Do any of you know about this? And if so, any opinions?
Sometime I find that people want to save me, so they give me suggestions and such, about how to cure myself. It really gives me the screaming *#&@‘s.
So I’m just wondering what all of your think of this.
I read about this a while ago. Promising start. I think she was the only one it worked for in the study. How lucky is she? One day...
Thanks. Yes I saw that it was from June 2018 and wondered if it was working..... how come I hadn’t heard of it.
It was in the news but not a headline.
I asked a top oncologist about it who worked with the doctor who did it. He said Immunotherapy is extremely hard on the body because after they extract your cells they want to grow, in essence, you have to do IV chemo again to kill your entire immune system before they can inject your own cells that they grew in a lab back into you. They only do it as a last resort for ER+ patients because they typically respond very well to hormone inhibitors already. I found his response helpful.
I'll be more excited when it works for more than one person. With more research it may happen. I heard that Israel has been doing research, as well as some others. Continued prayers up for us, hope everyone has a good week.
Immunotherapy has been shown to work well for some people. It would be nice to see a study involving more people, especially those with MBC. Meanwhile I agree with you about people pushing their cures at you. I know they mean well, but......!!!
Hi Timtam56! How funny, someone sent me a link to this exact same article. I was just diagnosed in May (straight to stage 4 at age 38), and all the advice I get from people is overwhelming. It's difficult to have to keep telling them, "This treatment won't work for my type of MBC," or "That's for lung cancer, not MBC." Then all the conflicting diet advice on top of that--again, from people who aren't dealing with MBC themselves--and I want to scream.
However, I researched this, and found that it did actually happen. Here's another article about the same breakthrough: survivornet.com/articles/th.... I've bookmarked it because it's nice to know some of us might get out alive.
I've looked into the immunotherapy trials, and they are generally for triple negative MBC patients (I'm ER/PR+ and HER2-), but they will let you join if you're hormone receptor positive and your cancer has become hormone therapy-resistant. As an inclusion criteria, you need to burn through at least one, if not two, treatments. Like hopenowandtomorrow said, it's often a last resort for hormone receptor positive MBCs. I read that this only works for 14% of the patients, and I think this woman is the only one to appear to be in complete remission, but I hope that scientists don't get discouraged by the lack of results and abandon their research.
Thanks so much everyone. Yeah. I find it very intrusive when people also send you links to things that’s seem to be miracle cures etc.
And I have to be nice to them and I don’t feel like it. Sometimes I just feel like telling them to mind their own business! 😫😫
Not that I’m sensitive or anything! 🥴😁
I guess they just think I spend my life trying to find a cure.
Mostly, am just living my life! Having as much fun as I can and trying to forget all this stuff whenever I can!
And michiana_jones, bloody damn thing you have got going on at your age! I hope you’re getting the best treatment and that you’re not in too much pain.
Timtam.
Timtam, the "miracle cures" are the worst, aren't they? If consuming nothing but beet juice would cure our cancer, nobody would die of it anymore. It's also hard to hear, "They've made so many advances in breast cancer research, you'll be fine if you just stay strong and fight." Strong women die of breast cancer every day. I think they just say those things to make themselves feel better.
And thanks for your kind words. We're all gutted by this diagnosis. Discovered I had the CHEK2 1100delC gene mutation, which snuck down through my dad's side, so blindsided us all. Thankfully I'm asymptomatic at the moment, so my only pain is caused by side effects from my meds, not my cancer. My doc says it'll be a clinical success if I survive 2 years, but I'm going to prove his lazy butt wrong and live much longer, if I can afford it.
Wishing you all the best!!! x
It breaks my heart you are so young with this dx. I pray for successful treatment for you and many , many more years! Damn cancer.
Mariootsi, thanks so much. It's been an absolute nightmare, but I keep telling myself that crying all day in bed isn't good for me, and I need to prove my doctor wrong and do better. So glad to have found an online support group for patients with MBC, though I wish we could all meet under much better circumstances. x
Me too!
Michiana.... wow. That’s very full on for you. All of it. And then for your doc to say that. My doc wouldn’t give me a time line. Until I pushed her for it. Then what she told me has changed because I did so well in the 1st year that she reckons my “time” is more not less. So..... I do know there are a lot of people here, and I’m not just saying it to make you feel good, it’s true, who are doing very very well on the ibrance and letrozole concoction. And some have moved on to other mixes and are still going very well. So I suggest you ask people here lots of questions and think of getting a second opinion.
My general practioner freaked me out with my first diagnosis.
Firstly I was miss diagnosed for at least 8 months of feeling back and rib pain.
Then after pushing this new doc for a ct scan, and did I have to push her for it. ... she basically told me my life was over and cried.
So I sold my house and all my belongings thinking I would be dead in a few months. But this medication (I don’t know what you’re on) is working. I have been stable now for one year and about four months.
Ask these women questions.
I don’t know if you have yet or not.
But you found the right place.
Go well and take loving deep breaths into your beautiful body that may look after you better than that doc says.
Timtam.
Timtam,
It's wonderful to hear that you are doing so well, especially after they gave you such devastating news! This is why I joined some online support groups--I needed to hear from MBC patients who are defying the odds. I've found the right place for sure. 
It's very sad that we all have to advocate for ourselves so much, but I'm glad we do. Like you, I had to demand a PET/CT scan, otherwise we wouldn't have known it had already spread upon initial diagnosis. Sometimes I wish I didn't know.
I nearly sold my home too, but I just bought it a few months before my diagnosis, and it's my very first home (maybe my last), so I couldn't part with it just yet.
I'm on Ibrance, Letrozole, Lupron shots to chemically put me in menopause, and Xgeva shots for bone building. I just finished my third cycle of Ibrance (125mg), and I'm already on my second break from it due to grade 3 neutropenia, but I do think it's working. My first PET/CT since starting treatment showed that the bone mets were barely visible and my breast tumors were reduced by two thirds. Or maybe that's the work of the hormone therapy and not the Ibrance? I'm certainly feeling like a cash cow, being put on all this medication, but I'll continue with it while it works.
Thanks again for all your encouraging words--I look forward to chatting with you more! x
Hi Michiana - Late response, but wanted to mention that I've had "grade 3 neutropenia" (averages around 800) for almost 5 years, never took a break, never reduced from 125 mg, and have had no problems at all, not even a cold. I mention this only because my personal bias - unmoved by scientific studies that a lower dose is just as effective (! ) - is "the more, the better!". In fact I have a two month stockpile of Ibrance so I do occasionally take an extra one, for good measure!
Be well,
Lynn
What a story you have, Timtam! The power of self-advocacy!! XXOO
Every single day I see an article online that this or that causes cancer and this or that cures cancer. Remember Steve Jobs. He was diagnosed with pancreatic cancer but the "good" kind as most times that when found, it is already way advanced. Doctors told him he would need chemo and radiation but he was against that. With his millions, he went overseas and tried all sorts of clinics and juicing and whatever new cure was in another country. He started getting worse, not better and returned to US. By that time he no longer had an option for chemo and radiation that would have given him many more years. It was too late. Towards the end you saw how gaunt he was. He was giving an interview to the man who would be writing his autobiography and he said his biggest regret was that he did not listen to the US doctors and that he tried all these "new cures" overseas as he now realized he could have had many more years.
This research is super encouraging. Just hope they do larger trials quickly so maybe it can help us!
I'm praying. I believe in miracles!
The way I think of it years ago stage iv cancer was terminal and quickly. Now, we have all these brand new drugs that make it more of a chronic illness and give people a better quality of life and for much much longer. Years from I expect that they will have even better forms of treatment. But when once disease is finally eradicated, another one arises. So I think we are lucky that we have these drugs compared to years ago. I don't know why some women still consider it terminal where I have read women living for years with stage iv. And congrats to the women who agree to participate in these trials. The lady I know was on the Ibrance trial and is now on her fourth year with no progression and she still holds a full time job. That is something.
i think people mean well don't they but it's never quite so simple is it. If it was, none of us would be on here seeking support from each other. I've had the same sort of thing, "oh I read Joe Bloggs was cured by eating apricot seeds, you should try that....." #rollseyes . Like I say, good intentions but it makes you feel obliged to look into it or prove your point why it's not suitable. All very wearing.
With regards to the link, nothing definitive, but all very encouraging. Hopefully, there'll be more studies and reseach to come and hopefully in our lifetime the Big C...... cure that is . Best wishes. Josie x
So true mindysooty.
Odd. I find it almost the opposite. When I was diagnosed stage iv, friends were calling constantly and now it's been a year and a half. And when they see me they will say you look great, you don't even look sick and little by little friends stop calling because they think Oh, she is really not that sick. Unless they see one is 90 pounds and has no hair, they cannot see or understand how the medication makes us feel NOR do they really want to know some of the side effects So I like forum boards for the support in seeing that other women are having the same sort of side effects. I remember when I was on the Ibrance. I thought I was imagining it, but I could smell the stench of my urine much more and then I thought I was imagining it until I went on a forum board and several ladies were all saying the same thing. It made me feel better for whatever that is worth.
What I found to work with people wanting to send me cures is to ask for them! That stops them right in their shoes. Early on, people asked what they could do for me. So my response was, please find me information on break through therapies for ER+/HER2- breast cancer. For those who would look, it educated them on what I was going through and also let them know that there aren't too many. But there are some. And that's better than it was 20 years ago. Plus, on occasion, I would find out about new things out there!
Diamags, that’s brilliant!! Hope you don’t mind if I steal that tactic?!
PFS?
Hi Sandra,
So sorry to hear that you are also metastatic de novo. It's terrible that we don't even get a few years of hope, thinking we might have this thing beat. It's hard to believe one's life can shatter into pieces so quickly.
They've got a long way to go, but I think there's some possibility in immunotherapy. It's being studied by legitimate researchers, but it's by no means a miracle cure, that's for sure. Immunotherapy clinical trials want the patient's cancer to become resistant to hormone therapy before being eligible, OR the patient should be triple negative, which receives no benefit from hormone therapy. I believe Judy Perkins was at the point where her cancer had stopped responding to treatments and she had no more options, and that's why she joined the trial. I certainly hope no one is abandoning conventional treatment that is working in favor of an investigational drug/procedure.
An oncologist I met with at University of Michigan explained to me that our cancer can change over time. It learns a way around the treatment, so someone who is hormone receptor positive, could later become hormone receptor negative. Same with the HER2 protein. When/if our cancer changes, we may become eligible for treatment plans that weren't available to us before, or vice versa.
Wishing you all the best, as well. x
Sounds like promising research, despite the pros and cons. The fact that it is being used in many other cancer types is also promising!
Hi Timtam!
My sister, who has triple negative MBC, was considered for this immunotherapy (sp?) by her ("our") onc, who is the head of clinical trials at Duke, but she did not qualify because she was actually "quintuple" negative, not sure what that means, but her cancer profile did not meet the requirements. I'm always concerned that my cancer is no longer hormone receptive (my results over time cause this concern....e.g. a very slow but steady increase in tumor markers and tumor avidity via scans, basically unaffected by switching treatments, which one would expect to push everything back for a while, right?). Anyway, I've recently engaged her doc, in part so that I might be a candidate for this new treatment, when/if the time comes. Thanks for sharing the info...even if it helps just a couple of us, it's great to know!
Take care,
Lynn
The lady in the article is Judy Perkins, who went into remission after an incredibly complex treatment involving TIL. Some have called her an outlier, and "exceptional cure". The TIL technology seems to have stagnated, as I have not been able to find news on its further development.
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