Triple Negative Stage IV
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@moth I did not mind the port being put in at all. If you have any questions pls ask.
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Scan results said a few more spots on spine. I’m so discouraged. I see MO tmrw. He had mentioned a pill. Anyone else have this but then it got better? I feel so lost.
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Oh dlittkeman, sorry the scan results suck.
Update us with what your MO said - xeloda. Are you on anything else?
Wait I see you posted on the stage 4 ned. That's for people who were dx stage 4, had treatment and are now no evidence of advanced disease. Is that you ? Or were you stage 3 NED & then showed mets...
I'm having a down afternoon. Read some PubMed studies on survival and now I'm angry at that "life doesn't end at stage 4 dx (really!)" thread. It's misleading. Sh have a big asterisk saying does not apply to tnbc. Seriously, unless we get a huge response from immunotherapy, our numbers suck
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@moth. I posted on wrong board. I’m still on the immunotherapy drug and now xeloda too. Praying this works. TNBC is scary.
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dlittkemann - interesting combo! Hope.this one does the trick. Did you have all your mets sites biopsied? Read in the archives yesterday about people having different hormone expression in mets in different locations. Opened up treatment options.
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Hi Cure_ious
I was diagnossed 12 years ago IDC stage 2 ER+ PR+ .I was in compelet remision and my onc told me that Im cured. But unfortunetly after 12 years its came back in my bones some lymph node and right ovary . And right now my new biopsies shows im tripple negative . Started chemotherapy with abraxane and carbo. My onc told me tha i would be a good case for immunetherapy . But unfortunately im living in the poor countery IRAN. The govrment and insurance didnt pay for my treatment . And immunotherapy in my country cost alot that i cant afford it . Im so so depresed and my onc just give me 9 month to live . ( sorry my english speeking is not good ).
You are really fortunate that can get immunotherapy .
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@moth my MO says hard to biopsy bone? But I will insist I’d get to that point. I too have read TNBC can turn to hormone positive at times. That would be a gift since opens up a world of treatments.
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And
ish,Aargh, that is awful!!
I hope their are organizations or cancer support groups there that can get drugs to you, and how about petitioning the drug companies directly?!
Hopefully others familiar with these problems will come along some good advice
is it possible to get access to clinical trials in Iran?!
PS Also, a chemo and immunotherapy combo is especially promising for ER-positive cancers that have changed to ER-negative
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Andish, welcome to the board. Your English is great! Unfortunately access to some immunotherapy drugs is an issue in many parts of the world. I'm in Canada and currently get immunotherapy through a clinical trial. Otherwise it's not covered by our health insurance. Maybe a trial is an option for you? Roche and other companies run many international trials with sites all around the world.
Fwiw, I think your MOs estimate is very negative. I spent a large chunk of yesterday reading stats on metastatic tnbc survival and while overall they are not great, they're more positive than what he said. Abraxane and carbo are excellent hard hitting chemo. Fingers crossed they work for you.
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thanks Cure_ios
How can I send a message to pharmaceutical companies? Which company should I send a message to?ROCHE ?
Unfortunately, there is no medical trial in Iran.
My onc mentioned that the best treatment for me is immunotherapy.
In Iran, the dollar is very expensive. And immunotherapy drugs are very, very expensive in Iranian currency.
Unfortunately, we in Iran are not even able to buy the drug erlibulin (Halavan). It costs us a lot.We can not afford it.
I wanted to send a message to Mr. Bill Gates and told him to Please help me pay for the medicine. But I think he will never answer me.
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Hi moth .
Thanks for replying my post .
Yes, I know that treatment is very expensive in the world, but in some parts of the world, their insurance covers medicine for them.
Or they can receive immunotherapy through therapeutic trials. Unfortunately, none of these solutions exist in Iran.
Medical trials that are available in different parts of the world for immunotherpy Do I have to pay for it? Or is it free??
And that in order to participate in these medical trials, I have to have a place to live in that country I want to go to. And i think its cost me alot that i cant afford it .
Living conditions in Iran have never been good. But with US sanctions against Iran, the situation is getting worse and worse. So that we are not even able to pay for medical treatment and also no medicine enters our country.
I hope that abraxane carbo work for me .
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Hi moth .
Can you please advise me how I can access medical trials? How can i get information about the clinical trials??How can I find out about the location of clinical trials?
Does it cost a lot to me ?? I need youre help .
Please share me youre expirince
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Andish, you can try looking here https://www.breastcancertrials.org/BCTIncludes/ind...
Roche (manufacturer of atezolizumab) and Immunomedics (manufacturer of sacituzumab govitecan) are the companies to watch. Those are the 2 promising imnunotherapies for tnbc. I'm in a trial run by Roche.
Apart from trials, some companies provide what they call "compassionate access" to medications where you can get the medication for free. There are lots of criteria to qualify but you could try contacting them to ask if they have that program in your country.
Trials are free. Costs might include travel if you need to get to the center. I don't pay anything to be in my clinical trial.
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Just waving hi. Hope everyone is ok0 -
hello all - I received this from one of the many email lists I am on and I thought it might be of interest to the TNBC ladies here.
Looks like a free one hour virtual conference and here is the link and the description. Take care ...and what a cute puppy, moth. I'm waving back
Using genomic research, JAX scientist, Francesca Menghi, Ph.D., wants to identify better treatments for patients diagnosed with triple-negative breast cancer. Join Menghi and Mark Adams, Ph.D., Professor and Director of Microbial Genomic services, and Deputy Director at The Jackson Laboratory for Genomic Medicine, for a virtual conversation about how future research can empower oncologists with a much larger array of therapies for their patients.
Thursday, September 24, 2020
12:00 PM - 1:00 PM (Eastern Time)0 -
For NEW diagnosed metastatic triple neg, a clinical trial of Trodelvy compared to Trodelvy+Kaytruda.
Through Dana-Farber
NCT04468061
https://clinicaltrials.gov/ct2/show/NCT04468061
You must not have had any chemo or immunotherapy in the metastatic setting & be PD-L1 negative
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Good evening all,
Firstly, I hope that everyone is doing well.
I was wondering if I could ask for some non medical advice. I am currently on cisplatin/gemcitabine since June, I had an emergency ct in July (for non cancer related issue) which shows shrinkage in lung nodules and mediastinal lymphs - treatment was working. I had a recent ct this week showing things to be the same as the July scan with an additional 3 lung nodules one being 1.7 cm and 2 new vertebrae lesions.
Right now my oncologist doesnt seem eager to change treatment. More of a we will keep going until things get worse. Well, I did that the first line of treatment and things got bad to the point where I wasnt sure I was going to live much longer.
My question is, if this was you, would you stay on treatment, find a clinical trial or request another treatment option. This is my second line within 6 months.
Thank you so much for reading/responding. Sending everyone well wishes.
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Sf2008, I'd be afraid to offer an opinion between the two options based on my own lack of knowledge. Can you get a second opinion?? That's surely what I'd do under the circumstances! Good luck!
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My rule of thumb is that if you don't feel comfortable with the treatment plan, you have every right to question why they are choosing the path that they are. If the reasoning doesn't sound right to you - trust your gut instinct. If that means a second opinion, then that's what it means. You should be able to trust the plan and your Dr. and if you are questioning it, they should be able to tell you what to expect. It could be just as easy as them saying, let's give this treatment another month or two and then we will look at options. I wouldn't be comfortable with them saying let's stick to this plan until whenever. I would need to know what "whenever" meant. Please remember that medicine is supposed to be a service industry - they are providing a product to you that you are paying dearly for - you should be comfortable with your care.
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Sf2008,
I agree with the other comments. You have to be at peace with your treatment plan as well as your oncologist. There is enough anxiety with a cancer diagnosis that you shouldn't be going home uncomfortable with a treatment plan.
I see you are in Ontario, where is your oncologist? My wife Liz is at Princess Margaret.
Grant.
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Sf2008, so essentially you've had progression in ~ 8 weeks? I think I'd want to know more about the MOs plan here. Could be he's really hoping you stabilize here but that seems um, optimistic... When is your next scan scheduled?
What was your 1st line?
Honestly I'd probably be pushing for a trial but I'm not sure what. Are you close enough to Montreal to consider the Trodelvy trial TROPICS-02?http://www.canadiancancertrials.ca if you search for sacituzumab, it shows up
ftr, here's the list of treatments I compiled a few weeks ago:
CHEMO
Taxol (paclitaxel)
Abraxane (nab-paclitaxel)
Gemzar (gemcitabine)
cisplatin
carboplatin
Xeloda (capecitabine)
Taxotere (docetaxel)
Halaven (erubilin)
Navelbine (vinorelbine)
Ixempra (ixabepilone)
IMMUNOTHERAPY
Tecentriq (atezolizumab)
Keytruda (pembrolizumab)* see post immed below for reference to study
Trodelvy (chemical name: sacituzumab govitecan-hziy)
This 2016 article is interesting though because it brings up anthracyclines - including our old friend adriamycin aka doxorubicin aka red devil. Many MOs won't give it in metastatic setting because previously treated tnbc pts usually had it in early stage treatment .... BUT turns out there's a way to mitigate the cardiac risks "With regard to the management of cardiac toxicity in clinical practice, metastatic patients who are responding to and tolerating therapy but are approaching the upward limit of the cumulative anthracycline dose (ranging from 450 mg/m2 for doxorubicin to >900 mg/m2 for epirubicin) can be considered for the iron chelator dexrazoxane. By reducing the number of metal ions that complex with anthracyclines and subsequently decreasing the formation of superoxide radicals, this agent can be used to reduce the risk of anthracycline-induced cardiac damage."
A Review of Systemic Treatment in Metastatic Triple-Negative Breast Cancer by Simon B. Zeichner, Hiromi Terawaki, Keerthi Gogineni
https://journals.sagepub.com/doi/full/10.4137/BCBC...
so I'm adding that to my list as well. The article also discusses some complementary chemo pairings vs. monotherapy.
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Thank you to everyone who responded. Having cancer has been rather lonely.
I started with abraxane and atezolizumab, from March to May, I had rapid progression on that treatment.
Then I moved on to cisplatin gemcitabine in June to now.
I am BRCA positive and have been considering going to Toronto for an Olaparib clincial trial.
I have phoned my oncologist asking for a second opinion at princess Margaret and sunnybrook
Sometimes its better when I hear it from other people as well. Thank you all so much. I appreciate all your input.
Thank you for the list. Will be of great help.
Sending you all well wishes.
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Sf2008, oh girl yes, PARP inhibitor might be excellent for you! Good for you for pursuing a 2nd opinion. I hope you get appts quickly!
editing to add: something you might also want to consider is more genetic testing. Have you had Foundation 1 done or Tempus or one of the liquid biopsies? Something to hopefully identify another mutation to target through a trial or an already approved med. But the Olaparib sounds like a great idea given you're brca+
Hugs
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sf2008-
Agreed on as much genetic testing as possible. Good luck, and keep us posted!!
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sf2008, Liz is being treated at both Sunnybrook and Princess Margaret. She has had excellent care at both centres.
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Hi lizo husbend . How is lizo doing ??how long lizo has brain mets?? She continous biclutamide alone for her treatmen? Is it work for her؟؟ thanks in advance .
Im like lizo i was hormone positive 12 years ago and now tripple negative.
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Hi all,
I wasn’t really sure where to post my news so far it’s early in my journey but thought a bit of a ray of mTNBC news is always a good thing.Im on Tecentriq and Abraxane just had my three month scan my professors words on seeing me were I was dreading your scan results can you let me examine you... I have been thinking things are going well and voiced this thinking i couldn’t be wrong... she started her examination and lit up actually smiling and really excited... she said I had to check it was as good as the scan looked as I couldn’t see anything really on it so my hands are a better judge... she said my results are fantastic and my thyroid has dropped as the immunotherapy is doing it’s job, hence my three month semi cold and erratic periods and ear block!!
She couldn’t feel my left lymph, the lump in my right breast is soft and what I thought were my skin mets are eczema she thinks. Her plan is six (well five more chemos as I had one yesterday) then maintenance immuno!!!! I questioned her on whether more chemo treatments would be better but she said the chemo is the primer and it’s done it’s job so to avoid building up unnecessary toxicity’s or resistance it’s better to stop and let the immuno do its thing!!!! I had some serious pain in my breasts just before my scan and the lump went really soft I now wonder if it was the cancer leaving my body like a growing pain (that might be my ever optimistic mind at play!). She has agreed for me to get mistletoe therapy alongside my immunotherapy and was impressed that I nipped neuropathy early tingles in the bud with magnesium and a blend of essential oils including sacred frankincense.
She said the words we all want to hear “just keep doing what your doing as it seems to be working well” I pray to god this continues for as long as possible is mTNBC seem to get very little respite from cancerland but I feel I can breathe if only for a short while!!! My nurses said when Tecentriq works it’s a miracle drug!!!
Praying god smiles kindly upon me and this continues
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lulabelle, awesome news! Tecentriq is working for me as well right now (though I'm on it with taxol in my trial). Are they calling yours a regression? I had stable on my first 8 week scan - some lesions shrank, some swelled but over all load was same; regression on 16 and 24 week scans. I have my next scan on Oct 23.
Tell me about the magnesium. Are you taking it oral and how much? I use it occasionally for muscle cramping but could start using regularly as an additional neuropathy prevention. I'm icing like crazy & only using B6 now; dropped L-glutamine early on as my liver enzymes were climbing and we didn't know if it was the mets, the taxol or the L-glutamine or acetaminophen...so we dropped the last 2 to minimize factors.I had a small bit of neuropathy starting in the summer but it's actually getting better now. I attribute it to my enhanced icing techniques.
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Thank you Moth,
I'm so happy for you the trial seems to be the key for you and your success is long term which is again brilliant. It is my professor did the impassion 130 (I hope I got that right) and she's a lung and breast specialist so got really excited!! She never says things like NED or too much about diagnosis however she did say it's regression as my lymph node now has to be dug out to find it was huge maybe almond or bigger is now a grain of wheat on a bad day. My breast was bright red hard, inflamed and angry with lots of orange peel skin all pretty much gone it's a bit like a deflated balloon which apparently is signs of regression. I'm praying this is do and I manage to get the full wonderful effects of Tecentriq as she did say it doesn't always work but when it works it works for a long time generally (never have I hoped to be in that category so much!!). She seemed amazed at my results which I guess is positive and that she wants to drop the chemo although that also scares me as any change does in our world!!! I'm hoping the mistletoe therapy has a positive effect as after an initial intensive sessions I can do it at home subcutaneously which would be nice!
I had neuropathy during my first line treatment but was never told that's what it was so had it off and on for three years again came up with hormones!!
I take a really basic vegan magnesium oxide 500mg tablet at night, where I also rub a blend of coconut, broccoli and almond oil mixed with sacred frankincense and about 15 essential oils (ok I know excessive but I'm a bit like that) into my feet, hip and breasts.
I've hear icing is really good and you sound like you know what your doing with it. Due to my low thyroid my hands and feet are always freezing I was thinking I'd have to start icing but hopefully what I've done has worked and I'm guessing it's less likely when I drop chemo.
I take turmeric, garlic, ginger (one supliment) wheatgrass, super mushroom complex in the morning with half a litre of water that's been in a charcoal filter. I've tried to avoid adding more as I wanted my three month first and am sticking with my random concoction until I need to up the anti!!!
I wonder if we get to full on Ned and stable at it if they will put us forward for the TNBC vaccine trial? I watched a video where an oncologist in the US had fine this and get lady was at 4.5 years NED with mTNBC can you imagine the joy!!!!
*edited to add that I have an agreement with my professor that I will run any supplements, Essential oils, dietary changes or alternative treatments and she agreed to keep an open mind unless there is a serious risk of harm* She did advise lots of protein and not to lose anymore weight in case I need it for treatments down the road as it can help to be normal BMI if a drug saps your weight it can be the thing that stops it as your body is too weak. She wanted to drop my dose due to losing 6kg in three months I pointed out this was in the first month and my weight is now stable she has agreed to keep it where it is so long as I keep my weight the same as it is... I had some baked waffle fries with beans that day the first potatoes I’ve had in three months. I’ve refused to have cow dairy or beef but have agreed to have the odd organic free range egg or bit of sheep’s cheese, fish or maybe chicken if needed more than anything I just don’t want to get weak as she is right I need to keep strong for the long haul!!0 -
Sf2008, any.news on your 2nd opinion appts yet?
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