Sadly, TIL Trial has ended for my husband

[missyrand]

It's taken me 2 weeks to be able to write an update because our news has been so sad and disappointing.

On Sept. 3 we went for another 6 week check up at VCU for Wayne post Tumor Infiltrating Lymphocyte transplant. His CT scans showed progression with new liver tumors. Not the news we had been getting, and not what we expected.

So, for us this clinical trial allowed for initial improvement, but the improvements are not sticking. Little BB sized tumors are showing up again in the past 13 days cutaneously on his back. It has been very difficult to share this update with our children, family, and now friends. Although the trial permits for a repeat of the TIL process to be done, Wayne is not a candidate since he is showing progression this soon after the intervention in May 2019.

Here's where we are heading next:

We see our local melanoma oncologist/hemotologist tomorrow. He apparently has at least one idea for another clinical trial. Probably a full Pet and brain MRI will be ordered to fill out the knowledge base.

We already reached out to Dr. Rosenberg at NIH and there is nothing new there for melanoma right now. I did look through the 11 pages of melanoma clinical trials at cancer.gov/about-cancer/tre..., but there is too much now for me to sort through all the eligibility criteria. Our VCU doc did mention NIVO as a possibility, but Wayne has already had Keytruda and Yervoy, and TIL as immunotherapies, so the doc will need to explain to me what the last immunotherapy has that the others have not. Bottom line, we are now outside the known science for my sweetheart as a Wild Type melanoma.

A synopsis of each treatment, the tumor genetics, and blood panels are being packaged so we can consult at other NCI centers either remotely or in person. We are mentally trying to be prepared to leave where we live, and perhaps change/ leave our jobs as needed. We have our finances in order, and gracious offers from friends and family to come live/ stay with them as we need.

As to the long-term future, the only answer my magic eight ball is showing is this: Reply hazy, try again.

So that's my plan. To try to live in the hazy time, and try again.

Peace, Missy

[carlsbad317]

Praying for your family.

[SGHSweethearts]

Missy, I am so sorry to hear that Wayne can no longer continue with the clinical trial, and the cancer has progressed. In deed so heartbreaking. It sounds like you have a lot of work ahead of you to sort through all this and find the next step for Wayne’s treatment plan, which I have no doubt you will find.

So wonderful to hear you have so many beautiful people in your life that are able to help you in this next step.

My prayers are with Wayne, you and your family.

Many Blessings tomorrow.

Michele

[Hidden]

Wow! That stinks. I was really hoping the TIL was going to stick. I love that you always have a plan Hang in there and let us know how we can help.♥️♥️♥️♥️

[Bigsister3]

I am very sad that TIL didn’t have the long term effects we were all hoping for. I wish your family peace and comfort. If your medical inquiries bring you to Chicago you have a home here.

[missyrand Ambassador in reply to Bigsister3]

I am beyond touched by your gracious offer

Thank you

[surviveandthrive]

sending you love and strength

[doulagirl]

Missy, it took me a while to write a reply, I didn't quite know what to say. I still don't really know, I can feel your pain and sadness through your words and at the same time you are already getting ready for the next moves. That really feels familiar to me, dealing through action. Please take your time to be sad and disappointed, I am very glad that so many people are there for you guys. Please let us know what we can do for you here and if you ever need to be in the Ann Arbor-Detroit area, I would be physically able to help you with whatever needed. Sending positive vibrations <3

[missyrand Ambassador]

thank you. This community is amazing, and you gracious offer is in my heart.

We are very sad, and crying, and I think today Wayne did some appropriate fist waving at the universe.

I'm not saying no to any possibilities, including the offers in towns other than ours if that is where we are called to try next.

again, deep thanks,

missy

[MeAndMom]

Dear Missy, so sorry to hear this. What did your oncologist say at the follow up?

I just saw this in case it could be helpful, though you will know more /understand about it than I do:

seekingalpha.com/article/42...

Please keep us posted!

❤️ Nadia

[missyrand Ambassador in reply to MeAndMom]

Nadia

Thank you for the outreach and the link. I will be following up for application for us.

As you know, I’m a clinical trials advocate.

Peace

Missy

[Vflowers]

Missy,

My heart goes out to you and your family. I haven't got much to say, other than know you're in my thoughts and prayers.

[missyrand Ambassador]

Thank you.

I’ve cried less today. We met our band mate for practice and you really can’t think of anything else when making music, so it was both a good distraction and something that fills us up

Peace

Missy

[H_Daughter]

Sending you all so much love and prayers

[Crycleo]

Sending love... the waiting is so very hard.