Are you currently (or have you been) in a Clinical Trial?
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Susan this i exciting news. Thanks for giving us the heads up. How are you doing on your trial?
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Whoo-Hooo!!!!
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One of the great things about enobosarm is that even if it doesn't work on the cancer, it improves well being in the patient. Typical, common side effects, are a slight elevation of liver enzyme values (ALT). Benefits include improved energy, building of muscle and improving bone density.
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Thanks for posting, Susan! So glad to hear
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This is really exciting news- I did see that they were looking at radiologic improvement which makes me wonder if bone only mets will be included in this study?
a treatment that makes you feel better !!!
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Chico,
So far, no side effects except I seem to be sleepier. I'm always fatigued but usually not sleepy. Yesterday I took a nap during the day which I usually never do. My breathing isn't any better but that will take time. Overall, very tolerable!
Thanks for asking!
Hugs, Susan
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Susan good luck. Hope your worst s/e only involves you getting more sleep 😂 but that you don’t have to suffer another bad breakfast
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Has anyone heard of this https://www.verywellhealth.com/opdivo-nivolumab-uses-actions-and-side-effects-4144244
I met a women yesterday in my TNBC group on FB that is 5 years NED!!!!!!! She got the above immunotherapy back in 2016-17 and has been NED she didn't know if she is PDL1 pos. or neg (she didn't even know what that meant) has any one heard of this??
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Good for her!!! Opodivo (Nivolumab) is one of the checkpoint inhibitors, same as Keytruda, and there is also Atezolizumab (TeCentriq)...
Though the earlier data seemed Atezo was strongest, more data from lung cancers say otherwise, and :
"In particular, the PD1 inhibitors nivolumab and pembrolizumab (Keytruda) could be pre-
ferred options for patients with higher tumor burden or symptomatic disease, to whom the decrease of tumor volume represents a primary objective. Nivolumab seems to be generally
better tolerated than the other two agents. "0 -
I've heard of this drug but not for breast cancer. In fact, I skimmed the article and it doesn't say it's approved for breast cancer. Is she getting it off label?
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She got it in a trial I believe and has been NED since..2016-17
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That's the wonderful thing about checkpoint inhibitors, if they work, you can go on and on, taking nothing for the cancer. Jimmy Carter took it in 2015, at age 91, for melanoma mets in liver and brain, and that cancer is now history...
https://www.cancerresearch.org/en-us/join-the-caus...
For MBC, Barbara Bigelow and Judy Perkins got apparent cures from immunotherapy, tho in those cases, they had ER-positive cancer that had switched to ER-negative, those cancers are far more sensitive to immune attack
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Jimmy Carter took keytruda, not opdivo. But yes, it has worked wonderfully for him.
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Sorry ladies wow I feel like a JERK...I never realized that "check point inhibitors" are Immunotherapy.... *bows head..and shakes head*
The problem is I am terrified now of Immunotherapy - keytruda bc of what happened to BevJen...
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Nicole,
I think that immunotherapy is a larger tent than just checkpoint inhibitors. And I don't know if my experience would be the same for everyone -- from what my doc said, what happened to me happens "sometimes" but not always. Every drug has side effects, and I guess we never know until we try them how each will affect us individually.
I am still a believer in immunotherapy, because I think that if you can train your body to fight your cancer (or whatever disease) that's the best outcome that you could have. It just doesn't always work, unfortunately.
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Nicole, FWIW, hyper-progression from checkpoint inhibitors, as BevJen had, has been seen more often in people who have tumors that carry EGFR mutations, with an incidence around 20%, and higher in people with MDM2 amplifications (50%) or MDM4 amplifications (67%). Tumors with DNMT3A alterations also appear to increase the risk. For lung cancers, they found that if it was going to happen it would be right away, ie, nobody got hyperprogression after they had response, or after discontinuing the drug. In some trials where checkpoint inhibitors were used in combination with chemotherapy or PARPi or other immunotherapy, the rate of hyperprogression was less, for example in one study as monotherapy there was 18% hyperprogression but dropped to 4% when checkpoint inhibitor was combined with a CTLA-4 inhibitor. For now, the main thing known is to avoid checkpoint inhibitors, or go for a combo trial, if you have those genetic mutations listed above..
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BevJen, One thought about hyper-progression was that the checkpoint inhibitor could be stimulating tumor-associated macrophages to better hide the tumor in those cases, and if so, it might be possible to use checkpoint inhibitors when combined with drugs like the PY314 to remove the TAMs. The drugs are now being tested on people who progressed on immunotherapy, but I wonder if they are or will try it on people who got hyperprogression...
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Cure-ious,
Thanks for that information. I am absolutely guy shy now about checkpoint inhibitors after what happened to me. I looked at part of my record and I don't see an EGFR mutation listed nor the other two. So something else must have been going on with me.
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BevJen, I would absolutely be as well!!! You were lucky they caught it right away and knew what to do! But, perhaps in the near term there will be some more definitive answers and a safe way forward, if not with checkpoint inhibitors then some other kinds of immunotherapy.
I was just reading of other confounding issues MD Anderson identified that could confer risk to checkpoint inhibitors, especially if the absolute lymphocyte count is under 1,800 cells per mL, if one has been taking chemo these could be out of range and these are cells required for the response.
- Absolute lymphocyte count under 1,800 cells per microliter [hazard ratio, HR = 3.3]
- ECOG performance status greater than 1 [HR = 2.81]
- Elevated neutrophil count greater than 4,900 [HR = 2.3]
- Elevated serum lactate dehydrogenase (LDH enzyme) greater than 466 [HR = 2.1]
- The presence of liver metastases [HR = 1.8]
- Elevated platelet count over 300,000 [HR = 1.8]
- Age of over 52 years [HR = 1.59]
https://www.mossreports.com/immune-checkpoint-inhi...
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Also, a new report testing checkpoint-induced hyperprogression in mouse models with human colon cancers suggests the problem is linked to p53-defective tumors, independent of MDM2/4
https://pubmed.ncbi.nlm.nih.gov/34676046/
Regarding the use of combination therapies, here is a report of a 67-year-old woman with mTNBC who was treated with Keytruda plus chemo after multiple lines of chemotherapy treatments. "After 2 cycles of treatments, she rapidly developed hyper-progression, as confirmed by radiological evaluation and worsening symptoms. At that time, the Keytruda was discontinued, and she switched to the PD-L1 inhibitor atezolizumab plus chemotherapy. This patient partially responded to atezolizumab plus chemotherapy without experiencing severe drug-related adverse effects. This is the first reported case of metastatic breast cancer in a patient with radiologically confirmed hyperprogression after Keytruda therapy in which successful rechallenge with atezolizumab relieved clinical symptoms."
So it is possible to go on and respond in some other context. Some reviews also point out that hyperprogression has been seen with chemo or other therapies, but less frequently (5%) than with the checkpoint inhibitors.
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Hi all.... Alabam. Dee wanted me to let you all know she misses you all!
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As many of you know, I had a bad experience with Keytruda. It did nothing to reduce my cancer and, after I stopped it, I developed grade 3 oral mucositis for a year and a half. My whole mouth was covered in swaths of sores. At one point, I was really scared because it was painful to even drink water and I couldn't use a straw because I could not purse my lips to form a seal. I was put on a lot of steroids that finally gave me relief. I was only on Keytruda for three months.
My mantra has always been, "Just try it, if you get bad SEs, you can always stop". Well, I didn't have this option with Keytruda. I don't have any of the mutations or amplifications. At that time, the only thing I match up with on that higher risk list is that I was over 52. I was 55. I know that Keytruda and Opdivo have transformed the landscape for melanoma and kidney cancer. I am hopeful that MBC immunity treatments will be developed at some point. We are just not there yet.
Hugs, Susan
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wow Susan you just scared me straight into not wanting immunotherapy. I had mouth sore issues with ibrance and then a year ago had oral shingles and I have been on 1 pill a day of valtex since thats for maintenence. What is oral mucosis sores? Did they give you valtex first when the sores first started or just straight to steroids
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I don't remember taking Valtex just using, I think, triamcinolone topical cream before going on steroids. I didn't have individual sores, just swathes of irritated tissue on the inside of my cheeks. I have photos but don't think anyone wants to see them.
Hugs, Susan
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Susan, That's horrible, wow!! We just assume the drugs they put out, at least the ones that have been around in trials as long as checkpoint inhibitors have, they know how to deal with- never even heard of that problem..
How are you finding the HER2 ADC?
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re immunotherapy: I got 21 months on atezolizumab with no major SEs. I think it's pretty rare to get a really durable/permanent response. Most of the trial results indicate the majority of responders eventually progress. So just like the tumors evaded immunity in the first place, they learn to evade it again.
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Moth ...thats sad....except that woman I wrote about here...and well...Judy Perkins.
When I talked to my MO a few months ago immunotherapy she told my husband and I..."Just beware immunotherapy is great but it does and can come with side effects...especially the "itis" ie: pancreatitis...etc"
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I feel like I should comment here just so that people reading along and considering immunotherapy might hear also about a Keytruda experience that was more positive. I know that some of you have experienced some severe side-effects and I totally get why people are nervous about trying immunotherapy. I was too! And, I'm really glad that the research is beginning to identify some of the factors that might lead to adverse effects like hyper-progression so that those at high risk for such effects are aware.
I was on Keytruda (with Herceptin) for more than 2 years and I was fortunate to not have any of the serious adverse side effects. I had previously progressed on Herceptin/Perjeta and on Kadcyla and I had to stop Abraxane due to increasing neuropathy. (Enhertu wasn't yet approved when I started Keytruda).
I was given Keytruda because of a high tumor mutation burden and thus far, it has worked for me. I have been NEAD since my first scan after starting the drug. My MO and I recently decided to drop it due to dosing guidelines that are, apparently, moving towards stopping at 2 years. And, because I was beginning to feel that the cumulative effect was taking a toll on my entire body. So, in a sort of “quit while we're ahead" strategy, for 2 months now I have been on just Herceptin. I get my first post-Keytruda scan in another 10 days and of course, I'm super nervous. Will I have a hyper-type progression after going off? I don’t know. It was scary going off of something that was working but to give my body a break (albeit still on H but without P) after nearly 7 years of treatments feels pretty good. It's likely a temporary state of reprieve but I'll take it for however long it lasts. I’ll keep you posted.
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Margarita,
Thanks for sharing your positive experience! Hope your scans show continued NEAD.
Hugs, Susan
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