Bad news on scans. Advise welcome

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Re: Bad news on scans. Advise welcome

Postby Bianca10 » Fri Sep 22, 2023 12:27 pm

CoolHandLuke8723 wrote: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.

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Re: Bad news on scans. Advise welcome

Postby CoolHandLuke8723 » Fri Sep 22, 2023 1:36 pm

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.

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beach sunrise
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Re: Bad news on scans. Advise welcome

Postby beach sunrise » Fri Sep 22, 2023 1:39 pm

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!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
7 rds 6-10 CEA 11.4 No more
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
10/23/22 26.x
12/23/22 22.x
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
Chem-sens test failed Not enough ca cells to test

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Location: Montana

Re: Bad news on scans. Advise welcome

Postby Claudine » Fri Sep 22, 2023 1:42 pm

From what I just read, 20mg/day would already provide anti-cancer effects, so you should be good Beach Sunrise!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20;
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22

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Re: Bad news on scans. Advise welcome

Postby Knittygurl » Mon Oct 23, 2023 7:09 pm

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:

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….

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Location: Oregon USA

Re: Bad news on scans. Advise welcome

Postby skimom » Mon Oct 23, 2023 9:55 pm

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 :)
47yo F at DX
DX 12/11/22 Stage IV (liver & lung mets) KRAS PIK3CA
12/15/22 Primary tumor removed from Transverse Colon (4.3x4.0x0.6cm G2 3/15 lymph nodes. Clear margins)
01/06/23 started Folfox (10 cycles)
Initial CEA 5608
CEA after 4 rounds 1319
CEA after 6 rounds 427
CEA after 9 rounds 95
HAI pump installed 06/20/23
Start FOLFIRI and FUDR 07/05/23
CEA down to 37
9/2023 Switch back to FOLFOX due to new lung nodules

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Joined: Wed Sep 28, 2011 11:46 am
Location: Seattle, WA

Re: Bad news on scans. Advise welcome

Postby annalexandria » Sun Nov 12, 2023 11:56 am

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. ... ase_ag.htm
Mom, librarian
Dx age 43, Sept. '09, Stage IV Carcinosarcoma of the colon
5 surgeries, 2009-2011:
colon/sm. bowel res., node removal, peritoneum, hysterectomy
FOLFOX/Avastin Feb.'10-Aug '10
Carbo-Taxol Dec. '10-Feb. 2011
NED since Dec. 2011.

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Joined: Tue Jan 29, 2013 4:14 am

Re: Bad news on scans. Advise welcome

Postby J-man » Sun Nov 12, 2023 7:57 pm

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

Posts: 94
Joined: Thu Jun 29, 2023 4:46 pm

Re: Bad news on scans. Advise welcome

Postby Bianca10 » Tue Nov 14, 2023 4:32 am

Bpaint wrote: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

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