And the results....

[kellyOd]

The results were not great. Disease progression. Colon mets, mets in the mesentery, an apparent met on his left shoulder blade that we thought we would notice; and in his right elbow.

It’s on the move again.

He can’t do immunotherapy anymore because he has progressed on that, and now has progressed on targeted therapy.

They want to do chemotherapy. Taxol and carboplatin. What the hell is that? Is that really our last option? That’s garbage..

In the mean time; they want chemo; and for him to be screened for clinical trials. They said I could consult with a doctor about TIL.

I am beside myself right now..

[missyrand Ambassador]

Kelly,

You are totally gut punched.

Of course you are beside yourself. I'm so sorry that the news is so extensively disappointing. We stand with you.

It's okay to take some freak out time, be in the trashcan like Oscar: yell and stomp and cry. Use safe people who will hold you and be with you. Ryan will also have these reactions.

And then when you're ready, you'll do the next thing.

Here are some resources for then:

Iovance for the TIL trials.

You are probably equidistant from PA and VA.

iovance.com/clinical/c-144-.... The first thing is if he has any brain mets, he is not eligible. General health is also a consideration, so Ryan may be too ill. You know the drill: latest scans plus narrative reports and blood work need to be in your hands for a consultation.

Taxol and carboplatin.

This is the same chemotherapy option my husband was offered this week when he was washed out of a clinical trial for tumoral injection.

Clinical Trials

Consider using the Clinical Trials Navigator resources that Melanoma Research Foundation and Melanoma Research Alliance have as free resources. Navigate through their websites. They will generate everything through NIH plus what private drug companies have to offer.

Palliative Care

You've seen me write about this before. We had a consultation ourselves about 2 weeks ago. Ryan, and you, may need a facilitator to help you look at options, review values, make determinations as to what and how are the most essential ways Ryan wants to be living right now, and what things he does not want to do so that you are both clear in your partnership. Some treatments have potential to extend life, but have significant side effects and time committments. This means a decisional balance has to be made, and there is nothing wrong with whatever is chosen because it's based on your family values.

Now, go be where you are and know that we are all sending love, and more love. Wait to look at options later. We know you are an information hog and an excellent researcher and advocate, but right now you need to grieve this painful point.

We stand with you. And grieve with you. And will be ready for next steps when you are ready, too.

Missy

[SGHSweethearts]

Kelly, I hate hearing this news. I’m so sorry that the cancer is progressing again.

My usual reaction when things get bad is to take Mark and hide from the world, as if it couldn’t find us. I can only imagine what you and Ryan are feeling right now.

Missy is a wealth of knowledge thank God for her, and you are as well. I always count on what you two are doing, and save all that information.

My prayers are with you both🙏🏻 May the Lord help guide you in the right direction for Ryan.

Michele

[strawberryjam]

Oh Kelly . My heart hurts for you. You and Ryan are young strong and resourceful. Keep asking, looking, and being there for each other as you always have been. I have faith that there will be a new treatment option for Ryan . Hugs .

[doulagirl]

Kelly I am so very sorry. My heart hurts for you and Ryan. Please take your time to digest everything. My wish for you is that you can come together as a couple/family and find a place where you are able to decide what the next step should be. You are strong and a good researcher and an inspiration to so many of us.

Love,

Dorothe