Fevers have been harsh

[kellyOd]

Hey guys,

Second infusion; and I spoke too soon. I should know better 😕 the fevers have been pretty bad. Although no other side effects accompany them. Which is good. It usually always happens in the middle of the night, around 2:00AM. Not really understanding why.. but thankful that’s all it is. Last night we got to 101.9 which is pretty high. And considering Ryan has seizures I was super nervous he would have a fever induced one. For a normal person that isn’t a terribly horrible grade fever, but still is so nerve racking. Had to get a tepid rag and dab him down and Tylenol until it broke. Took almost 2 hours.. needless to say I’m tired today lol.

Got the infusion on April 2nd so just hoping the fevers will stop soon. He has two infusions left with the combo, but if these side effects continue I’m not sure if they will stop it and just go down to Opdivo.

Ryan has been back to work though! Which has been nice for his mental state. Getting back to normal.

Scans aren’t until the end of May. So we have some time until we see what’s really going on inside. As always anxiety is high. But still no new pains that resemble the hell we went through at the end of 2018. Small amounts of joint pain in the knees. But the pain stops when he is off his feet, which is a good indicator that it isn’t the bone Mets he was used to that were painful no matter what position he was in.

I have read some interesting articles that include Wheat Germ Extract. Anyone heard of that? Also, Quercetin. Interesting research that came from Johns Hopkins on it. Our team doesn’t want him on any new supplements that don’t come naturally from food for now, but it’s still intriguing.

How is everyone else?! Xoxox

[missyrand Ambassador]

Last night at our melanoma support group one of our members talked about the chills/ fever he gets, too. He just rides it out like Ryan with support from his wife to monitor and use blankets, tylenol and cool cloths. I'm sorry this is going on, but glad you are there to help and no seizures are adding to it.

We are heading toward going to Richmond Sunday night for Pet scans, blood work for the TIL study, and then staples out Tuesday. Easter Sunday is last respiratory swabs to ensure no colds/ flu/ virus with admission for a month at VCU the day after Easter. Can't come soon enough for us...

peace,

missy

[kellyOd in reply to missyrand]

Oh wow that’s so interesting! I really need to find one of those support groups... I wouldn’t even mind traveling for it. Just so worried his insides are like, frying up. We have an appointment Monday with onco so I’m just waiting until then to unload my questions 😂 your husband is being admitted for a month? Is that required for the trial??

[missyrand Ambassador in reply to kellyOd]

Kelly

For the TIL trial he had to be in hospital about a month. The tumors harvested have been split out to find the T-cells with the lymphocytes that have been attacking the melanoma (tumor infiltrating lymphocytes). These are being replicated to about 60 billion. Wayne will receive two kinds of chemotherapy in hospital that will wipe out his immune system (goal is zero detectable Tcells) and then they will infuse hi with his own fighter TIL cells, add in interleukin-2 to make them quickly proliferate, then wait for his immune system to return to safe levels prior to discharge.

The protocol has him in hospital because there are a boatload of side effects at each step that must be closely monitored and treated plus with no immune system, he needs protection from even a cold because he’ll have nothing to fight it.

Missy

[SGHSweethearts in reply to missyrand]

Missy,

Wow! Major prayers being said for Wayne. This sounds scary and amazing at the same time. I cannot even imagine the challenges Wayne will be facing, let alone being in the hospital for 1 month. Praying for you as well Missy. I know this will be hard on you as well. Are you allowed to visit at all while he is in the hospital? 🙏🏻

Michele

[missyrand Ambassador in reply to SGHSweethearts]

We are so fortunate in many ways. I grew up in Richmond and this is where Wayne and I lived until 5 years ago. Two of our daughters still live there (one is currently in nursing school at VCU so on the campus each day) and we have friends and our church community waiting to support us.

I’m staying with friends I’ve known since grad school 30 years ago: we raised our kids together and they have become like siblings to me. Yesterday they humbled me again with their generous love saying, “You always take care of so many people. I know you want to do things in your usual way (cooking and baking and bringing flowers to us), but we want to help by supporting you, so you can focus all your energy on Wayne. Our job is to take care of you. Let us do that.” So I’m practicing receiving, in such a completely uneven way.

I’ve said here before that asking and accepting help is crucial for this marathon. And I’ve been saying yes, yes, thank you to so many people. This additional level of really daily primitive dependency on others for the basics of food, shelter and safety is quite daunting to me at this point. I’m so aware of my basic level of terror in the face of melanoma right now: the mystery of this illness, this life, the crazy courage it takes to keep moving forward through what is more unknown than known, to vote with your feet and voice for hope while simultaneously girding yourself for death.

This is my essential limitedness: I am not God; I am not all knowing; even at my most powerful loving, I cannot protect my husband and children.

So I keep trying in my clumsy way to remember, speak, and behave in the truth if my limitedness, and to receive the grace that I am not alone. Others can help and can do what I can’t and will steadfastly be present in any suffering we have from the imperfections of this life.

Missy

[SGHSweethearts in reply to missyrand]

I can so relate to all those feelings Missy. My prayers are with you as you travel through this next phase of the journey. Sounds like you are blessed with some amazing friends. I am glad you are able to accept some help you so richly deserve. I have a very hard time with this. God Bless you and all your friends.

Michele

[carlsbad317 in reply to missyrand]

Sending prayers your way all goes well.

[SGHSweethearts]

Kelly,

You are doing an amazing job. I understand your concern with the fever induced seizures you have an added thing to worry about. So glad that has not happened so far to Ryan. Mark was only able to have 2 doses of the Yervoy and then just on the Opdivo. Most people don’t get all 4, and we were told 2 doses is good. Here he is 20 months later.

It is amazing to think of where Ryan was and where he is today. And back to work, Congratulations, we know that feeling as well. A miracle, truly such a blessing. Enjoy every day. Praying for you both. 🙏🏻

Michele

[kellyOd in reply to SGHSweethearts]

That’s so beautiful.. really does give us so much hope. 20 months.. my god. So incredible. God is good. He’s just having the fevers at night with nothing else. I am worried the 3rd one will be rough. That one is scheduled for April 24th. So god willing he can make it through all four! I have Mark in my thoughts all the time along with everyone else here ❤️