Starting ipi/nivo next week

[Ryan2]

Hello everyone, as I’ve gotten a second scan with NED, it’s been decided by everyone that it’s time to switch from taf/mek to ipi/nivo. I have heard many horror stories but also many stories of hope. I did participate in the study for ipilimumab many years ago before the FDA approved it with no side effects, so I hope to tolerate the infusions well. My body is healthy, and my blood work comes back recently with all panels reading like one before the taf/mek. I will update the thread with the results if it can help one person. Hope you all are well.

[VivaciousMo]

congratulations on your second NED scan!! Fantastic news! So happy for you and good luck with the ipi/nivo! I also just got my second NED scan after being on braf/mek since September. Let's keep on keeping on!

[Ryan2 in reply to VivaciousMo]

Thank you! Congratulations to you as well! Do you plan to stay on the oral targeted therapy?

[VivaciousMo in reply to Ryan2]

Thanks! And yes, for now. I had done ipi/nivo last year and was fine until it caused toxicity in my liver :/ So that's not an option for me anymore, but I'm also doing a whole host of other things to try to strengthen my immune system. I am hopeful!

[Ryan2 in reply to VivaciousMo]

I’m sorry you had to deal with that. I hope that you find another therapy! I was told that taf/mek will eventually lose its effectiveness. What are you taking to strengthen your immune system? I have a few things in my repertoire that I can share if you aren’t already using them!

[VivaciousMo in reply to Ryan2]

Yes, please! I'm open to recommendations! I did see a melanoma specialist in LA who said he's had people on the braf/mek combo for years which gives me hope and I believe I can also help support my immune system and stay NED.

I'm focusing on the "easy" things: sleeping more, stressing less, exercising, and eating better. I'm seeing a functional medicine doctor who is helping with some probiotics because something like 70% of our immune system is in the gut. I'm also taking quercetin, vitamin c, vitamin D, tumeric and essiac tonic. What are you doing?

[Ryan2 in reply to VivaciousMo]

I would like to hear about the probiotics! I have never heard of quercetin.

This is my regime;

I take liquid oxygen twice a day with at least 8oz of water. My girlfriend did a lot of research and found that cancer can starve in a high oxygenated environment.

I also take vitamin D, omega 3, and a mushroom supplement. I was taking milk thistle to help with my liver function; but the doctors asked me to stop taking that while I’m on the immunotherapy.

I drink turmeric tea. I try to drink a few cups a day. I used to put the powder on my food, but have since found a lot of teas that I enjoy more that also contain other things that are good for me like ginger etc.

I try and eat an all organic diet, but since my health has gotten a lot better I have been more lenient and have focused more on what I’m adding rather than what I’m taking away. Not eating excessive sugar because cancer also thrives on that.

I have seizures due to a brain tumor from melanoma in my temporal lobe. And I manage that with medication but have found that CBD has helped me tremendously. Also helped with minor aches from a baseball sized tumor I had in my lung.

And for my night regime, I take 3mg of melatonin. I have been told by my Palliative care doctor that melatonin has anti cancer properties. I don’t ever have problems sleeping, I take it just for the sole fact that my doctor said it was good for me.

I just started going to the gym again, so I also am trying to get exercise to be healthy from the inside out. I have gained a lot of strength back from being almost crippled from the melanoma in my bones.

[VivaciousMo in reply to Ryan2]

Thank you for sharing! Your commitment and your girlfriends' research are going to do wonders for your health. Keep up all the good work! They all sound like such great things for you. Have you read the book Anti Cancer? It is so good and it talks about all the ways in which our bodies can fight cancer given the right support. I made a lot of diet/lifestyle changes based on its recommendations. It's actually a fun/hopeful read and is very practical!

I also do the liquid oxygen. I periodically take milk thistle but have gotten lackadaisical about it. I also cut out sugar (so rough-- but it will be worth it). I try to eat organic, but like you I have gotten slightly more lenient when I am out and about and just need to eat. I think you have the right idea on doing more of the right things and not obsessing over small details.

which mushroom supplement do you take? Quercetin is an anti-oxidant and anti-inflammatory. A friend whose husband was diagnosed with stage 4 throat cancer and given 6 months to live went on a very strict regime and is still here 10 years later and cancer free! She gave me lots of advice on supplements and quercetin was one of them. Also reservatrol.

She also recommended daily smoothies of organic vegetables (I do kale, ginger, bok choy, spinach, zucchini, cucumber, celery, lemon) so I did that every day for like 4 months and now I probably drink it every other day but am still trying to be more vegetable-centric and eat an anti-inflammatory diet. I feel pretty good! I also add flaxseed oil which is also supposedly good for oxygenating the blood.

Onward and upward! Thanks for all your input! We've got this

[Ryan2]

Hi everyone. Today I sat in the infusion center for my third lovely dose. I waited for my nurse to return with my IV as I don’t have a port and there was a sudden issue with my bloodwork. Long story short I have a medication induced hepatitis and, though I have no symptoms, I cannot receive my infusion today and must take an 8 week dose of prednisone. The team of doctors and I have not discussed the treatment afterwards, whether or not the combination will begin again is unknown. Any experience with prednisone would be great to hear about. Hope everybody is well.