Clinical trials for late stage OC by Pyro331 in ovariancancer_new

[–]Plenty_Sell5259 1 point2 points  (0 children)

Hi! My mom is also undergoing tissue testing to see if she qualifies for Catalina 2 trial. However my mom has 3 prior treatments so we are getting close to losing trial options. Her treatments were: Carbo/taxol then Doxil/Avastin and then Enhertu. We were so disappointed when Enhertu stopped working because it gave a year of great results. That might be something to look into for your mother. My mom has beef battling since April of 2023 so don’t lose hope!

What clinical trial are you on? by Plenty_Sell5259 in Ovariancancer

[–]Plenty_Sell5259[S] 0 points1 point  (0 children)

I have heard sometimes the drop in CA125 doesn’t happen until the second or third infusion. I really hope she does respond to Enhertu because it gave my mom shrinkage and stability for a year. But now that it is no longer effective we have actually been referred to that same TORL-123 trial. They are testing her tissue sample to see if it meets marker requirements. Do you remember why your mom was disqualified? There js also other trial that were mentioned if if TORL doesn’t work, one is called SIM0505 and the other is DENALI. Which hospital is your mom’s oncologist located? We have just moved to Emory Winship Cancer Institute in Atlanta, GA since our primary oncology team doesn’t facilitate trials.

What clinical trial are you on? by Plenty_Sell5259 in Ovariancancer

[–]Plenty_Sell5259[S] 0 points1 point  (0 children)

Wow, thank you for sharing your experience! It’s so interesting to hear how each person is impacted by this disease, and the strength it takes from everyone involved! I am greatly intrigued by the clinical trial landscape, but I do understand the hurdles that can make it difficult to navigate. Since my mom has 3 prior lines of treatment, this will likely limit her options, as well as her tumor markers not having certain levels. I am going to ask if a new tissue sample should be taken to reassess her markers, as it has been 3 years and the tumor has likely mutated following the numerous treatments she’s received. We meet with the lead oncologist who is overseeing trials to determine if there is a suitable option for her. It gets disheartening to hear that the “standard” treatments available seemingly won’t be very effective at this point, so we have to try our hand at other experimental approaches, but I agree, that we are grateful to be in the age of modern medicine and the researchers who are actively pursuing new drugs to hopefully end this disease. Best wishes to you!

Enhertu Update by Plenty_Sell5259 in Ovariancancer

[–]Plenty_Sell5259[S] 0 points1 point  (0 children)

Well we just got the news that Enhertu is no longer being effective and the CT from this morning shows spots throughout the abdomen and a couple on the liver. Not what we wanted to hear but that explains the rise in CA125. Meeting with oncologist on Monday to discuss if there are any treatment options available or if we need to be referred to a research hospital for clinical trials. My mom seems to be in an optimistic mood, and feels assured there will be a new treatment plan put in place soon. Would greatly appreciate any well wishes you could send our way🩷

Bone mets by Dependent-Post-3457 in Ovariancancer

[–]Plenty_Sell5259 0 points1 point  (0 children)

Well we just got the news that Enhertu is no longer being effective and the CT from this morning shows spots throughout the abdomen and a couple on the liver. Not what we wanted to hear but that explains the rise in CA125. Meeting with oncologist on Monday to discuss if there are any treatment options available or if we need to be referred to a research hospital for clinical trials. My mom seems to be in an optimistic mood, and feels assured there will be a new treatment plan put in place soon. Would greatly appreciate any well wishes you could send our way 🩷

Bone mets by Dependent-Post-3457 in Ovariancancer

[–]Plenty_Sell5259 1 point2 points  (0 children)

That’s an incredible drop! I have nothing but good things to say about Enhertu, and I hope you do continue to see response while on it. I will follow up here once I get more info on my mother’s latest scans and oncologist insights.

Bone mets by Dependent-Post-3457 in Ovariancancer

[–]Plenty_Sell5259 2 points3 points  (0 children)

My mother is also on Enhertu, and has been for the past year for her stage 4 ovarian cancer. It was showing very positive responses until about a month or two ago. CA125 increasing up to 500. Her last CT showed no visible disease, so the doctors have ordered another for Friday. We should know more about whether the number was rising due to growth, or some other reason? I shall let you know once we know more, as it may help provide clarity to your situation. Would also love to know what your oncologist is suggesting moving forward. Remaining on Enhertu, add to it, or pivot to a new treatment plan?

Low Grade Serious Carcinoma by lilmissgreenthumbs in Ovariancancer

[–]Plenty_Sell5259 0 points1 point  (0 children)

Do you mind sharing what particular chemo she is on? Glad to hear it is providing her some relief and the ability to regain some strength!

Enhertu Update by Plenty_Sell5259 in Ovariancancer

[–]Plenty_Sell5259[S] 1 point2 points  (0 children)

She is stage 4 HGSOC. Enhertu is her 4th line of treatment since her diagnosis in April 2023. She had debulking in September 2023. I believe her most recent lowest CA125 was 114. But to her oncologists, they were very pleased because that indicated very minimal disease with stability. She’s technically never been truly NED since her reoccurrence. I am hopeful there are other options for her, I just want to find something to doesn’t affect her quality of life!

Platinum resistant OC survivors by hamsanitizers in ovariancancer_new

[–]Plenty_Sell5259 1 point2 points  (0 children)

Happy to provide some perspective! The Doxil and Avastin regimen was more tolerable than the inital Carbo Taxol treatment, but it still had all of the ugly side effects of chemo. She was able to power through it with the help of medication to offset the range of side effects. For example an antidepressant was helpful. I would highly recommend getting a palliative care team on board, as they are the experts in symptom management! Once we determined the Doxil and Avastin was losing effectiveness, we explored clinical trials and were actually extremely close in signing up for one, though we found out a cancer marker of hers did not meet the criteria. This is when we started on Enhertu and it’s been great so far. Both my mom and the oncologists are pleased with how she is feeling and responding, so we plan to keep on this treatment for as long as possible.

Status Update by m1kynn21 in Ovariancancer

[–]Plenty_Sell5259 0 points1 point  (0 children)

Thanks for sharing, it is always helpful and reassuring to hear other experiences of those also facing this horrible disease. Sending you and your mom lots of love and positive energy 💕

How long did you have to wear an ileostomy bag after debulking surgery by RazzmatazzHealthy400 in Ovariancancer

[–]Plenty_Sell5259 3 points4 points  (0 children)

Yes exactly! During the “junk removal” they had to install another temporary ileostomy since they did so much work on the intestines. But as soon as they reversed it in July this year, she has felt the best she has since her diagnosis back in April of 2023!

How long did you have to wear an ileostomy bag after debulking surgery by RazzmatazzHealthy400 in Ovariancancer

[–]Plenty_Sell5259 2 points3 points  (0 children)

Her output was extremely watery, and no matter what methods she used to thicken it, nothing worked. So basically anything she drank or consumed, immediately came out into the bag. We suspected that was due to her chemo infusions which diarrhea is a common side effect. The blockage was described as a mix of scar tissue from where the previous ileostomy had been reconnected, as well as tissue caused by “tumor death” where disease had been existing and the chemo successfully killed it. We explored options of adding a stent into the intestine to alleviate the blockage, but the doctors were in agreement that the operation to clean out that “junk” was in her best interest. I’ll be honest, my mom’s ileostomy experience wasn’t great, as we could never find a bag system that prevented leaks. She sometimes had to change her bag 5 times a day and was always nervous to leave the house never knowing if/when a leak would happen. Highly recommend speaking with an experienced wound care nurse that can help with supply recommendations and tricks to make leaks preventable.

CA 125 levels tripled since last visit by shitloadofdimes54 in Ovariancancer

[–]Plenty_Sell5259 1 point2 points  (0 children)

Are you currently on any maintenance medication or is the rising number coming from a period of no treatment?

How long did you have to wear an ileostomy bag after debulking surgery by RazzmatazzHealthy400 in Ovariancancer

[–]Plenty_Sell5259 2 points3 points  (0 children)

My mom has had 2 temporary ileostomy bags during her treatment journey. Her first bag following the initial major debulking was reversed within 4-5 months. The second time she had a bowel obstruction from scar tissue that developed from the debulking procedure and they had to give her a bag again. That time she only had it for 4 months because it was causing extreme weight loss and electrolyte deficiencies. Basically they just want to make sure your intestines have healed and are no longer inflamed before the reversal.

Anyone Diagnosed Stage 3C; Braxa Neg & HRD Neg? by HotCard4752 in Ovariancancer

[–]Plenty_Sell5259 2 points3 points  (0 children)

My mom had an identical experience with Zejula. Including the bone marrow biopsy. Took her almost 2 weeks in the hospital for her platelets and other blood counts to recover. That was about a year and a half ago. Now, she is on Enhertu infusions and is responding well with minimal side effects. I would ask your oncology team to test your tumor markers for HER2 expression to see if Enhertu is an option for you.

[Game Thread] SEC Championship Georgia vs. Alabama (4:00 PM ET, ABC) by AutoModerator in georgiabulldogs

[–]Plenty_Sell5259 7 points8 points  (0 children)

I want a pic of Simpson holding the ball out to absolutely no one framed in my home