Not great update

[kellyOd]

We had his PET and brain MRI on Monday, and we saw his oncologist today to get the results. We also had a surprise Doppler ultrasound for a “cramp” he had in his left calf. Turns out, not a cramp. Blood clot in his mid calf. Which is definitely not what me and Ryan expected. He is now going to get an injection in his stomach to get rid of this clot. It is good that it isn’t near his heart, and these rarely dislodge. Anyway. The MRI of his brain was beautiful. The edema that has been present since his surgery is actually decreasing, even as his steroids have gone down. As for the PET, that was worse. The lesions in his mesentery have gotten bigger, and have increased in number. And his liver now has a measurable met. Course of action is to stop the carboplatin and taxol, and start on a chemo pill called temodar. Take it once a day for five days, and rest for 28. I am full of emotions. This was a hit.. just wanted to update..

Love to all

[missyrand Ambassador]

We are also looking at temodar, so let's keep in touch.

Good thing the doplar was done. Does this impact Ryan's ability to fly at Christmas?

How are you doing managing this ongoing and increasing stress?

missy

[kellyOd in reply to missyrand]

Absolutely. Let’s keep in touch. I’ve read some positive things. We aren’t really going to travel a whole bunch. All of our family is local. But it truly feels like a Charlie horse to him so it makes it hard for him to walk sometimes.

I haven’t been managing too well actually. I cry for a few minutes, then I start to read. Research. Take my energy out that way. Plus I have 6,000 other things going on it life that demand attention. So, really, I just keep moving. Keep busy. Not sure if that’s healthy; I’m sure it’s not. But for now that’s how I’ve been getting through 😕 how is Wayne?

[Hidden]

Soo sorry to hear about liver.Have my second Keytruda infusion today.am praying for all of us.

[missyrand Ambassador in reply to Hidden]

Good job with round 3. Praying for effectiveness for you

Missy

[SGHSweethearts]

Kelly,

Wow! Ryan has a lot going on. Was his leg really hurting bad to get the ultrasound, don’t know if Mark would know to complain? That is great they found the clot and can take care of it.

Great news that the MRI of his brain was a positive news.

Sorry to here the PET scan was not such great news. The temodar, I’ve never heard of. Why only 5 days and then off 28? Is it really a powerful drug? I sure hope Ryan tolerates it well, and this take care of his new mets.

How is Ryan doing Mentally & Physically? I hope he is feeling ok during all this and is able to get out and enjoy life.

Mark has been in bed all week. Really sick with the flu, hope it’s nothing more. We visited the grandkids for Thanksgiving and they were sick so think he caught a bug. I should have had him wear his mask, but I let my guard down. He has his scans on Monday so we are praying all is still going ok with him.

I am sending you both much good thoughts and prayers. I can only imagine the emotions both you and Ryan are feeling. I understand trying to stay busy to try and keep your mind focused on something else. I know it’s in your head every waking moment. I hope you are able to get out with a friend even if only for coffee. Sure wish I lived closer.

Michele

[kellyOd]

I’m sorry to hear Mark was sick! Me and Ryan live with another couple with two kids and my son as well. All the kids got sick and it was terrifying that Ryan would catch something. Yes we didn’t think the Charlie horse was anything like a blood clot. Now unfortunately he has to have a shot of lovenox an anti coagulant everyday now that he is susceptible to them. Which stinks.... we are both working on trying to be at peace in anyway. We have a lot of family things going on even with all the health stuff. It’s exhausting.