread and looked at some of their profiles for ER/PR- ? I hope you find your answers and regardless of what "category" you fall into, you are always welcome here! Best wishes!0 -
Flimsical, welcome to our group and sorry your not getting replies elsewhere. I think if we don't have an answer we tend to leave it to someone who may know or be in a similar situation.
My path stated less than 1% ER and I asked my MO about taking anything for that but she said that SE wouldn't warrant it and I am considered trip neg. I know this isn't the same but it's close! ;-)
0 -
Flimsicle yes welcome! We are glad to meet you!
0 -
I finished my treatments 14 months ago and I do not get any tumor markers done or scans of any kind. I see my MO every 3 months - have never questioned the frequency of my followup visits. I would see it as a positive not having to go every 3 months. The range of followup is so different from place to place and doctor to doctor. It puts the onus on ourselves to be diligent in observing for lumps and rashes and when we don't feel right - to go and get things checked out by a doctor.
0 -
I am so far behind I think I minus well be new..................:)Waiting for the results of a routine pet scan and you all know how nerve wracking that can be. I have not been feeling my best so I am really nervous.
Just wanted to share this link incase you all had not seen it.
0 -
Sadie thinking of you, praying for you.
0 -
A dog rescue needed homes for these puppies, so they did this and it worked, they were all adopted!
I saw this on another thread and it made me smile so I thought I would share it with you all. Meadow
0 -
Thank you Meadow and what a cute picture..................:)0 -
All good thoughts and prayers would be appreciated! Thanks...
wwww.katebeatingcancer.blogspot.com
0 -
I will take one of those puppies any day!!!
0 -
I was technically "Her_2 low", so I agreed to take part in a Herceptin trial for people who were "weakly positive", and normally considered negative in consequence.
I was drawn into the control arm of the study though, so I'm not actually taking the drug. I was not sure whether to be relieved or disappointed, when I found out. There's no guarantee it'd make a difference, for one thing, and I know some people are not that happy on it.... One good thing anyway is the supervision may be closer because of being on the trial, so hopefully any mets would be picked up super quick!
0 -
Flimsical-my doc wanted to use Herceptin on me. I think I was plus 1 but my insurance would not cover it and I could not afford it. He firmly believed it could, based on research, help even with slight her2. Sounds like you are getting cutting edge treatment!0 -
5 hours ago Homehelp wrote:
hi all
My wife is getting her second chemo treatment right now
She has really good-looking head covering that she got from Sherls in New York
She also was able to get a natural hair wig and natural hair had home for her scarf and hats
0 -
mom and daughter at second cycle of chemo. She has a natural hair fall with a pre-tied bandana that she got at sherels hats in New York. There are stores in queens, Long Island, and brooklyn. She bought a custom made natural full hair wig and a fall that look great with these soft comfortable bandanas and with hats from sherels.
http://www.sherels.com/mobile/default.aspx
This hat store also has really soft silky head coverings that are great to sleep in. The wigs are great and from Quarum on central avenue in cedarhurst, NY on Long Island (Anthony is the wig specialist there) . My mom looked into having the ice caps for during chemo, but the nurses did not recommend it as it is a lot of work and is not always effective. This has been working for her and she looks quite stylish! I hope this helps others and if you have any other questions we are here to help!
Dx 3/17/2014, IDC, 2cm, Stage I, Grade 2, 0/1 nodes, ER-/PR-, HER2-
0 -
Hi Bak94 - I too just found a lump but it is in between my breast that I don't believe was there before and it is on the bone. I am totally freaking out and sick to my stomach - I keep feeling it and hoping it would just disappear. This is my second time around with breast cancer - first time I made it 8 years out and now just had surgery a year ago in April for TNBC on the opposite side. I made an apt with the BO for Thursday - not sure I am going to get through the next couple of days without worrying myself to death. I know there is nothing I can do but wait and hope it is nothing.
We will get through this!!!!
0
