How is everyone?

[kellyOd]

Wanted to check up on everyone.. how are you all doing? Any new news? Any new scans? Anything anyone wants to talk about? Much love xoxo

[SGHSweethearts]

Hi Kelly, My husband is doing ok. He had his 1st dose of the 4 Wk Opdivo (he has been on the every 2 wk dose for 17 months) which was approved a few months ago. He is having some nausea, and little loss of appetite, but doing ok. We are praying that it is just something he has to get used to. He has his next Scans: MRI Brain, and PET Scan in March. In August I think they are stopping the Opdivo, that is going to be a scary time for us, but try not to think about that right now.We are enJOYing every day. How is everything going with your boyfriend? I hope all is well

Michele

[kellyOd in reply to SGHSweethearts]

So did the nausea just start? He’s been on it for a while and hasn’t had any side effects until now? You sound like us, the next PET is in March, and we have a brain scan on February 20th. I also have anxiety when it comes to things stopping, it’s a good sign they want to discontinue cause he’s doing so well! But not having it is also nerve racking.. that’s good you are trying not to think about it, it’s months away! So no worries ❤️ we also are going to stop the Taf/mek that has been working miracles in the next month or so, and are switching to an immunotherapy combination. Anxiety ridden about it.. but again, trying not to think about it for now 😊 I’m glad everything is going well.. let us know how he tolerates the opdivo. I want to hear if the side effects subside or get worse. Praying for it to go away!!!! Xoxo

[SGHSweethearts in reply to kellyOd]

Kelly,

He has experienced only occasional nausea and vomiting throughout his treatment, but since the 4wk Opdivo dose he has been very nauseous almost every day, he has also started coughing a lot again, loss of appetite, and a lot more fatigue. I called his oncologist and they said unless it gets worse they will see him on his appt the 18th and hopefully we will see what is going on. I pray it’s not anything we have to worry about

I will be praying for your boyfriend as well I know both his and my husbands scans are coming up. We take it one day at a time.❤️

So glad to have you to talk with and share support, prayers, and anxiety.

Michele

[kellyOd in reply to SGHSweethearts]

Those sound like common side effects. I’m sure there’s nothing to worry about 😊 any nausea meds working for him? Tiredness and loss of appetite seem common. I don’t know how much if at all have looked into THC oil. I feel like it could combat all of those. I am also praying for you guys. Will be looking forward to hearing the news from the scan!!

[SGHSweethearts in reply to kellyOd]

Thank you Kelly, I worry about everything, it’s nothing new for me, its how I cope, unfortunately not too well. Mark has always been the one to calm me down, and reassure me everything is going to be ok. I was just talking about CBD Oil with a friend. She said she uses 3 CBD, 1THC. We don’t know much about this at all. Isn’t the THC part the one that gets you high? He doesn’t want to do that he’s still driving. If you go to a store is there someone really knowledgeable there to talk you through all this? Mark is having treatment on Monday, and surgery on Tuesday for a previous excision that didn’t get wide enough margins. Can’t wait for scan day to come and go. We’ve been getting a lot of rain for us here in CA. More than we’ve had in years so it’s actually been kind of nice just staying inside and listening to the rain.

Michele

[kellyOd in reply to SGHSweethearts]

Ryan uses a CBD called charlottes web. You are correct, the THC oil is the one you will feel affects from. Medically it’s awesome. But Ryan too, will NOT use that because it causes affects. It took me a while to convince him the CBD didn’t. I got him to try it, and he swore if he felt different it was going in the trash. Needless to say, he’s been using it for a few months now doctors are aware and aren’t upset by any means. Fortunately, it is legal here; not sure about the status anywhere else. And a lot of brands are terrible. I researched the one he uses thoroughly. It helps with mild pain, but we mainly use it to try and combat seizure activity. And YES, where we get the CBD, it’s called “moms organic market” and the people there are able to explain to us how, why, what for.. we had quite a few questions and they were wonderful. And I as well, can’t wait for scan day.. I am praying everyday multiple times a day that the scan hasn’t changed from December 26th.. (clean).. keep me updated on how the surgery goes! In MD we have had some good snow, the weather patterns have been absolutely bizarre. Only state I feel that we get all 4 seasons in one week! I’ve never been to CA and can only imagine it’s beauty.

[SGHSweethearts in reply to kellyOd]

Kelly, Thanks for all the information. We are going to try and go to a store sometime in the next week or so. It is legal here in the state as of January. So there are stores popping up, but I want to make sure we go to one that knows what they are doing, so I guess a medical marijuana store is the one we want.

Sounds absolutely beautiful in MD, we’ve never been. We don’t really have seasons here, I sure wish we did, we see pictures that are just breathtaking. We do snow ski and our closest mountain is 2 hrs away, we used to go a lot and ski, now we go to the mountains and just enjoy looking at the snow and watching others ski. (We don’t get too much snow though, February is pretty much it now) It’s always been our little bit of heaven in the mountains.

I have family in Boston, and have always wanted to visit that area. Maybe one day I pray🙏🏻

Praying for Ryan and Mark that their Scans haven’t changed. One day at a time.

Don’t know if you’re an Elvis fan at all, but I love all types of music. There is a special on tonight with all kinds of different artists singing his songs, we are looking forward to watching that tonight.

Michele

[missyrand Ambassador]

Today we have an appointment with the oncologist. My husband continues to grow new tumors just under his skin at a rate of about 1 per month in random locations. A new one appeared this week on his left calf.

We are still in the holding pattern for the TIL study at VCU waiting on the IRB (human study permissions). Wayne reached out the the study doc and she wants him to have a colonoscopy to ensure no lasting IBS or colitis or bowel perforations from the Yervoy side effects. Which is cool because we are both due for the 60 year check up and colonoscopy this year anyway. He saw a new gastroenerology doc this week who was awesome in getting a complete history of the melanoma and who said he will talk with the study doc to ensure he looks at everything she requires. Again, another doc who has been an excellent listener, gone the extra mile, and was engaging with knowledge and desire to be collaborative. Every single doctor and NP along the way these past 4 years, from every discipline, has been outstanding and we feel super fortunate in that regard.

The waiting for VCU has been pretty difficult. In Dec. our anxiety was so high I was nauseated often during the day and could not sleep at night, so that was a 10 on the Missy Anxiety scale. Today is about a 5.

Wayne will have to have a brain scan to ensure there are no brain mets to qualify for the TIL study. That will happen once VCU says GO. Last brain scan was a year ago. I just want this next phase to get underway, even though it will be fairly brutal.

So here is what I did yesterday to help with anxiety management:

1. made homemade pie crust and chicken pot pie for myself and neighbor I was cat sitting for. It was delicious!

2. after discovering this new tumor, I made Wayne brownies in his favorite pan with all edges. He brought me home a yeast donut and bar of specialty chocolate. I loved that we were reaching out to each other with medicinal chocolate.

3. deep breaths

4. read my book in our building hot tub with an adult beverage in a sippy cup

5. booked our plane tickets for Alaska in June. I had already purchased trip insurance for the land/sea portion and had been delaying the flights. But I voted for hope and bought the plane tickets (also covered by trip insurance)

6. snuggled with my sweetie

7. acknowledged out lout that I feel brittle and anxious

8. sent photos of my cat being.... a cat

9. did about a 50% job at my work. The past 2 monts have been rough in this regard. I can't concentrate or persevere well, but doing the best I can in spurts

10. planning for our band to play for 2 benefits next weekend and a church deacon retreat this weekend. These will both occupy my head and heart.

Off to the doc in an hour. It's lightly snowing here again in DC and I love that.

Peace,

missy

[kellyOd in reply to missyrand]

Please let me know how the appointment goes! We as well, are getting some light snow, I live in Harford County in MD so we are in the 1-2” range. It’s beautiful ❤️ I was curious, I looked into the TIL as well. Since Ryan has had a brain tumor, but has since been removed, nothing has shown up since, would that automatically eliminate his eligibility if we ever tried that route? I’m glad you guys have been blessed with good doctors. In these cases, you need everyone on board. And if they aren’t, find a new one. I love when they go the extra mile.. it means more than anyone knows for them to genuinely care and fight for you. I’m sorry your anxiety has been terrible. I’m glad to hear today is a lot lower! Mine has been high as well... and actually for no good reason. Everything is actually kind of good right now. NOT JINXING IT! All those things sound super relaxing ❤️ I’m glad you are managing it well and recognize when you need to take a breather. Please keep me updated after the appointment!!! Xoxo stay safe!

[missyrand Ambassador in reply to kellyOd]

Kelly,

The appointment today went as expected. Photographed and measured all the tumors. Tonight when my husband got home his right ankle is swollen all around the foot, so no idea what is going on there.

I know that TIL has an exclusion for brain mets. I don't know what the status is if the tumors have been removed. It is a good question to ask Iovance. They list a phone number on their site as 866.565.4410 where you can ask questions with someone with the melanoma study.

Thanks for checking in on me.

missy

[kellyOd in reply to missyrand]

That’s interesting.. swollen foot out of no where? How many tumors have been noticed and measured? All in different distant areas? Thank you for the number, I will call just to keep the information in my back pocket. I love to stay in touch with everyone. We can’t do this alone.. ❤️

[missyrand Ambassador in reply to kellyOd]

Initial nodule was on his head, which then converted to intransit metastasis.

Then right leg: tumors removed twice from there

Right shoulder, second iteration there now

tumor about the size of large pea above belly button

tumor midway under left side between armpit and abdomen at midline smaller than on stomach

newest one on left calf and is oblong

May be a deep lympth node under right armpit. Shows on scan but can't be palpated

Nothing in major internal organs on scans.

His original sentinal node bioposy was negative.

He does not have the BRAF mutation: he is wild type.

Clueless about ankle swelling. Will track over the weekend. Kept his foot elevated tonight while we watched the British Baking Show.

peace,

missy

[missyrand Ambassador in reply to missyrand]

And I forgot the tumor on the back of his head.

It’a Sunday at 8 am now

Foot swelling worse after 48 hours. Has pitting edema and redness now including bottom of his leg so calling oncologist this am for guidance and possible ER visit. Will post outcome separately

Missy

[kellyOd in reply to missyrand]

Oh no 😞 I had to look that one up.. fluid build up? Anxiously awaiting an update.

[Bigsister3]

It sounds like you are all hanging in there and that is great news. We survived minus 50 windchill with nothing rupturing in the house. Whew since we have it on the market. In three days it will be a year since I lost my baby sister and we all seem to be ok. Though my sister and I confess that we don’t think of her as not here. We have started saying some of the funny things she used to say to us to each other with a knowing smile. I feel so connected to this community and think everyday of you all. Sending all my positive thoughts.

[missyrand Ambassador in reply to Bigsister3]

Bigsister3

I also lost a younger sibling this past year and it’s been devastating. However, crossing over the first year mark has significantly lessened my grief responses. Like you, I can reference memories and not dissolve all the time and can smile at times.

Peace and condolences as you persevere

Missy

[Bigsister3 in reply to missyrand]

Thank you