Bad news on scans. Advise welcome

[Bianca10]

Posted an article on Melatonin by the Life Extension Foundation that you may find helpful. I am taking 180 mg of Melatonin before bedtime to try to suppress metastasis while I am sleeping. If you are having mets growing or expanding in size, you might want to consider following my example and start taking melatonin at night plus several times a day in an effort to suppress growth and metastasis. You can buy 60 mg melatonin capsules on Amazon - that's what I did, then I take three capsules before bedtime. As I told my oncologist yesterday, my goal is to stabilize the cancer and stop the mets - if I can make cancer a chronic condition I can live with and that doesn't grow, I can live with that since I feel fine.

Hey Luke,
Do you not have any negative side effects from melatonin especially at that doseage? No drowsiness etc?
In the UK you can only get hold of it via online pharmacies and maximum dose 3mg per tab so basically using up a box in one go if high doses are required.
My partner hasn’t taken any and doesn’t like the idea of taking any.

[CoolHandLuke8723]

I haven't noticed any side effects - here's a video by Dr. Frank Shallenberger MD on Melotonin as a high dose adjuvant for chemo therapy. Says it is not a soporific - can be taken in the middle of the day. No serious side effects but possibly 5 percent have sleep disturbances. Well tolerated.
https://www.youtube.com/watch?v=Roh4lQXneQg

[beach sunrise]

Hey CoolHandLuke, I also take melatonin. I take 15 mg a.m,. 15 mg afternoon, 30 mg night. ND wanted me to take alot more but I just couldn't do it. I was getting behind on work and everything!

[Claudine]

From what I just read, 20mg/day would already provide anti-cancer effects, so you should be good Beach Sunrise!

[Knittygurl]

Hi skimom, I’m a very long term lurker but saw that you were a Q61 mutation….. There is a very new clinical trial, ERAS 254 for Q61 RAS mutations which my husband started last month. He is Q61x and I’m not sure if it’s targeted just for the “x” version of the mutation or not. I will try to post a link about it:
https://clinicaltrials.gov/study/NCT05907304

The trial is using enzyme inhibitors that have been approved already for some forms of skin cancer that have the same Q61 mutation. I’m sorry for the lack of a long signature with all the details but he is stage 4 with about 10 scattered lung Mets that no one wants to touch surgically, so it’s been long term chemo.

Any way, you may want to check it out….

[skimom]

Thank you so much knittygurl! They was very thoughtful of you. I’ll check it out!

Take care and prayers to you and your husband for success :)

[annalexandria]

Folks should be aware that the doctor mentioned here, Frank Shallenberger, is very problematic. He lost his license in CA and pled guilty to medical malpractice in a case in which his tx of a colon cancer patient contributed to his death.

https://faculty.uml.edu/sgallagher/cali ... ase_ag.htm

[J-man]

Wow annalexandria that is a VERY sobering message and word to the wise here.
Thank you for posting it.

Sometimes in the heat of a battle, patients "want" to believe and accept things because it brings them hope.
The danger is that we may not always see the downside of so many things which are just not supported by the science,
especially when delivered by someone who has no right to even be in medical practice.

Wishing all here, never have to deal with the likes of the person named here in your post.

Thanks again annalexandria

[Bianca10]

Skimom—I’m sorry to hear about the lung nodules. But you have lots of options still. My husband also developed numerous lung nodules (now about 50-60 of them) after he was off chemo for several weeks for surgery. Like Claudine’s husband, folfiri and vectibix have helped keep them in check, but they are still there and growing, and the standard of care drugs aren’t working anymore. He did have radiation on a few of the larger spots, just to slow them down, and the radiologist did it simultaneously with chemo.

I realize vectibix may not be an option with your mutations, but have you talked to your oncologist about clinical trials? There are several right now targeting KRAS mutations, and the bot/bal trials don’t preclude KRAS either. That’s what my husband is currently trying to get into, while also waiting to hear from NIH. We have also been interested in some of the trials targeting CEA because like you, my husband’s cancer produces a lot of CEA. They are still early phase, but look really interesting.

How is your husband getting on? X