Did anyone attend the support group with Dr Starr Thursday August 7th?

Appreciate your response. Neither of them have been very helpful. I am not looking for what a specific person may have asked as a question. I was interested in what Dr Starr had to say. What was his view of histotripsy and when it would be best used. What the criteria might be that he is using. Since I registered early, I still do not know why I could not connect. There were some others that also had problems connecting last night. Thanks again.

@splendrous, Jennifer now facilitates the meetings. Please use this link to register https://mchealth.zoom.us/meeting/register/wcWv-MZNTAOg_NU5Xw8jLQ

I am working on getting access to the recording for registered members who were not able to access the meeting. I hope to have it by Monday and ask for your patience.

Feel free to reach out to me directly using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

Sorry, just following their rules but also trying to be helpful:)
IMO, he did not seem to be all that enthusiastic about histotripsy, relatively new. I believe he said they needed more research & it was usually only used in small, targeted areas. He did say Jeff Bezos has invested in the technology, so it may be the next big thing.
I can understand why his patients really like him, he is very knowledgeable & easy to speak with. Hope this helps!

Thanks very much for your efforts. I do appreciate whatever you can do.

Hi
There is certainly an issue with the old registration link still being “live” and the messages seem to come from Loriell, who is no longer moderating this meeting. This happened to me as well. But Jennifer is the new moderator ( others have posted her information earlier on this chain) and the confirmation should come with her name.
For those who missed the meeting, Dr Starr was great! He discussed the new drugs and treatment options that are coming up for NETs and he showed a couple of videos on histotripsy.
The meeting was not well attended.. clearly it seems many people registered to the wrong link. I missed seeing the old group! Hopefully we will sort this out.

Is there a way to watch a recording of Dr. Starr’s information?

Hi Colleen
Please send me a video of the meeting as well
I am very interested in what is in the works
So far I am 9 months out of my PRRT treatments and my tumors are still shrinking and are stable
But as we know that won’t be forever
That said I met with Dr Starr in Ft Lauderdale to get his feelings on what he would suggest I should do next and he agreed with my NET specialist PRRT.
And that is what I did
I would Greatly appreciate hearing what he thinks is the next step yet again
Thank you

@splendrous @sophiarose @midford @fraaseo @mimighosh @michellehcapouch and any other NETs Zebras Support Meeting attendees. I think I've got to the bottom this and all thinks should work as they should going forward.

The link has been corrected for future meeting announcements in the Events page on Mayo Clinic Connect
See upcoming dates here: https://connect.mayoclinic.org/events/?filter%5Bparent_event%5D=9493

If you are successfully registered and on the mailing list, you will have received an email from the meeting facilitator Jennifer Markowitz, LMSW LCSW (Markowitz.Jennifer@mayo.edu) earlier today.

If you didn't get an email today from Jennifer, please register here https://mchealth.zoom.us/meeting/register/wcWv-MZNTAOg_NU5Xw8jLQ

For privacy reasons, the meetings are not recorded. However, I have good news! Back by popular demand. 🙂

Dr. Starr will be joining the next meeting on Thurs. Sep 4, 2025. The meeting is from 5:30pm to 7:00pm ET. Dr. Starr will be available to answer your questions from 6-6:30 ET.

Thanks for pursuing understanding the problem and working to get it fixed. I have attended meetings in the past. Did not get a note from Jennifer today. I registered for Sept. Should I now get an email to register for the October meeting? I am just trying to understand.

I’ve been getting the same nonsense for the past 5 months or so. I have concluded that I’ve been blacklisted and that the individual who monitors the meeting is simply not letting me in to join the meeting. This makes me very sad because there is virtually no support whatsoever for Canadian patients. I would greatly appreciate an explanation as to why I am no longer welcome to join these meetings, which were so important to me.