TNBC Vaccine Trial?
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I definitely did not get a PCR. Most of my tumor was still left with 8/15 positive nodes. We were totally shocked as my tumor hadn't been palpable since April and was no longer showing up at all on ultrasound. They never thought my nodes were involved. I am super high risk for it coming back, and frankly really blessed to be NED right now. There are not a lot of options out there for people like me, and even less that guarantee you will get medication. I have had a really good feeling about this trial since I first came across it, so unless I hear another really good option not to do it- I am moving ahead. From my research other than chemo there appears to be 3 kind of approaches they are taking with adjuvant treatment after chemotherapy- immunotherapy like Keytruda, looking for a receptor they can target like AR, or a vaccine. My doctor preferred the vaccine because she thinks it will have a lasting effect- whereas drugs that target a receptor may not work after some time, and that the immunotherapy drugs seem to work better on someone who has a solid tumor (which is why it's approved for stage 4). On a side note- folate receptor alpha is also present in other cancers, so this vaccine may also help prevent us from getting other cancers like ovarian cancer or lung cancer.
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Thanks, Sam0623! You've got a great attitude about your plan. You go girl!!
Btw, I read on here someone saying that if we do this trial we won't be able to do any other immunotherapy in the future. I asked my onco and he said that's not true. He said it will depend on a lot of different factors and the technology is constantly evolving.
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Hey Supr!
I had adjuvant chemo so can't speak to neoadjuvant, but my latest scans were NED. So far, so good. Wishing you luck!
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I'm starting the Tapimmune Folate Receptor trial on Monday, Oct 30th. I'm in the chemo arm so I'll go back on Thursday for the first injection. The clinical trial coordinator at my treatment center, Dubin Center/MT Sinai in NYC, said that they have almost filled the slots for the trial. At Dubin they have several patients who have completed the 6 month injection period and the coordinator said that they all did well re side effects.
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I am starting this trial on Monday, Oct 30. I was told that I am one of the last ones, and that it will close this week. Not sure if that's true for all locations, but the trial is filling up in Texas. I am traveling across two states to get treatment. The nurse and doctor told me that they are seeing "some positive results" and minimal side effects. I can't thank the women/men of these boards enough for posting this information. It saves people's lives. Will keep you all posted and would love to hear how others are doing. So grateful for the resources and information on these boards!
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I heard back last week that I didn’t qualify for the trial. One of the blood tests called an ANA panel (antinuclear antibody) came back at 640 positive, which is well over the 80 “normal” level. This test appears to show that I have an autoimmune disorder. So, now I get to start down an entirely different path. I like to think thingshappen for a reason, and that the good Lord has a plan for me. I was saddened not to get into the trial and I wish you all the very best! You are pioneers on the new frontier!! God bless! ✨🙏🏻✨.
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Strange but true, I got a call from the clinical trial coordinator today. They had retested my blood samples and the ANA panel came back at 80 (vs 640?!), so they asked if I was still interested. I said yes, and the coordinator did my random selection - high dose with the initial chemo. I start 11/13/17 with the chemo and 11/16/17 with the vaccine. Crazy, huh?
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SuprSurvivr, the exact same thing happened to me. My original ANA results disqualified me, and they retested, and then I got the go-ahead. I was told by staff that the trial is now closed, so you and I must be the last ones to get in. I was randomized to the low-dose vaccine, and so far the only side effect is some slight swelling and itching at the injection site. I cannot express enough my gratitude for these boards for providing the information about this trial. I was told that "it's showing promise" and is also being tested for ovarian cancer.
Would love to hear updates about how the trial is going for others, and any news or experiences. And so glad it worked out for you, Supr.
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Wow! So it wasn’t quite so strange. Well, I’m glad we both, and the others on here, have made it in to this trial.I’ll definitely post about my experiences as we go. Reading others’ posts thru all my various treatments has been so very helpful too. I like to think I’m doing my part. 🤗.
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I did my cytoxan infusion on Monday and I've had a few side effects from that a little similar to the side effects during AC but milder since the infusion was at 50% strength. Yesterday I had my first injection of the vaccine--I got the low dose. I've had no reaction to that--just a tiny, tiny red dot but no itching, swelling, rash, etc. Best wishes to everyone.
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aterry - if you don’t mind my asking, what were your side effects? When I did AC, I got really nauseasous, so I’m really curious and a bit anxious about the chemo treatment. We are driving 3 hrs back home after and I’m scheduled to work the next day.
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Thanks for the update, Aterry. I hope all goes well for you, SuprSurvivr.
Lyn
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SuprSuvivr, I'm sorry for the late reply. My reactions to the Cytoxin were similar to what I experienced during AC but not as severe. I was woozy, tired, slight headache and chemo brain (but I've had chemo brain for a solid year so that wasn't new). I did NOT have mouth sores or bad sore throat that I had each week during AC. There have been no SE's related to hand & feet or nails or hair. At the injection site even the red dot is gone so I think the rest of the treatments should be uneventful. I hope your experience has been positive.
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Thanks for the info, aterry! Yeah, fatigue and nausea were my worst. Well, thankfully it’s only once. I appreciate your helpful heads up. Good luck to you!
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I have had an unusual side effect which the clinical trial coordinator believes is from the cyclophosphamide in the injection prior to the vaccine injections. I have lost the hair on my legs again. It has been gone approximately 3 weeks which was after the 2nd vaccine injection. The hair on my head has not been affected that I can tell and trust me, I am watching that closely. This is the first time the coordinator at Moffitt has had this reported to her. I was just concerned that this was a sign of something I should be concerned about so I emailed the coordinator who forwarded my email to the dr. in charge of the trial. They assure me this is nothing to be worried about
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Thanks for the update, Connie1230! If I recall, leg hair was the first to go for me the first time around. Maybe it’s the body’s weakest and most suspectible to the chemo. I’m with you on the hair watch plans! After a year, I’m feeling pretty attached to it, as I imagine you are too
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Yes, I am attached even though I feel like I have set a record for slowest growing human hair in history. It is also gray....which is no surprise as I colored it for years. The hair on my head went so fast and I really don't remember which was first. This is one of the side effects of cyclophosphamide according to the trial coordinator. I will be curious to see if this happens to anyone else. Losing the hair on my legs and not having to shave was the one and only positive of having this disease....LOL....so as long as the hair on my head isn't affected, I'm goodwith this.
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Hi, Connie1230! Mine came back totally grey, too, and I’ve been coloring it since. I debating staying grey,but I’m 49 and just wasn’t ready yet. I think one of the worst parts about the first round of chemo was loosing my eyelashes and eyebrows. Those were the last to go, and while I’d really hate to loose them again, if it meant keeping the cancer away, I’d do it!
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I will be 68 by the end of the month. Strangely, I had been thinking about just letting it go gray when I was diagnosed so that decision was taken out of my hands. I don't know if I'd have done it or not because I feared looking like a bird pooped on my head while it was growing out. Having a hairdresser take it to gray is a very long (like 6 hr process) or so a friend told me. I think I've decided to just keep it gray but that decision isn't etched in gold. At this point, I just wish it would GROW. I know it is growing but it really seems to be a much slower process for me than most
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Connie1230 - do you take biotin supplements? It helps with hair and nail growth. I take 10,000 mcg per day. You can find it at Walmart or any grocery store.
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yes, I do take it and at that dosage. However, the first bottle I had was a smaller dosage.
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On 11/13, I received the cytoxin treatment and in 11/16, I received my first high dose vaccine for the trial. The chemo made me pretty nauseaous, even with the zofran they gave me before the chemo was administered. And, my fatigue levels went back up. I’m also wondering if an uptick in hot flashes relates to the chemo or maybe just some increased overall anxiety with the start of the trial. The nausea and fatigue continued off/on for the next week. The vaccine was given in three shots on my forearm area. The first day, they were red and swollen; the second day, my arm was kinda stiff; and in the days since, the shot areas have gone to bruised looking. Other than this, I haven’t had any side effects from the vaccine that i can tell.
My clinical trial nurse says there are 22 trial participants at KU Cancer Center in KC, Kansas, where I am going. She also said the trial was now closed.
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I'm surprised. I am receiving the high dose with the 3 shots also. All I have for side effects are itching and redness in the arm for an hour or so.
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I had my second injection yesterday, 11/29. There was pinkishness and a slight, very slight, swelling of an area the size of a nickel. The redness went away within 1/2 hour and the swelling in about an hour. No pain or rash or itching. Now, second day, there is just a tiny red dot at the injection site.
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For the ladies that were interested in this smaller trial, but weren't able to get in before it closed it looks like the larger study through the Mayo Clinic is finally recruiting patients! (NCT03012100)
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Oh, crud.....I would so much rather be doing this trial at Mayo Jax. While I think Moffitt seems to be a wonderful cancer center, I am just closer and more comfortable with Mayo since that's where I've gone from the beginning. I go back to Mayo in January and will have to ask although I realize it's too late for me there
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I had my third shot on Friday. The same reaction as last time--a slight pinkish raising at the injection site that went away after 2 hours and then just a tiny red dot. No other side effects, at all. Since I joined the trial toward the end of the rather small cohort, I think many participants have completed the course. I'm glad to hear that the Mayo study is gearing up.
Happy New Year!
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thanks for checking in aterry! I’ve had two cycles and I go in for my third on Jan 11th. I have the same reaction as you, just at the vaccine site. I have developed a little rash on my left knee, about half the size of a dime. I can’t get it to heal after a couple months now. I went to my PCP and she’s referred me to a rheumatologist. So we’ll see. Literally no other side effects. Good energy levels.
Happiest of New Year’s to you all
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How many shots do you get? I wouldlove to join the Mayo Clinic trial, but the closest location to me is 6 hours away.
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Hi, rdeesides - I was randomly placed into the chemo then high vaccine dose group. I got a onetime mid dose of cytoxin, and now I get three shots of the vaccine monthly. The regular dose of the vaccine is two shots. I’ll get 6 monthly shots, then shots every six months until the 3yr trial period is over.
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