MRI results

[kellyOd]

Hello all - MRI results surprisingly were released about 2 hours ago. Not sure why on a Sunday. Ryan had a thought that if they were released on a weekend that it was obviously good news. It is not good, nor completely bad. There were no "definitive" language used. Words such as "suspect" and "compatible". Although I am not naïve, I can appreciate those words for what they are. Seems to be suspicious around the radius head. Which is exactly where it was on the PET scan. Funny story about that.. the scan we had in October was "clean".. was read by a specific radiologist because of all the hell we went through before.. and I look at the CD a month later - and plain as day I see the elbow activity. WHY is it that I have a high school diploma and I see these things at first glance? Is this some kind of human condition crap? Ungodly frustrating, and so unprofessional. If we knew, we could have been on this. Now almost December - we have wasted precious time. I am hopeful. We have been kicked in the gut to many times to be scared of one "suspect" lesion. I have looked up some interesting options, although we are getting low in the options - I believe we can pull through a couple more so long as we can keep this under control long enough to execute them. Ryan feels great otherwise. Achy elbow. We will not go down without a fight. If anyone has had their eyes on any treatment options please throw them at me. I have looked into Proton Beam Therapy for radiation options. Also Tecentriq + Cotellic + Zelboraf which is the combo of immunotherapy AND braf/mek inhibitors. Of course TIL as well.. but he does not have a lesion that is easily accessible to create the cocktail. Anything from you guys would be awesome. Love you all. Xoxo

[missyrand Ambassador]

Kelly,Standing here with you.

Of course you have become an expert by default. And of course you are thinking ahead.

And of course, I expect there will be a strongly worded discussion with radiology.

Talking through radiation options for a targeted location can be helpful for remediation of a particular location. I'd be interested in what your consultation for standard vs proton is. When we had that discussion a year ago I learned that it's really the same deal, just delivered slower at lower intensity. A friend in our melanoma group just had standard radiation rounds that did significant shrinkage for him in lymph nodes near his primary and origional site.

Keep taking advantage of Ryan feeling as well as he can. How are you feeling/ sleeping/ coming to grips with the aggression of this melanoma?

Thinking of you,

missy

[kellyOd in reply to missyrand]

Thank you for always replying. Truly you and Wayne have helped us so much in this. I am also super curious about proton vs standard radiation. All the hype about it.. figured I would check it out! Ryan has had the super targeted radiation to his brain.. forgive me.. SRS? It was essentially 5 sessions packed into one “super session”. I am feeling drained. I just got a new job - and things were looking up! First time in two years Ryan has felt well at this time of year. It’s wonderful. But again, I feel like we got gut punched again. Stress of virtual learning with my 5 year old - new job.. custody with my sons actual father.. Ryan’s health and new job, no daycare. It is hellish. Surprisingly I sleep like a baby. Especially when Ryan isn’t in a lot of pain. He really is in very little pain. He just knows his body.. and here we are. He’s right again. His ache made me pop the CD in. Low and behold. The melanoma has me angry. But my anger channels.. I have heard I do well in chaos.. doesn’t feel like it at the time but in hindsight.. I see it.

[doulagirl]

Kelly, I so hear you.

We all have become experts on our partners melanoma. In all our hospital stays and during the adverse events I have seen things that didn't make sense to me, that looked weird and still it would be hard to convince them to take another look. You are much better at that because Ryan has had so many different challenges and treatments. You are the one that knows him best and that knows his clinical history best . As Missy said, it warrants another discussion with radiology, and in my opinion also with your oncologist...they are not the radiology experts but they sure see a whole lot of images themselves and he could have seen it , as did you. Our oncologist sometimes overrides radiology conclusions...' I see that differently' and most of the time he is right. Option wise, you know much more than I at this moment, but I would also suggest the triplet therapy and local radiation.

Are you taking care of yourself?

Love

Dorothe

[kellyOd in reply to doulagirl]

You are so right. Now that you say that.. I’m going to get a real honest opinion from her. I am sure it will warrant another PET scan a couple weeks early. He got one first week of October - usually 3 months apart. So we will see. I will raise hell as I usually do. I’m sure they are tired of me.. but I’m tired of people not doing their job. Time is a luxury people like us don’t have. And the sooner these a holes start realizing it and double checking their impressions the sooner we can get our loved ones the treatment they need. I think they should be double checked as a protocol. But hey.. that’s above my pay grade right..

[SGHSweethearts]

Kelly, Oh gosh, I really hate to hear all this again. Damn, You and Ryan have been through the ringer and back. Melanoma sucks.

You my friend really are amazing. Boy, these Dr’s should know by now to be going over all of Ryan’s test results with a fine tooth comb, and you are hot on their trail. I am sorry you have to do all this research, but I know that so many of us are going to benefit right there along with Ryan because of you.

I so wish I had some great knowledge with all this, but I do not.

I pray that while Ryan is feeling good you are both able to get out and enjoy the holidays.

My prayers are with you both always.

Michele

[kellyOd in reply to SGHSweethearts]

Thank you so much Michele! You’d think that would be the case with the scans. But some days i truly think this is one big sick joke and it’s the medical communities way of playing God. Obviously out of anger that’s what I think.. and it feels like these days I’m more angry than satisfied. One day I will be a doctor and take my oaths, and mean them. I will do no harm..

[HSsweetheart]

Kelly, it's very frustrating (and humbling) to know sometimes you're the only one paying attention and cosequently keeping Ryan alive. It shouldn't be that way, but as we all know, often too true. I remember years ago while my mother was being diagnosed, I asked the doctor his interpretation of the CT that we'd all been waiting for and I had looked at and had a nurse friend help me interpret. He came to her room without even looking at it. No concept of our family's anticipation of the results and how we'd been hanging on every moment. I don't think they don't care, they just can't care as much as we do. None of the professionals can be as comitted as we are.

[kellyOd in reply to HSsweetheart]

That type of behavior is absolutely unacceptable.. no one will ever know unless they have personal experience. Often times I have felt like Ryan is another room number on someone’s list.. and I don’t take to fond to that. They will remember him. And sadly it is most likely because of me and my behaviors to try and save his life.. I will make sure when they go home and reflect upon their day and Ryan crosses their mind, good or bad - they will remember.