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Any long term survivors?

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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: 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 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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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: 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 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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claudepa View Drop Down
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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 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 Iíve 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 (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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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: 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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