Slight update / new info: Hi guys! Hope... - Melanoma Caregivers

Melanoma Caregivers

Slight update / new info

kellyOd
kellyOd

Hi guys! Hope you all are doing well during this time. I know I am getting stir crazy. I’m a restaurant worker that’s been out of work since March 16th. No end in sight here in Maryland. Ryan is doing well! He’s cruising on a good plane right now. We are happy with Keytruda and the relief he has received from it. Not sure what’s going on inside since the last PET scan but I’m hoping it’s keeping it at bay or still continuing to shrink! (Best case scenario)! His thyroid function has not been rechecked yet, but some of the symptoms have been getting better at the low dose he’s on - will recheck in 3 weeks. Kidney function was slightly high so have been directed to drink plenty of water to try and flush.

I have come across an awesome new drug! Given I haven’t done my complete research into it yet. But I’d love to share in case someone is curious as well. Relatlimab - a new immunotherapy drug that has a different target. Most of the immunotherapy drugs out are PD-1 inhibitors. This one targets the LAG3 protein. If anyone has any more info or has looked into it deeper please share!!!!

Be safe everyone and much love from MD

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missyrand
missyrandAmbassador

It must be very stressful to be out of work Kelly, but I hope this has given some flexibility to spend more time with Ryan and the family. For a lot of folks I know, there seem way fewer hours in the day because of the increased demands of homeschooling children and loss of daily/ weekly structure.

Good to hear from you today from Maryland.

Virginia is still going very slow until or unless the Gov. opens before the June 10 date. Easing restrictions starting today for medical and dental appointments should give us a little breathing room in the Commonwealth.

Peace,

Missy

kellyOd
kellyOd in reply to missyrand

Hi missy! Oh yes, I applaud those parents homeschooling. It has to be hard on top of work for those that are essential. My boy just turned 5 and doesn’t start school until the fall so I haven’t had to do that. Wow! That’s a huge step. Our governor has been pretty strong feelings of keeping everything relatively shut down to the best of his ability until after our peak. Our numbers are still climbing. I’m glad Virginia is opening slow! The states that do that will help the rest of the country by example. Glad to hear from you and thanks for the targeted therapy article! I found that very informative considering that was an exact situation we were in. Xoxo

Hi Kelly,

Everything has grinded to a halt here in CA. People are really starting to revolt in so many different areas of the state. Our Governor Newsome is a nut job.. lol. Supposedly we may start a soft opening on 5/15🙏🏻🙏🏻

Sorry to hear you have been out of work, I know so many people are struggling. Since I work for a Dr. I am essential, so luckily I am still working but more abbreviated hours.

So glad to hear that Ryan is doing well. Love hearing good news. Mark is doing good as well. Had a set back the last couple of weeks, but back on steroids and seems to be doing a lot better again.

Mark has his CT Scans on 5/27 so I will ask his Dr about the Relatlimab, and if it’s something that Mark could benefit from. Thanks for the info.

Michele

Glad Ryan is in a good space Kelly.

I work in a hospital though not in direct patient care. Have been excessively careful not to bring anything home to Tony to extent that I spent 5 nights sleeping in our trailer while waiting for Covid test results of co-workers who had direct exposure. Luckily all but one were negative so back to normal (to the extent any of this is normal)

Stay home and stay well. Watch Corona Virus Explained on Netflix.

So glad Ryan is doing better now. Here in Michigan we are still at home till the end of the month at least. Working from home, grateful to have a job.

My husband was in the fase II/III trial that had relatlimab. It had one arm with nivolumab only and the other arm was nivolumab + relatlimab, double blind so we never knew what he took. I don't know if it is already approved and used outside of trial setting.

Love

Dorothe

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