LDN apparently causing Progression-Free Survival on Metastatic Cancer

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LDN apparently causing Progression-Free Survival on Metastatic Cancer

by ToddlerFather on Thu Nov 22, 2018 01:07 AM

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The last 2 years, after being diagnosed with thyroid cancer metastases in the lungs, have been a journey into the limits of scientific knowledge. Curiously, I haven't found about LDN (Low Dose Naltrexone) in my research... it has been recommended by the psychiatrist that is tackling my depression. 

The LDN treatment uses a substance that is commonly used in high doses to fight opioid addiction, in a small dose to estimulate immune response. It starts with a ramp-up from a really small dose, going up to the target dose in a time that could be half a year or a year. 

What I came to tell you is that LDN seems to be working for me. It didn't show much signs of effect during the ramp-up, but with the steady dosage it made my main tumor marker, Tg, to go back almost a year in level. It was 212 in Nov/2017, 356 in Mar/2018 (pointing to an exponential growth that is commonly found in cancers), but then went down to 265 in July and 254 now in Nov/2018. 

While I can't say for sure it's the only possible cause, because I also increased my vitamin D intake from 3000 UI/day to 5000 UI/day, it's pretty much aligned with what is being reported in research. 

Information on LDN can be found at

https://www.ldnresearchtrust.org/

http://www.lowdosenaltrexone.org/

Will it work for you ? I don't know. It has been slowly getting some clinic trials and published papers, but since it's not patentable, it's more of a crowd-funding effort than an investment a company could make. But its safety is widely recognized, and one can gauge efficacy for him or herself. The only risk is to stop whatever treatment you are doing; don't stop anything, just add LDN to your toolchain. 

Next up, on doctor's suggestion, I will be adding alpha-lipoic acid, an antioxidant, to the mix. While I'll be taking it orally, there are those who take it intravenously... 

After starting in a condition with no known medication, following up trials that failed to show efficacy, these promising results from something simple, cheap and with no side effects are a relief. 

RE: LDN apparently causing Progression-Free Survival on Metastatic Cancer

by Swifty on Sun Mar 10, 2019 08:12 PM

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I am so happy for you and I hope that the progress in continuing. I was on LDN for a few years and went off at the Doctor's suggestion to take a break. Fast forward and I am newly diagnosed with a suspicious nodule. Not sure if I should go with LDN or CBD oil or both?!

RE: LDN apparently causing Progression-Free Survival on Metastatic Cancer

by ToddlerFather on Tue Mar 12, 2019 05:23 PM

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On Mar 10, 2019 8:12 PM Swifty wrote:

I am so happy for you and I hope that the progress in continuing. I was on LDN for a few years and went off at the Doctor's suggestion to take a break. Fast forward and I am newly diagnosed with a suspicious nodule. Not sure if I should go with LDN or CBD oil or both?!

Suspicious nodules became an usual diagnostic due to advances in medical imaging. Do not suffer by anticipation until it's confirmed as a threat to your health. 

RE: LDN apparently causing Progression-Free Survival on Metastatic Cancer

by Swifty on Wed Mar 13, 2019 11:05 PM

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So true. I feel that there are many nodules found due to increased preemptive screenings. The question becomes is that a good thing or a bad, thing. Catch something early or overdiagnose something that may never cause an issue. Meanwhile, I am calming down a bit from the initial report. My latest question is whether an FNA could potentially cause more trouble by disturbing the nodule?

RE: LDN apparently causing Progression-Free Survival on Metastatic Cancer

by ToddlerFather on Sun Mar 17, 2019 02:12 PM

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On Mar 13, 2019 11:05 PM Swifty wrote:

So true. I feel that there are many nodules found due to increased preemptive screenings. The question becomes is that a good thing or a bad, thing. Catch something early or overdiagnose something that may never cause an issue. Meanwhile, I am calming down a bit from the initial report. My latest question is whether an FNA could potentially cause more trouble by disturbing the nodule?

Both are true; the good thing is that more real threats are being early diagnosed giving a number of people more quality of life. The bad thing is that more people are getting concerned about non-threats, because now they know them, and overall cost of medicine is increasing, putting a strain on public resources and private family budgets. ??

As for your latest question, what was recently found was a connection between blood flow and cancer spread, which may add some concerns regarding surgery. But an FNA is more about destroying blood capillaries by sucking them among nodule tissue, so I wouldn't have this particular concern. 

RE: LDN apparently causing Progression-Free Survival on Metastatic Cancer

by Swifty on Sun Mar 17, 2019 02:29 PM

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I agree it is a mixed bag. The good outweighs the bad. Early diagnosis is key to many people's survival. Thanks for the reassurance on the FNA as I am 3 days out from my first one. I was fretting about it but decided I needed to know what if anything is growing in there. Then I can make a more informed decision going forward.
I do hear, what I feel are too many cases about TT surgery only to later discover there was no cancer after all. I can't imagine how that feels. In hindsight maybe I should have stayed on LDN as the first Doc said I should. New Doc, new plan. She decided I should go off. Choices.

RE: LDN apparently causing Progression-Free Survival on Metastatic Cancer

by ToddlerFather on Sun Mar 17, 2019 05:07 PM

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While the mechanism for LDN is yet unknown, which doesn't make a case for its use in support therapy, ThyCa is known for recurrence. Before being diagnosed with Stage IV, I was on TSH suppression, which is a known way to reduce recurrence. I'm still is, and I expect to be on it forever. I haven't made my mind yet for whether to also be on LDN for therapy support, but first I need to kill the enemy at hand. 

RE: LDN apparently causing Progression-Free Survival on Metastatic Cancer

by Swifty on Sun Mar 17, 2019 05:35 PM

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That sound like a plan and I admire your great attitude which will help you with the task at hand...Killing the enemy. I am rooting

for you. I have learned that a super low TSH is best to discourage ThyCa?  I wish JUST ONE of the many doctors I saw knew that.

My TSH levels don't look so 'normal" anymore.

2.10   0.18   3.30   2.34   2.06   0.49   2.24   4.11   2.89  2.75

RE: LDN apparently causing Progression-Free Survival on Metastatic Cancer

by ToddlerFather on Sun Mar 17, 2019 08:21 PM

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On Mar 17, 2019 5:35 PM Swifty wrote:

That sound like a plan and I admire your great attitude which will help you with the task at hand...Killing the enemy. I am rooting

for you. I have learned that a super low TSH is best to discourage ThyCa?  I wish JUST ONE of the many doctors I saw knew that.

My TSH levels don't look so 'normal" anymore.

2.10   0.18   3.30   2.34   2.06   0.49   2.24   4.11   2.89  2.75

Yeap, TSH suppresion helps. The reason for that is that most ThyCa are DTC (D for Differentiated), meaning that the mutated cells are not much apart from normal thyrodean cells and preserve some or most of their characteristics. One of them is to be more "excited" in the presence of TSH and more "calm" when TSH is suppresed. 

TSH suppresion is not much useful for ATC (A for Anaplastic) exactly because those cells stopped resembling thyrodean cells or for MTC (M for Medullary) because the original cells are from a very specific type that even normally wouldn't respond to TSH. 

TSH levels are controlled by the pituatary gland, based on the thyrodean hormone levels it sees in the blood stream. A nodule can have an effect either way on this. 

Also of notice is that your intake of Synthroid or equivalent should be based on weight; if your weight changed and you kept your dosage constant, that would mean a change from the actual need of hormone. The pituatary would try compensate for that by producing more or less TSH... so the variation you've seen could have an origin unrelated to the nodule. 




RE: LDN apparently causing Progression-Free Survival on Metastatic Cancer

by Swifty on Sun Mar 17, 2019 09:50 PM

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So I have learned again today... thanks for sharing your knowledge. Stinks that we need to know any of this :( I am not on any thyroid meds. The only time I took any was when a functional doctor discovered an elevated Reverse T3 and I did a round of T3 only. The Reverse T3 normalized and has stayed that way. The rest of the time I was told: "all the numbers are in range you are fine." I finally insisted and was tested for antibodies and they were high so I got that diagnosis. That is when I tried LDN. I also seemed to have a reactivation of the Epstein Barr Virus which I have learned may be a trigger for the Hashi's and the nodules.  

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