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Any long term survivors?

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Leahstuffle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2019 at 1:03pm
Thanks, Donna! I don't know the efficacy of each of the options, but I am relieved to have something that isn't *just* chemo to work with. I'm excited about a multi pronged approach.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote britricker10 Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2019 at 9:53pm
That's very good news, Leah! This will be an encouragement to many. I know you are in the thoughts and prayers of many people. Best of luck on this journey! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2019 at 4:15pm
Hey friends, I just got results that I am PD-L1 positive and will start abraxane and tecentriq next week. I also have low platelets (75,000) and my hematocrit came back borderline low, too. The concern is bone marrow metastases. I was really bummed to hear that and it makes me very nervous. Hoping for an excellent outcome from the immunotherapy!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote britricker10 Quote  Post ReplyReply Direct Link To This Post Posted: May 23 2019 at 8:02pm
Good luck! Hopefully all goes well! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MikeW Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2019 at 11:43pm
My wife (TNBC with bone mets only) has very a high PDL-1 and is being considered for Atezolizumab (Tecentriq). However, she's had brain surgery followed by Whole Brain Radiation and is very weak. Another thing she's extremely allergic to Taxol which is usually given with the Tecentriq. Is there anything else she could take in substitute?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JMJ Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2019 at 10:08pm
MikeW, I too had brain surgery and whole brain radiation a year later, I also had cyberknife to the tumor bed in my brain. I was NED after cyberknife. I had a recurrence in my brain in a different area, then had the whole brain radiation. 

I've been on Xeloda for almost a year, I've not had any spread into my body. How did the whole brain radiation do for your wife, or has she had any brain scans since treatment? The whole brain radiation either shrunk or stabilized all the cancer on the lining of my brain. I have one lesion that filled with fluid so we are watching that to make sure it doesn't press on my brain too much or they will drain or remove it.

Personally, the steroids they gave me for the radiation were the hardest part. I didn't realize how many side effects they were causing until I started weaning off of them! Fatigue was a side effect of the steroid, and surprisingly, weakness of the quadriceps is another specific side effect. And I thought I was just out of shape and weak because I had gained so much weight from the steroids. The steroids also made me very irritable. Once that started to lift during the weaning off of steroid process, I was so glad to know it was Med related. Long story short, if she's on a steroid, research the side effects to help you both get through it. The brain surgery was more exhausting than the radiation for me, but again I was on steroids after the brain surgery too, and had to switch to a different one because I had every side effect that you are supposed to call your dr about, but I didn't know for months because I didn't read the paperwork the pharmacy gave me. I was just out of it mentally and my brain just couldn't make connections! 

Oh and the #1 advice I got when I needed it was to get a neuro oncologist if you haven't already. If you haven't that might be the missing link. Now I see that your wife had bone mets alone, nothing in the brain? So was the radiation for bone mets to the skull? If so, are there oncologists that specialize in bone, like a bone cancer specialist she could see? 

I had no idea that my medical oncologist only treats from the neck down, and that it's the the neuro onc that treats the brain and spine. What I like best about the neuro onc is that he "gets" me, he's a neurologist and an oncologist, so all the neurological deficits are addressed along with treatments, he specializes in treating the brain, and is up to date on all the options (I go to an NCCN facility, and recommend that).

I hope that helps a little, and I know it's a long reply, thank you for your patience with me.


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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2019 at 11:00am

Case report of long-term survival with metastatic triple-negative breast carcinoma

Treatment possibilities for metastatic disease





Edited by 123Donna - Dec 20 2019 at 11:01am
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote claudepa Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2020 at 12:11pm
There are 7% complete remissions in the IMPASSION 130 clinical trial for metastatic TNBC (10 % for patients which are positive for PD-L1 in the test of immune cells infiltrating the tumor.). The treatment is atezolizumab and abraxane. Among these complete remissions there are now long term survivors. My wife had a different immunotherapy treatment in Europe and she is in complete remission 42 months after begining the treatment.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote babymelany Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2020 at 7:33pm
7 years out from original diagnosis.

I finished an immunotherapy trial just about 2 years ago. I've been doing a Bone Scan and CT Scan of the Pelvis, Chest and Abs. Over the last few years, they showed a 'spot' they had been watching which went away at one point. My scans in August showed a spot (same place) and in December, they said the spot is has had very minimal change (.5 cm is minimal?), but that the bone scan showed nothing. They want to keep an eye on it and have me do the CT scan again in 3 months rather than 6 months - but not to do the Bone scan since it wasn't showing anything. I've been a hot mess every since. My Dr said the immunotherapy has done all it could do. She didn't sound worried, but she didn't sound great about it either. So, ok, I get it. But that's it? So now, I can't stop freaking out and I've been in constant state of worry, stress and panic attacks since my conversation with her (I started the trial with another Dr that had told me not to have hope and I told him he needed to change his attitude and he did). We have a Dr at work and she Rx'd me Xanax to relax my mind. I haven't taken it yet. So, I've been here before where a Dr has told me there was nothing else and then BAM! I have some amazing scans that no one expected.

Why wouldn't they want to do more or want to scan me in a month? Why am I waiting 3 months? I'm looking to get a 2nd opinion at Cancer Center of America. Not sure where else to turn at the moment. I guess I just need some hopeful news to remind me to keep fighting and have faith and not give up.

On a side note: My 16yo daughter has been battling with depression and anxiety for the last year. It got really bad in Aug/Sept and she spent some time doing some outpatient therapy and is now doing TMS. I don't know if this is why I'm just feeling this way - her juju energy effecting my usually "nothing is impossible" attitude.
SINGLE MOM OF 2,BRCA1+ Lump 11/12,DX 1/24/13 BC @age 36 (2 days B4 bday),3/5/13 Double Mast,Stage 2, Grade 3, 3.4 tumor 0/6 nodes
AC/T 4-7/13,Rec-chest wall 9/12,Proton 10-12/13,CT NED 1/14,Rec-5/14
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Post Options Post Options   Thanks (0) Thanks(0)   Quote claudepa Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2020 at 2:56am
babymelany. Was the diagnosis of metastatic TNBC 7 years ago ?
Did you stop immunotherapy 2 years ago ? Clinicians say
that the immunotherapy treatment for
metastatic TNBC is for life ! At this time at least. May be the spot
is begnin since bone scan shows nothing. Did you have a pet
scan ? 
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babymelany View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote babymelany Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2020 at 1:44pm
Sorry, no, 5 years ago.
Yes, clinical trial of 2 years immunotherapy and scans every 3 months for two years.
No pet scan.
SINGLE MOM OF 2,BRCA1+ Lump 11/12,DX 1/24/13 BC @age 36 (2 days B4 bday),3/5/13 Double Mast,Stage 2, Grade 3, 3.4 tumor 0/6 nodes
AC/T 4-7/13,Rec-chest wall 9/12,Proton 10-12/13,CT NED 1/14,Rec-5/14
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claudepa View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote claudepa Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2020 at 6:20am
5 years and no obvious sign of progression, it is a very good result. My wife began immunotherapy 42 months ago, almost complete remission after 2 months followed by complete remission and progression, because treatment was reduced, after one year and again complete remission with full treatment since 2 years. Therefore we do not dare stopping the treatment. She has no biological markers so she is followed by pet-scans.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2020 at 9:23am
It's good to see you again Babymelany, but so sorry for the reason you're here. I don't blame you at all for freaking out! I don't remember, was your original tumor and chest wall Mets grade 3? I think so, because I think I remember your chest progression happened quickly. The reason I ask is, 5 years is a loooooong time for grade 3 tnbc to just be "dormant", immunotherapy or not. You've had a mastectomy and there's no sign of tumor in your remaining Breast tissue so this would have to be a case of that - unlikely and unusual. That said - I'm all known mutation negative, and I grew a brand new tumor after 7 years - very unlikely and unusual. My intuition told me it was back, but they couldn't see it with mammogram and ultrasound. My oncologist is luckily Very Good and experienced - she said she always goes with the gut feeling of survivors and ordered an MRI. Insurance denied, said wait 6 months and redo scans. My Dr said don't worry about the money just do it, and there it was. I didn't tell you that to scare you, it was to urge you to listen to your gut. Don't look for reasons to override it, listen to it. And if it says DO NOT WAIT 3 months it is indeed second opinion time. But you need to go for the best damn cancer care you can possibly go to for that opinion. Are you currently at Northwestern? I think you are in Chicago and I believe that's the best there? Outside of that, I'd love to see you go to MD Anderson, Sloan Kettering in NY, the Mayo, John Hopkins, Cleveland Clinic, Dana Farber in Boston, UPMC Pittsburg - I've had mediocre care and awesome care (MDA is amazing, maybe saved my life) And I've been volunteering with patients receiving mediocre to terrible care and amazing NCI rated care - the difference is life changing and life saving! With your history we can get you into one of these places quicker than normal I feel quite sure. Only you can decide what you think and feel, but don't look for reasons to override your own intuition - you've been at this a long time, nobody knows your body like you do - doctors be damned. 

Nobody that's been thru TNBC thinks .5 cm "minimal" . Freaking doctors Censored 
Im so sorry about your daughter, there's nothing as stressful as having a sick kid. The best thing you can do for her ultimately is take care of her mom. Let us know how we can help! Hug Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote babymelany Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2020 at 11:52am
Hi Kelly!

I don't know if it's intuition of just fear that is causing me to feel panic. Maybe because I've been on treatment for soo long that it's super scary to have been off of it for over 2 years now and my doctor didn't even think twice.

I just sent a request to make an appointment at Dana Farber - I have some extended family (my ex) in Boston area so I think I could work that out. I tried to look up the Cleveland Clinic (not sure which location or how to get an appointment there). I'm in Illinois and a single mom so I don't know how to pull off the travel for anywhere outside of Illinois. The drive to Cleveland at least is closer. Ack. I wish I could get out of my own head and stop stressing and thinking about it all day and night. :(
SINGLE MOM OF 2,BRCA1+ Lump 11/12,DX 1/24/13 BC @age 36 (2 days B4 bday),3/5/13 Double Mast,Stage 2, Grade 3, 3.4 tumor 0/6 nodes
AC/T 4-7/13,Rec-chest wall 9/12,Proton 10-12/13,CT NED 1/14,Rec-5/14
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Post Options Post Options   Thanks (0) Thanks(0)   Quote babymelany Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2020 at 7:00pm
So, this is a stupid question.....do I have to go to these places to get a 2nd opinion or can they do phone consults and I send them my records? Sorry, I know that must be silly to ask, but I've never thought about going out of state for treatment before.

I did meet with my oncologist this week and I feel better having met with her, but I still have some reservations about the lack of treating this aggressively.....does that make sense?
SINGLE MOM OF 2,BRCA1+ Lump 11/12,DX 1/24/13 BC @age 36 (2 days B4 bday),3/5/13 Double Mast,Stage 2, Grade 3, 3.4 tumor 0/6 nodes
AC/T 4-7/13,Rec-chest wall 9/12,Proton 10-12/13,CT NED 1/14,Rec-5/14
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2020 at 8:05pm
babymelany,

I think most of the time, you have to have an in-person visit.  Maybe others will chime in if they were able to get a phone consultation. 

I had a TNBC friend that entered into a clinical trial with Dr. Rita Nanda (Chicago).  She focuses on TNBC, but also treats all forms of bc.  I'm not sure where you live in Illinois, but here's a link with more information about Dr. Nanda.









DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote babymelany Quote  Post ReplyReply Direct Link To This Post Posted: Feb 14 2020 at 12:07pm
Thank you, thank you Donna!

I'm in at UofC next week with Dr. Nanda!! :)
SINGLE MOM OF 2,BRCA1+ Lump 11/12,DX 1/24/13 BC @age 36 (2 days B4 bday),3/5/13 Double Mast,Stage 2, Grade 3, 3.4 tumor 0/6 nodes
AC/T 4-7/13,Rec-chest wall 9/12,Proton 10-12/13,CT NED 1/14,Rec-5/14
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Mariote View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mariote Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2020 at 10:43am
Hi Hopeful, I'm very glad you found a caring oncologist. Question, when you say "immunotherapy", do you mean "GM-CSF" as stated in the article or a checkpoint inhibitor? Thanks and God bless.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mariote Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2020 at 10:45am
Hi HopefulToday, by combination, do you mean Tecentriq + Nab paclitaxel? We are considering the same treatment. Did you end up going into it? Would you mind sharing your experience? Thanks very much.

Edited by Mariote - Feb 20 2020 at 11:06am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mariote Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2020 at 10:57am
Hi BabyMelanie, I'd be very grateful if you could include the name of the immunotherapy drugs that helped you.
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