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123Donna View Drop Down
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    Posted: Mar 08 2020 at 1:07am
Melanie,  Great news!  I'm so glad you liked 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: Mar 07 2020 at 10:34pm
GREAT NEWS!!!!

I met with Dr. Nanda - very kind and patient with me and I felt very comfortable with her. Turns out my first Dr at Northwestern (Dr. Kaklamani, who is now in San Antonio) knows her, so it made me feel even better about the visit. We discussed a few options and she asked why radiation wasn't considered since it's been one spot over the last 6 years and it was pretty stable (shrunk while on immunotherapy, but I've been treatment free for the last 2 years and no 'significant' changes until recently). She recommends I talk to radiology oncology as my first line of treatment before considering going back to drug therapy.

I had scans scheduled for the following Monday (last week) and so we agreed we would talk afterwards. I would follow up with my current oncologist and Dr. Nanda could review my scans once they were available. She said if I wanted to stay with my current Dr but wanted to discuss or have a second set of eyes/opinion on my treatment, I could reach out at any time. I left feeling extremely comfortable knowing my options as she laid them all out for me.


......
I had my bone and CT scans Monday & my follow up Tuesday. No changes! WOOHOOO!!! Dr. Nanda agrees that continued observation is okay, but still recommends I meet with radiation oncologist. So, at her suggestion, I am going to schedule the consult. I just need to decide now if I want to do it at Northwestern or UofChicago.


Melanie
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 25 2020 at 9:26pm
Originally posted by Mariote Mariote wrote:

Hi BabyMelanie, I'd be very grateful if you could include the name of the immunotherapy drugs that helped you.


Absolutely!!

Durvalumab and tremelimuma

Here is some info: https://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.3052


Dr Cesar Santa-Maria was the primary doctor. He moved to John Hopkins just before the trial ended and I’ve heard he is focusing on immunotherapy there too (?).




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 (1) Thanks(1)   Quote claudepa Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2020 at 4:39pm
I know that 2 labs are producing GM-CSF. One GM-CSF is leukin by Genzyme, and I do not remember the other. But you should find it with google
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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 5:24pm
Txs again Claudepa, I appreciate your help and your insight.
Just to clarify, Gastrofil was prescribed to help overcome severe neutropenia caused by the chemo regime, not to combat the cancer per se.
Does GM-CSF have a generic drug name that I can use to request a prescription?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote claudepa Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2020 at 4:00pm
Mariote. To my knowledge G-CSF has not been described as having anticancer properties. What I see is that Dr Chue publishes in 2019 2 articles where systemic immunotherapy is in fact GM-CSF. And in Europe I observe that several metastatic TNBC patients, including my wife since 2016, have very good results with a checkpoint inhibitor treatment which also includes GM-CSF. I am a retired cancer researcher and I really wonder whether GM-CSF (and not at all G-CSF) would have a specific action in stage 4 TNBC.M means macrophages. And macrophages are known to be important for the cancer immune reaction.
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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 2:06pm
Thanks, Claudepa, for your kind response. My wife has taaken Gastrofil (C-CSF) in the past, would that be the same drug? I think if we need to, we could easily get our oncologist to re-new the prescription.
Kindly advise.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote claudepa Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2020 at 1:03pm
Hi Mariote. My wife has a checkpoint inhibitor and GM-CSF and she is in complete remission after 43 months of immunotherapy. I believe that GM-CSF is important for her. There is this article of Dr Chue with GM-CSF. There is also an other article of a long term remission with chemotherapy and GM-CSF. I do not know if there are other known cases with GM-CSF on stage 4 TNBC. GM-CSF is usualy used to boost white cells,as G-CSF, or to boost vaccines. However GM-CSF has also been described as having anticancer properties.
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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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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 10:43am
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 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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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 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 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 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 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 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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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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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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