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Immunotherapies anyone?

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Judy15ws View Drop Down
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    Posted: Apr 22 2018 at 10:01am
Hi again. This is my second topic-starter, and I apologize if this clogs up the message board. I am feeling completely overwhelmed and confused! First I was told that I had triple negative bc when only part of the core biopsy pathology report was done. Then the completed path report read that I was ER negative, PR positive, HER negative. That was early March. I had lumpectomy with three sentinel lymph nodes removed on March 25th. On April 10th, I moved cities. This in itself was quite stressful, as I had lived in the same city for 48 years, and in the same house for 40. On April 12th, I had my first appointment with an oncologist to talk about treatment. The good news from the pathology report from the surgery on March 25th was that I was stage 1a (a PET CT from several weeks earlier was also good news in that no metastasis was found), but the bad news was that I am definitely TNBC. 
I had heard that the treatment options for TNBC were limited, but the oncologist pretty much stunned us with offering a chemo course of paclitaxel and carboplatin, once a week for 3 months because of my age (72) and comorbidities (won't get into those), which has only a 6% 5-year survival rate. When we indicated our disappointment with the 6%, the oncologist said that he has treated with only a 3% survival rate....
So now I am looking for new treatments, to suggest to my oncologist to add on to, or add after, the chemo. Has anyone experience with angiogenesis inhibitors (Avastin, Sutent), epidermal growth factor receptor inhibitor (Erbitux), or androgen receptor immunotherapy? 
It is really depressing. I had started planning this move quite a while ago to be closer to at least one of my three children, not to mention grandchildren. I was looking forward to a big change for the better in my quality of life, and then get smashed with breast cancer. I tried to perk up with the good news that it was caught very early, but the triple negative typing means a poor prognosis and why does the chemo being offered to me as treatment option have such a low 5 year survival rate? I know, this is a question for my oncologist.... But I would dearly love to know if anyone has had one of the new immunotherapies for TNBC in addition to chemo following surgery. 
I am still surrounded by boxes to be unpacked and put away, and have a halfdozen phone calls to make at the beginning of this week. Then another CT and baseline blood tests. Oooof. And I have a feeling that I haven't yet really started.....
Thanks for answers!
All the best to all you gals. Judy 
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EllenNva View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EllenNva Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2018 at 10:47am
Hi. Judy, I am so sorry you are are dealing with so much.
I was diagnosed Dec 2015. I was given carbo/Taxol chemotherapy. My schedule was similar but I got it 3 weeks in a row and then off one week for a total of 16 infusions. These chemo drugs totally killed all the tumor cancer. However I started out with a lot of cancer in lymph nodes and still had some after finishing chemotherapy. I also had 33 radiation treatments. I finished my treatment with a oral chemo pill call Xeloda. A lot of Triple Negative ladies are taking it to help keep them from a recurrence. Even with so much cancer still in nodes after IV chemo I was never told I only had a 6% chance to survive 5 years. However I am at a very high risk for a recurrence because of the nodes. Will you be getting radiation after chemo? I would ask your oncologist about Xeloda. Maybe a second opinion is something you should consider too. I hope this helps.
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2018 at 6:57pm
So sorry you are going thru so much Judy! I had a recurrence in 2016 and did 12 weekly Taxol with 4 Carboplatin added every 3 weeks. My tumor was right on the line of being stage 1 and 2a, I got a complete response - there was no cancer left when I had a mastectomy after chemo. I wasn't given a % chance of living or dying, but I know it's far higher than 6% that I'm alive in 5 years. I'm thinking it must be a combination of your other illnesses that's making your doctor say this? Regardless, you are a prime candidate for a second opinion!! No way should you, in your circumstances just see one doctor before you decide on treatment.
Regarding immunotherapy, I think they've stopped using Avastin for TnBC? I have a friend that just did a Keytruda trial, but it called for Taxol and Carboplatin followed by A.C. along with the Keytruda. it was rough, she's had lot of side effects, delays in treatment, she finished chemo last Tuesday and by Thursday night she had 103 fever. She's in the hospital with extremely low blood counts - all of them - and lactic acidosis. it was a brutal chemo regimen, and I don't know if there's an easier Keytruda study out there?
I was going to do 6 months of Xeloda after surgery, but the complete response to chemo pre-surgery meant that none of my Drs. thought it was necessary. That's definitely something your doctors should discuss with you.
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2018 at 9:37pm
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 Judy15ws Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 2:34am
So, I'm jumping the gun by asking about "new therapies" like Xeloda and Avastin if I haven't even started any chemotherapy, and have no metastasis or node involvement? I was diagnosed only weeks ago, and have only had lumpectomy, and the pathology reported that the tumor had clean margins..... From reading on internet, first chemo is done, then if there any sign of cancer coming back, various other therapies are tried.... Is this correct? Thanks for any reply. It is hard for me to be a patient patient.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 7:54am
Judy,

There have been a few threads talking about these other drugs.  I'll post some links for you.

Avastin was very popular in clinical trials when I was diagnosed in 2009.  After some studies like the following were posted, I'm not seeing it being used as often.

Carboplatin Yes, Bevacizumab No for Triple-Negative Breast Cancer

SAN ANTONIO — Adding carboplatin to paclitaxel in the neoadjuvant setting for triple-negative breast cancer significantly improves pathologic complete response (pCR) rates. So, for that matter, does adding bevacizumab (Avastin) — somewhat.

The catch is that bevacizumab adds only an incremental benefit, does not have synergistic activity with carboplatin, and is associated with significantly increased toxicities that could outweigh the benefit, said William M. Sikov, MD, from the Warren Alpert Medical School of Brown University in Providence, Rhode Island.

"Should carboplatin be routinely added to stage II or III triple-negative breast cancer? With the caveat...that we do not have long-term results — I think if you're looking in the neoadjuvant setting, my answer to that question would be yes," Dr. Sikov said in a media briefing prior to his presentation.

http://forum.tnbcfoundation.org/adding-carboplatin-increases-pcr_topic11688_page1.html

http://www.eurekalert.org/pub_releases/2013-12/dci-ads120613.php#.UqtrghRjhhk.scoopit


Xeloda improves survival for some breast cancer patients who do not achieve a pathological complete response to chemotherapy 

http://forum.tnbcfoundation.org/xeloda-after-neoadjuvant-chemotherapy-and-surgery_topic13153.html


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 Judy15ws Quote  Post ReplyReply Direct Link To This Post Posted: May 07 2018 at 8:07am
Thanks to everyone for their comments. On my next appointment with the oncologist, I flatly asked him to please give me the reference for his comment that 6% of women benefit from carbo/taxol by surviving 5 years after treatment. He explained that he got this by plugging in my particular situation into an online "formula" at http://www.predict.nhs.uk/predict_v2.0.html
When I used this tool, I saw that the oncologist for some reason played semantics. Using this tool for my specific parameters, I saw that 75% of women like me survived 5 years without chemotherapy after surgery, but "an extra 6 out of 100 women treated are alive because of having chemotherapy". This is what he meant by using the word "benefit" with 6%. So actually, I should understand that by having chemo after surgery, I improve my chance of surviving 5 years from 75% to 81%. Sounds quite different, right?
I was a breastfeeding counselor for many years before writing a thesis about breastfeeding and getting a master of medical science degree. During these many years, I had seen over and over how researchers report in words their statistical findings and how doctors who have time only to read the abstracts of medical articles can misinterpret the reported statistics.
So I am good.
Port is in, and I start carbo/taxol in two days.
Take care, everyone!  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: May 07 2018 at 6:34pm
I was on an immunotherapy trial called ISPY2. My central lymph node normalized (although discovered after surgery to still have cancer cells), one of my small tumors completely died off and my main tumor shrunk from 4.5cm to 2.5cm. I did very poor on AC chemo and saw almost no change in the tumor that was left and now am facing a distant recurrence where chemo isn’t an option. I don’t know of any other trials that would fit your situation, but have heard positive information about immunotherapy outside my own experience...a trial may be something to look into.

I’ve also made a big change to my diet and have started eating a Ketogenic diet. The idea is that cancer, and more recently TNBC specifically, feeds on sugar/carbs and when you change your body from processing sugar for energy to using the set-up of low carb high fat Ketogenic diet you basically starve the cancer (that is the hope). It’s not a guarantee, it’s hard and sucks sometimes, but I’m alive to keep trying. I encourage you to research some of this and see if it is might be right for you. 6% isn’t 0 & you aren’t a number your situation is unique to you as the life you’ve lived. Don’t lose hope give this disease heck!


Edit: ISPY2 was for a PARP inhibitor not immunotherapy. Sorry for the misinformation on my part.

Edited by parrynd1 - Jun 11 2018 at 9:54pm
Dx TN IDC 9/016 Age 28, Stage 3c, Grade 3, 4.5cm, .7cm, 1/5 Nodes, BRCA -, KI-67 >90%, 6/6 I-Spy 2, 4/4 rounds DD A/C, Lumpectomy w/reduction, 3 nodes removed, weekly Taxol/Carb1/12
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: May 23 2018 at 7:04pm
My friend in the Keytruda trial had her mastectomy last week, we found out yesterday she's NED! it was a tough regimen requiring Taxol & Carboplatin first, followed by A.C. Along with the Keytruda - she had two chemo delays for neutropenia and was hospitalized with a random infection after her last chemo - but she's NED, so YAY! Today's a good day :)
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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 gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2018 at 9:15pm
    Judy 15: Perhaps a second opinion is possible?



Edited by gordon15 - Jun 12 2018 at 3:40am
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jmichal Quote  Post ReplyReply Direct Link To This Post Posted: 14 hours 15 minutes ago at 3:16pm
Hi, here is my story about immunotherapy. I was diagnosed with TNBC last September, stage 1b with lymph node involvement in 1 node. I am 62 years old and had been in excellent health prior to this diagnosis. I was offered and  chose to participate in  a double blind study of  Keytruda involving neoadjuvant chemo: the study drug every three weeks, 12 weeks of weekly pacitaxel and carboplatin followed by three  doxirubicon and cyclophosphamide with the study drug every three weeks. After that, I had a lumpectomy. I tolerated the chemo pretty well but developed thyroiditis during the second part of the chemo leading my oncologist to tell me she believed that I was getting the Keytruda as thyroid impact is a known  side effect. After the thyroiditis, I started having low thyroid and now take medication and it wasn't too hard to get it regulated.
After my lumpectomy the pathology report came back that I had  a 100% response to the chemotherapy and Keytruda combo. No discernable cancer was found. I am finishing up 6 weeks of radiation as added insurance that the cancer is wiped out. I will also continue just getting the Keytruda for another six months after I recover a bit from all the radiation ..
I am  really happy about  the response to the chemo and Keytruda! I have ,however developed more side effects  that I think are caused by the Keytruda hyping up my immune system: mouth sores and blisters which I get a mouth wash for, some swollen cuticles and weird itchy bumps on the soles of my feet. None of it has been intolerable, just annoying and I feel like i can handle these side effects as it is better than having cancer! I have had all my organ functions followed closely and get frequent blood work done and have been pretty healthy overall.
I don't know what the final results of the study will be, but I heard that there were others who had the same level of response .

JMichal
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