Immunotherapy Atezolizumab (Tecentriq) Metastatic Triple Negative Experience
I just wanted to share my experiences with accessing the immunotherapy drug Atezolizumab (Tecentriq) that is currently not on the PBS (but hopefully will be soon!). In 2017 I was treated for TNBC stage 3 breast and lymph nodes, had 3 amazing years of good health, family and travel, then in March 2020 found an enlarged lymph node in my neck, same side as the BC. It took several ultrasounds (originally diagnosed as a vein) and then a biopsy to find out if was a small 1cm met tumor. I was referred to a trial at Peter Mac, but after testing (PDL1 Positive) found out the tumor was too small to qualify. Then referred to a different hospital for the same trial, waited 4 week for the tumor to grow only to find out the same thing, however was given the option of self funding through the private system. I had at each hospital ask about this, and somewhat annoyed that I was given a rough cost per treatment, not the compassionate deal that the pharmaceutical company was providing - $25K for 5 treatments, then no cost thereafter provide there is a response to treatment. Referred back to my original oncologist who completed all the paper work to the pharmaceutical company (Roche) and my private health insurance, who would be covering my private hospital day stay costs. I was waiting anxiously for my first treatment bill from Roche when my Oncologist called me to say my Private Health Insurance had agreed to pay the full costs (except the hospital excess) of the Tecentriq drug! Needless to say I was overwhelmed by both my private health insurance and my oncologist who completed all the paperwork. I've now had my first full round of treatment (3 weeks on, 1 week off) and can already feel changes in my neck. I don't know how long I will be on the drugs for, or how my body will react, but think it is important for others who may be in the same situation to know that if a drug is not yet available on the PBS, there still maybe ways of accessing it. Just as a side note, the trial I was referred to was stopped as it was using Tecentriq with Taxol and did not show any benefits to Taxol on its own. The previous trial to this for Tecentriq was with Abraxane which had shown a benefit - this is the combination I am on.
Recurrence in lymph nodes
Hi everyone, I was diagnosed with TN Inflammatory BC in late Oct 2017. Treatment was 5 mths of Chemo ( 8wks fortnightly A/C, followed by 12 weeks weekly Taxol) then modified radical mastectomy (rt breast and 3 lymph nodes) which showed only a tiny amount (1.3mm) of residual disease with excellent margins. There had been evidence of activity in the lymphnodes. Surgery was followed by 5 weeks radiation and then I had what I refer to as my bonus chemo - 4 months of Capecitabine (Xeloda). That all took me to Christmas 2018. Since then I have been feeling better each day and looking fabulous (according to my dear friends and family!). On an o/s trip in early June I noticed the onset of lymphoedema in the right arm - sad but not completely unexpected after the radiation. As soon as I got home I booked in to see my surgeon, who is wonderful and always says to see him asap if anything changes. He sent me for an ultrasound, having said he didn't expect anything sinister. Unfortunately the ultrasound shows at least three lymphnodes appear enlarged and diseased - I go back on Wednesday for a Fine Needle Biopsy, but the radiologist made it pretty clear she thinks it's not going to be good news. I have to wait until next Monday 22nd for the results and to know what I'm looking at in the way of further diagnostics/prognosis/a treatment plan etc. I know there's not much advice anyone can give at this stage, but am just having a little freak out and trying very hard to stay calm for my darling husband, so I thought you would all understand if I had a little figurative scream in this forum!! I am searching my self for the inner strength to do this all again - in some ways easier when you know what it entails, and in some ways so much harder for the same reason. Worried and sad, but trying to be strong. Sally
Information access on the Metastatic breast cancer information forum for those that can't attend.
Please can we get a video done and put up on the website on the sessions at the Metastatic breast cancer information forum that is happening in Melbourne on Saturday. I can't get there but I really want the info on the emerging strategies for metastatic TNBC. Surely in this day and age the technology is available and it's not that hard to organise. Members of BCNA include women from regional areas and those with serious health complications from treatment that compromises our ability to attend - surely BCNA of all people should understand how important this information is to us and how important it is to make it accessible. PLEASE - can we make this information available to those that can't attend.
Triple Negative Metastatic Lung
I was diagnosed with triple negative breast cancer stage three in Match 2017. I underwent chemo, a lumpectomy and radiation followed by a course of captectabine. I had a reoccurrence in April this year and I was diagnosed stage four with spread to lymph nodes in the mediastinum and right pleural. The cancer has also invaded the skin of my right breast which has resulted in a painful skin condition. I have had 7 chemo’s and self funded Keytruda (immunotherapy). The Ketruyda made me very unwell and seemed to stimulate disease progression. I now have lymphangitis carcinomatosis in my left lung and a pleural effusion in the right. Have had effusion drained twice but it comes straight back. I also now have a liver met. I am on a high steroid dose which keeps me mobile short distances but some days I require oxygen which I have at home. I have just finished my first round of a combo of avastin and a chemo drug navelbine. I am 42 years old and I have two young children. Although recently place under palliative care I will never give up and my Oncoligist is on board with this. I am looking to connect with anyone who can provide me with a positive story in a similar situation as some days I find it hard to find hope which is what has kept me going through all of my treatments. Thank you.
Lymph nodes
hi gals. Ive had my mastectomy 14mnths ago, triple neg, did 16 rounds chemo n 25 radiation. Got through it ok, now 6 mnths later, accute lyphodema. My arm is huge and painful and swelling across chest, dark burgundy/black patches on skin. Had scans galore and mri has detected cancer in some of remaining nodes. Going for PET scan friday. Wont know till next wednesday all gory details. So, my question is to anyone out there is .....has anyone had re-occurance of their breast cancer 6mnths after treatments and in nodes? Im getting all sorts of scary vibes, not quite saying, but basically, im stuffed by all involved. Id love to hear from someone that may have had similar situation. Its a long shot i know. Thanks for this forum that gave me a chance to vent at least. Cheers
Confused
My primary breast cancer 7 years ago was oestrogen + progesterone + and her2 - My metastases when found a year ago was TN My confusion is this: when I look for information on treatment and life expectancy on MTNBC all of the info I find is for BC that was TN to begin with whereas mine has changed. Most of what I have read says my life expectancy is 18 months which is crazy Is there anyone out there who have a similar situation to mine or with MTNBC who has well and truly lived beyond the '18 months'?
Immuniotheraphy - my last resort!
I have just begun an Immuniotheraphy drug (Keytruda) for mTNBC as I have hit the final wall without success after my beginning in July 2104. I have been on several chemos & I was on a targeted trial for TNBC last year and early this year that looked promising, but after 8 months the cancer has again spread this time to my lungs. I'm interested in contacting anyone that has trialed or is using an Immuniotheraphy drug.
