I hope all are doing well and getting through the struggles. There are definitely days where I want to just sit and cry. And sometimes I do.
A bit more of an update of where we are;
Diet is getting back on track. Thanks to the steroids Ryan has been on, it’s been a free for all cause he never feels full. So to be 100% honest, the diet has been horrible. But we are back! Well... getting there organic chicken, kale, and brown rice! Which is a diet we both were on when we were going to the gym a lot to shed weight. But turns out this is good for him as well. I have done a lot of research and BRAF positive patients do not benefit from a keto based diet. (A lot more I have to read)
Also a healthy breakfast of yogurt, fresh organic berries; (strawberries, blueberries) apples, and bananas.
Still ONLY drinking distilled water. No sodas, juices, etc.
But we do turmeric tea everyday twice a day, liquid oxygen twice a day, vitamin D, fish oil, and melatonin. All recommended by his palliative care doctor except for the liquid oxygen. I had a little birdie for that one. He also sticks to his CBD product twice a day (also helps with seizures)
We had infusion day yesterday! Which is exciting for me as a caregiver. Him being off treatment for the time being allowing his liver to repair itself was absolutely nerve racking. His enzymes were not down to perfect levels, so instead of the scheduled ipi Nivo combo, he just got a single dose of the nivolumab. He will get another in 3 weeks, and after that he will continue to get Nivo as maintenance every 4 weeks. That dose is higher than what he is getting currently. Fingers crossed his liver holds up!
We have the thermometer ready; he was getting fevers during the combo so we are expecting it again. No Tylenol though.. so have to try old school tricks to break the fever which I’m okay with
Other than that, me and Ryan have had slight arguments. I want him to listen to his body; rest, and focus on being healthy. But he wants to do things like shoot his guns, work, vacation, and live life normally and to the fullest. I want him to do that; but I am such a worry bee.. so I had to sit and think and put myself in his shoes.. he’s not a walking piece of cancer. He is a human with feelings. I have to stop treating him like he’s this sick ball of flesh. (All of that was said very harshly..) he’s the love of my life.. I just want to put him in a protective bubble. Needless to say; we are no longer arguing; and I am being understanding and supportive of what he wants to do. He wants to live. And that is what he’s going to do ❤️ I feel like I can be overbearing, it’s just my love and wanting to keep him safe.
Anyway, I’ve been ranting. I love you all; and hope to hear updates on any and all ❤️
Kelly from MD xoxo
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Thank you for your honest expression of the difficulty of walking the line of partnership with s loved one LIVING with melanoma. It is a part of us, not all of us. But The dominance of the cancer shifts over time do there is constant adjustment.
It’s a weird 3 way dance when I think we are lucky to figure out a 2 way dance. Sometimes it’s a slow waltz. Or organized like the Rockettes in a kick line. Other times if looks like 70’s rock chaos: tempos change and we try to ring the new rhythm groove. That’s my image ad you were writing
And crying out of frustration or grief and just wanting to “sit this dance out” seems normal. How, when, and for how long may be different for you and Ryan, and not always at the same point in time.
It’s exciting you can both have options now for food, work and vacation. Dancing with melanoma doesn’t always allow for these dance variations and I’m glad you are getting the chance again.
It is indeed a 3 way dance.. and the melanoma is stepping RIGHT on my toes.. trying to have a balance of being aware and ready to take on the world, and relaxing and going with the flow is something I’ve been struggling with.
Arguing over work schedules, me thinking he’s working too much, and not resting enough has been the main thing. But he enjoys being useful and he enjoys being active. A constant merry go round. He had a seizure at work on Mother’s Day (Sunday) It’s a busy day for our restaurant. And then had a partial seizure last Sunday. Needless to say, I don’t like sundays 🙄
Vacation is going to be fun! We both love the beach, but he has been checking out the SPF body suits. He didn’t think he would make it to summer; so we are going to try and have fun and make the best of it!
Thanks! I just read some of your story and it is incredible. Keytruda truly is an amazing drug. I am so happy for you! I really hope Ryan can get there. Technically he has had a few NED scans. Do you still get scanned?
You are very welcome and I know it is hard but it is important stay positive as the both of you work the treatment process. Yes, I still get check up scans and fortunately it found a new type of cancer last year early. I am continuing treatment both chemo and Keytruda now for cholangiocarcinoma. I was very lucky I was getting the scans and they found it. Wishing you all the best!
Go with what your husband wants to do. I know it’s hard, I was the same way you are now, but its his illness and his life, and he needs to do whatever it is he needs to do. Otherwise, patients feel like they are just sitting around waiting for a bomb to go off.. He’ll be much happier if he does whatever he wants—even if he takes on more than he can handle. Try to support him in his activities for himself. Some patients have to learn for themselves what they can or can not handle.
Why no Tylenol? The fevers can get really high, and it’s very uncomfortable. Also cancer patients can develop sepsis or an infection that the Tylenol can’t break. You need that warning so that doctors can treat the infection before it goes too far. Unless the doctor recommended no Tylenol, I’d recheck that before you withhold it. Good luck to you both. I hope the immunotherapy get him back on track
The reason he can’t use Tylenol at this time is because Tylenol is filtered by the liver, and during the ipi Nivo treatments his liver went into medicine induced hepatitis. So his enzymes were REALLY high. I have a question about ibuprofen because it is not filtered the same way as Tylenol. NSAIDs are different. But so far no fevers so we are okay for now!
I am always in conflict with my emotions towards all this. I seem to have more questions then answers. Story of my life. But I have a notepad in my phone that I write my questions in. So hopefully in the next week I’ll knock some off my list.
I think it’s in a mans DNA to figure it out the hard way. They take on as much as they think they can handle. And will have to figure out on their own when they can’t handle it. I can’t tell him any different 😂
You are right about that! Maybe he just needs to hear you say, “Sure hon,” to whatever he wants to do. But be prepared, he may try and test you. He may say he wants to go sky diving or something else you haven’t thought of yet! What he’s really looking for is to have your support no matter what. If you can support him in the little things even if you don’t agree with him, he knows you will have his back in the bigger things that really matter.
And yes, I’d check with the doctor on what to use when a fever arises. They may have some kind of prescription meds that go along with the immunotherapy meds to reduce fever. Everything is so new, meds may be available that we don’t know about yet. Also, I don’t know how you feel about this but weed is now legal in Maryland for cancer patients if they are experiencing severe nausea or pain. Your doctor can write a prescription for it. I think it comes in pill form too.
Kelly, really sounds like Ryan is doing well, and that is such exciting news for us as care givers. I’m glad he is on his treatments again. I pray you will find that on the Opdivo alone he doesn’t have a problem fevers anymore. That was the case for Mark. Ryan ranting to get out and do it all is a good thing. He’s feeling good and wants to live as normal as possible a life. Mark enjoys getting out and doing whatever he can and trying to keep the cancer in the background. Ryan will let you know when he needs to rest and slow down. Sometimes Mark tells me I plan too much stuff to do and he doesn’t want to go anywhere. Then I have to take a step back and kind of take his lead for a bit.
As far as what is going on here. We are anxiously awaiting Marks scans on June 5th, and even more anxious about treatments he has not had Opdivo for almost 3 months now so we are extremely worried about what is going on in his body and where we go from here. We are praying that he will be able to resume the Opdivo, but the Dr made that sound like it was the end of the road for that, so we are nervous about what is coming next for Mark. For almost 20 months he has been doing well, and we just don’t want it to end. Don’t want to be Debby Downer here so trying to stay optimistic and hold a low profile right now. Really stressed, but trying not to think about it
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organic chicken, kale, and brown rice! Which is a diet we both were on when we were going to the gym a lot to shed weight. But turns out this is good for him as well. I have done a lot of research and BRAF positive patients do not benefit from a keto based diet. (A lot more I have to read) 
