Are you currently (or have you been) in a Clinical Trial?
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nicolerod - So sorry to hear. Sending lots of love for your consult with the NIH. Enhertu is pretty powerful. Maybe it will work well enough to knock things back so that you can qualify for another trial?
Have you ever looked into oncolytic virus trials? Here is an example (tumor size might be an issue but maybe a larger tumor would make it easier for them to do the injection?):
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Jsniffs…I currently take Methionase…its really expensive though thousands of dollars a month. I had done a fund raiser for the TM drug and so when that failed I used the remainder for Methionase. I get it from Dr. Hoffman in CA at the Anticancer center. I try to eat low methionine but its very very hard.
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@nicolerod - Oh interesting. I didn't realize/remember you took Methionase.
My understanding is that SGN1 takes targeting methionone pathways to a new level, based on this article:
SGN1 can target the tumor because of the amino acid metabolism, and the destroyed cancer cell fragments may also trigger an immune response that sets off a chain reaction to target other tumors in the body. I think the injection of SGN1 directly into the tumor aids in affecting the tumor, as tumors often wall themselves off.
I think I saw other oncolytic virus trials that are testing results with and without Keytruda.
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So we literally spent ALLLLL DAY at the NIH… we got there at 6am and left at 4pm…it was a LONGGGG day. They did blood work and then a MRI of liver…then lots of waiting…. then we met with them. So far they do see a tumor in the liver they can resect. There was sooooo much information. For those that have not been following this is the TIL trial. Ok… so this is a very very very high risk trial..with little, very little chance of reward…but yes, if you get the reward, if it actually works, then you have your life back. Some of the things I am worried and scared about:
- you have to be in the hospital for 20 days while they completely WIPE out your immune system with chemo… (so during this you are very susceptible to infections).not to mention how your body will even handle that chemo etc.
- They give you immunotherapy Pembro which if anyone knows the side effects of immunotherapy they are all the "ITIS's"… Pancreatitis , pneumonitis…etc… not to mention other things.
- You can be eliminated at ANY point literally even after they take out your cells (which that process intails 6 hours with a HUGE thick metal needle in the bend of your arm drawing out the blood and keeping the WBC's and then another needle in the other arm to return the blood. If your veins cant handle it then they have to put a cathedar in… and NO they cannot use your port..they explained why but I cannot remember it all.
- I did ask if there has been any success with anyone that is TNBC..and they said yes..but its small… they did say how you can go through all this literally risk your life and it might not even work.
So they will officially let me know Monday if I can go ahead and get the surgery which they tentatively scheduled already for May 17th. BTW if I agree…then we meet with Dr. Rosenberg…
I am praying for the Father to give me discernment and to give me a clear leading I am so torn and I do NOT want to make a decision based on fear. The surgeon did tell me that he is really surprised at how well I look and how I am being how many tumors are in my liver and to him that shows that I have a pretty good immune system. ….
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Fantastic, Nicole, freaking f'ing fantastic!!! So very excited for you!!! Checkpoint inhibitors do not scare me, Jimmy Carter took Keytruda years ago at the age of 93, and it got rid of his liver and brain melanoma mets and he has lived another 8 or so years to now be in hospice for old age, we all want this, so yes there are possible complications of course, but for many it has been easy. And chemo wipe-outs of the immune system are common in stem cell transplants, etc. And mostly, mostly, mostly, this is the #1 by far most experienced group at this therapy, they have been working so hard to get the time frame down and 20 days of exquisite care in the hospital sounds to me like a very good idea for you right now, no more surprises, etc. I so hope you make their cut. We know this approach has been best for those who converted from ER-positive to -negative, and there are hopefully no more bad surprises… You know what is best for you, but it is great to have options.
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PS I detest the new site, of course, how stupid that we waited a year for this? Have to dig to find the Stage IV only thread…
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PPS Correction, Carter took Keytruda 7 years ago at age 90…
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CURE…. very important that you know that Keytruda working for Jimmy Carter is NOT a surprise and actually very common (they explained this to us)…. ya see Melanoma cancers respond BEST and have the MOST success rates with Immunotherapy… they said like 50 to 60% have success. Where as, BC, Colon and Pancreas have like 15% that is a huge difference. AND…I am NOT PDL1 positive (which helps) although they said they are not sure that matters…however I can tell you that everyone in the FB groups I am in that have TNBC and use Pembro and are PDL1 Positive have success and those that are PDL1 negative are not…so to me, it matters. Also I cannot find anything on line that says that Judy Perkins receptor flipped as a matter of fact I read a Q&A she did and all she mentions is that she was ER+ HER2- and that she did an immunotherapy and success for 6months before doing Dr. Rosenbergs trial that got her to remission….. ???
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@nicolerod - I'm so happy that this is an option for you!!!!! I applaud your tenacity. Sending lots of prayers. I also have some mets that converted to triple neg and are not positive for PDL1, so I also have high interest and hopes in what you are doing.
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Curious…I forgot to also mention that Judy Perkins was PDL1 positive..hence why she had such a high success….
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Nicole - this is huge at least to even have a shot at this after being rebuffed so many times BUT as you lay out in the post, lots of risks and big decision. I hope you find the most comfortable choice for your circumstances and needs - we are all cheering you on regardless.
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Hi Nicole, Yes, of course Melanomas and lung cancers carry many more mutations and so are most responsive to immunotherapy than MBC, what I meant was the side effects of immunotherapy would not put me off from trying it, given that someone like Carter was able to handle it at age 90…
There are subgroup analyses from trials indicating that those who converted from ER-positive to-negative are more responsive to immunotherapy than either of the starting types, although I haven't seen a molecular or biomarker analysis showing why. Some cancers, like those with CDK12 or SF3B1 mutations are reportedly more sensitive to immunotherapy despite having low PDL1 or tumor mutation burden, so we need better biomarkers.
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Nicole, thanks for sharing your experience so far with the TIL trail. I am so glad you got your foot in the door finally, but it sounds like a complicated trial and understandably a very tough decision. I've been interested in this trial since I am not responding to any chemo treatments anymore.
I just got back a Foundation 1 report and I have 63 mutations - yes 63! - in my big liver tumor which is 80% ER+. I tried Keytruda about 6 months ago for 3 months and it did not work for me. I was PDL1+ from a lung tumor that is TNBC which is how I qualified. Of course, the Foundation 1 report said that Keytruda was the most likely to work for me because I have 63 mutations and that was based on my ER+ liver tumor which grew while on Keytruda.
I assume I would not qualify for the TIL trail since I tried Keytruda unsuccessfully?
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Nicole, I just want to add my thoughts and prayers as you navigate this. I know this will be a difficult decision but I’m thrilled that you potentially have this option available to you.
I had to laugh at your comment Cure-ious. I also detest the new site. It’s horrible to navigate and very difficult to read. Probably one of the worst web sites I have ever seen. I find myself using it less and less which comes at a particularly bad time for me as I have exhausted all options and the disease is progressing. What a mess….0 -
Sadie..I am so sorry to hear that you are progressing…are they completely out of treatment options? Do you have a lot of liver tumors?
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Hi Nicole. Unfortunately nothing left for me as I don’t respond to chemo. It’s the double edged sword of having a slow growing cancer. I got about 4 1/2 years on hormone treatments but once I became resistant chemotherapy wouldn’t touch it beyond some success with Xeloda. My liver is huge which impacted my kidneys. I had to have nephrostomy tubes inserted to keep them functioning. At this point they don’t really monitor the progression but I’m dealing with a lot of fluid build up. Last scan there was some ascites which seems to have increased. Cancer also spreading in my right lung which makes me super short of breath. Fun times.
Keep fighting!
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Oh Sadie :(. I am so sorry. I believe I am chemo resistant too….
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Pat
So sorry to hear your news. I was concerned about you, but had not been able to find you on this miserable site.
Your posts were very helpful when I joined a year ago and I thank you for them.
I wish you peace and comfort.
Hugs and prayers,
Eleanora
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Thank you both. I don’t want to hijack the thread but wanted to say that despite everything I am still managing well in many ways. It’s the slow growing nature. Of course things can change quickly. Nurse was warning me about potential issues from my liver. Apparently she feels I’m showing some jaundice in my eyes. Not sure as it’s subtle but I do know my liver enzymes are elevated.
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Dear Nicole, you are a pioneer in our threads. TIL trial is still the highlight of clinical trials. With this I wish you all the best and that you'd heal!
Dear saddiesservant, no matter how difficult it is to navigate here, just write anywhere and we'll answer. I am so sorry for your progression. Can you hope to try newest ADCs - chemo is crazy effective in them, many times more effective and targeted than conventional chemos?
Hugs, Saulius
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OK … looks like I am going forward with the NIH trial..here is the message I got:
Hi everyone agreed it was reasonable to move forward. So your surgery is booked for 5/17, but you will be admitted on 5/16 I believe. As we discussed in the clinic its important to remember that there are a lot of ways that this treatment gets derailed by something along the way. It happens not infrequently. I’m not trying to be pessimistic, but I just want your expectations to be managed for that possibility. We are going to do everything in our power to get you to treatment safely. So, we will see you next week!
I will be going in on the 15th of May to have my blood extracted (the white cells) its a 6 hour procedure and NOT an easy one…then go back on the 16th and be admitted for Surgery the 17th.
I am concerned bc I think my liver may be in the beginning of failure…bc for the past 2 days I am extremely fatigued and I NEVER EVER feel like this… :(
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excited to hear about this Nicole! I really hope it works!
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Wow Nicole, that is great news about the TIL trial - I am very happy for you. I remember reading Judy Perkins' posts (on Inspire) back in 2015 as she went through the gauntlet of steps. Of course I hope you will have the same success.
Sadiesservant - please keep posting, I appreciate your updates but I'm sad to read that your discomfort is increasing. I hope you are still able to get out with lovely Sadie.
A quick update on my end, I made it past the first scan (at 2 months) for the clinical trial of the novel CDK2 and CDK4 inhibitors (NCT05262400). Nothing got worse (liver, pleura, pericardium) and my side lesion shrank noticeably (ick, yes, cancer had grown up my old Pleurx scar). I've had to have a dose reduction for the CDK4 inhibitor because my blood counts tanked, but it's a relief to now only have to travel monthly not weekly to the cancer centre.
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SadieServant, I am gutted to read your news, are there options in other targeted drugs, let us know if we can help research anything…
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Here is a short video from a young physician at the University of Montreal discussing TILs therapy, he trained with Dr. Rosenberg at NIH and also at MSKK in NYC:
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Dear Nicole, that is good news, congratulations. 16th is close. One step at a time, we are with you!
Dar Newgardener - that is good news too. Shrinking is what we always hope for. 2 months is not a long time, so let's hope after next scan they register even more shrinkage.
Dear Cureious, wow, what a video… had to drop all my work to listen to it. Dang, like always, lucky mice… I have listened to several Dr. Rosenberg's presentations but this one is very interesting because it overviews historical steps to these revolutionary treatments. Thanks!
Hugs to everyone,
Saulius
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@nicolerod - Best of luck!!!! We are all rooting for you. Sending lots of positive thoughts!
@sadiesservant - Sending you lots of positive thoughts as well. Is Travera testing (travera.com) an option for you? As nicolerod saw, they identified possible drugs options that hadn't been considered before. Also, I believe they have more experience testing malignant fluids. I tried to do the Travera testing with breast tissue, but they didn't receive enough live cells to complete any of the testing. I likely will try again if there is an opportunity.
@newgardener - That is great that it sounds like you are having good results. Thanks for sharing your experience with the new trial.
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Sadieservant, I am so sorry to hear about your state. Can you try something like low dose metronomic chemo, where they give you an oral like cytoxin at such a low dose it doesnt cause sides, but has a potential impact on the cancer? I've read that lose dose metronomic can have an effect outside of what the normal chemo effect would be, it impacts other pathways that the cancer cells rely on. I've also heard of iodine being used as an enhancer of chemo. Please forgive me for these suggestions if they are unwanted.
Nicole, I am glad to hear you are eligible for the trial. I will contineu to pray for a miracle.
Newgardener, I am praying for your success.
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Thanks Husband
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Nicole best of luck with this trial. Praying this works for you. I’ve reached out to them over the years…last year they said no because of my plueral effusion. Did you ever use Iver? I’m adding Keytruda to Trodelvy and want to add Iver but was wondering about the dose. I’m going to get cyberknife to T8 as soon as I can to help the Keytruda.
I’m doing Travera for my biopsies tomorrow. I learned of it from a Metavivor presentation. It’s good to see some hear used it. I’ve been off the boards but I’m going to try and keep up now. The new format is awful.
Saddieservant I’m sorry to hear your news.
Thanks for posting that video Cure.
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