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Re: Beginning TIL Therapy at NIH Next Week
Posted: Mon Jul 10, 2023 3:41 pm
by utahgal7
pfccr,
Aren't you glad that you didn't agree with your one oncologist who wanted you to go on chemo for life? If I remember correctly, I believe you said she seemed to be a shill for big pharma.
Re: Beginning TIL Therapy at NIH Next Week
Posted: Thu Jul 20, 2023 8:10 pm
by rp1954
prayingforccr wrote:I’m blessed in that Ive had the financial resources, time, researching skills, decent scientific backround, tenacity and access to unbelievable doctors and treatments to get to this current state....
Dr D indicated, “ The good news for you is that your TIL infusion bag was HIGHLY heterogeneous with a large diversity of T-cell clones. This allows for a multi-pronged approach where the cancer will still be defeated even if it is able to evade one of those clones/targets.“
Not 100% sure on what this means, and if it is such a benefit, then why not prepare them that way for everyone?
Have you ever asked them for all your blood tests, especially the immune assays? I would.
You can probably learn to decode them with a little professional help, reading, and practice.
Do you have the past and future schedule of blood draws?
prayingforccr wrote:2000 mg fenbendazole dissolved in scant dmso and topped with grapefruit juice
3000 mg liposomal vitamin c
2000 mg liposomal curcumin
25 grams full spectrum cbd oil
1/2 teaspoon black seed oil (yuck)
200mg cimetidine taken twice a day hours AWAY from other supplements
2 teaspoons mushroom extract powder (Lion's Mane, Reishi, Cordyceps, Maitake, Shiitake, Turkey Tail, Chaga) added to morning coffee
5 clicks ivermectin dissolved in vodka topped with grapefruit juice every three days.
I am intentionally NOT doing the artemisinin protocol because the sodium butyrate really reduced my wbc count and I DO NOT want to wipe out any of the tils.
I had stopped ALL supplements/protocols 8 weeks prior to, during and 8 weeks after my TIL therapy at nih.
8 week scans were very promising (lung lesions reduced 40% linearly/80% volume) so I am resuming the protocol to kill these things once and for all.
In your position, if they are doing "big assays" every 3 or 6 months, it might create some opportunities to tune your stack, especially if you can squeeze in some of your own lab tests on whatever budget.
Re: Beginning TIL Therapy at NIH Next Week
Posted: Thu Jul 20, 2023 9:11 pm
by rp1954
prayingforccr wrote:rp1954 wrote:prayingforccr wrote:I’m blessed in that Ive had the financial resources, time, researching skills, decent scientific backround, tenacity and access to unbelievable doctors and treatments to get to this current state....
Dr D indicated, “ The good news for you is that your TIL infusion bag was HIGHLY heterogeneous with a large diversity of T-cell clones. This allows for a multi-pronged approach where the cancer will still be defeated even if it is able to evade one of those clones/targets.“
Not 100% sure on what this means, and if it is such a benefit, then why not prepare them that way for everyone?
Have you ever asked them for all your blood tests, especially the immune assays? I would.
You can probably learn to decode them with a little professional help, reading, and practice.
Do you have the past and future schedule of blood draws?
prayingforccr wrote:2000 mg fenbendazole dissolved in scant dmso and topped with grapefruit juice
3000 mg liposomal vitamin c
2000 mg liposomal curcumin
25 grams full spectrum cbd oil
1/2 teaspoon black seed oil (yuck)
200mg cimetidine taken twice a day hours AWAY from other supplements
2 teaspoons mushroom extract powder (Lion's Mane, Reishi, Cordyceps, Maitake, Shiitake, Turkey Tail, Chaga) added to morning coffee
5 clicks ivermectin dissolved in vodka topped with grapefruit juice every three days.
I am intentionally NOT doing the artemisinin protocol because the sodium butyrate really reduced my wbc count and I DO NOT want to wipe out any of the tils.
I had stopped ALL supplements/protocols 8 weeks prior to, during and 8 weeks after my TIL therapy at nih.
8 week scans were very promising (lung lesions reduced 40% linearly/80% volume) so I am resuming the protocol to kill these things once and for all.
In your position, if they are doing "big assays" every 3 or 6 months, it might create some opportunities to tune your stack, especially if you can squeeze in some of your own lab tests on whatever budget.
I’m headed up to nih aug 25-28
If you know my history, you know I am very much anti SOC unless its a last resort (and even not then) and am not afraid to explore alternatives.
That being said, I am not doing anything that might deplete/interfere with the tils.
I trust that they will continue to work, but my mind says it’s too good to be true.
The artemisinin protocol wiped out my wbc count because of the sodium butyrate, so while I consider that to be very effective, I am not screwing with this.
I’m living as if I’m cancer free, but the back of my mind is always afraid that the shoe is going to drop.
I see myself in bonus time and am very grateful.
I’m regretfully proud of how Ive conducted myself.
Ive had no choice.
I’ve made the best decisions for me and have been extraordinarily blessed in the care given to me.
I remember openly bawling/crying when Dr Stephanie Goff and Dr Aaron Dinerman accepted me into the til trial.
It was literally my only chance.
I will ask them for the immune assays if it might benefit the board.
I have to wonder if your " HIGHLY heterogeneous with a large diversity of T-cell clones" was due in part to the previous supplement stack.
Those assays already could have some off/on answers for you.
Yes, seeing and discussing them could benefit the board, too.
Re: Beginning TIL Therapy at NIH Next Week
Posted: Mon Jul 24, 2023 11:19 am
by Thedruid
I'm with you, RP1954
Since the first time PrayingforCCR made the comment he did not knew why the therapy worked so well with him, I thought it could be due the non-traditional treatment we was doing before.
Cheers,
TheDruid
Re: Beginning TIL Therapy at NIH Next Week
Posted: Mon Jul 24, 2023 2:07 pm
by roadrunner
Keep in mind that absent fairly extreme circumstances (e.g., immunosuppression related to organ transplantation) CRC pulmonary metastases are quite slow-growing. In many circumstances where many lesions “appear” at once, the phenomenon is best explained by lesions that have been too-small-to-detect passing relevant thresholds contemporaneously. That’s not to say many diverse factors didn’t (or couldn’t) affect growth or growth rate, but it can be a very difficult puzzle to solve.
I would think that the relatively rarity of your response (at least for past similar trials—I recall seeing a few complete or near complete remissions, but not many), the trial team will be very interested in your case, and trying to find evidence to support any theories they have.
Re: Beginning TIL Therapy at NIH Next Week
Posted: Tue Jul 25, 2023 4:28 am
by Peregrine
prayingforccr wrote:... I’m going to be asking some questions aug 25-27 when I head on back up to maryland for scans.
One thing you might want to look into before your August 25 meeting with the doctors is to check the link below to see if there is anything relevant about "Multimeric Binding" that might be relevant to your case. In your case, your cocktail of supplements might have had some kind of "Multimeric Binding" effect that enhanced your TIL outcome. (Just a suggestion... I'm not sure if it is relevant or not to your situation.)
IGM-8444
The potential of multimeric binding
Death receptor 5 is a member of the tumor necrosis factor receptor superfamily (TNFrSF) and is often expressed on the surface of cancer cells.
Strong activation of the DR5 pathway requires multiple receptors to be cross-linked simultaneously by an antibody or other binding agent to create an apoptotic death signal to the cell. Unlike traditional IgG antibodies, IGM-8444 has 10 binding units, giving it an advantage to cross-link multiple DR5 receptors at once, sending a stronger signal to cause cancer cell death.
Reference :
https://igmbio.com/pipeline/igm-8444/
Re: Beginning TIL Therapy at NIH Next Week
Posted: Wed Jul 26, 2023 12:34 am
by Peregrine
prayingforCCR wrote:... I will ask them for the immune assays if it might benefit the board...
I, for one, would be interested in knowing what your various Immunoglobulin levels are.
https://www.hopkinsallchildrens.org/Patients-Families/Health-Library/HealthDocNew/Blood-Test-Immunoglobulins-(IgA-IgG-IgM)-(1)
Re: Beginning TIL Therapy at NIH Next Week
Posted: Fri Aug 04, 2023 12:13 am
by MadMed
In clinical trials, the therapy seems to work more than 80 percent of the time.
What!
Re: Beginning TIL Therapy at NIH Next Week
Posted: Sat Aug 19, 2023 7:25 pm
by roadrunner
I am really hoping for continued good news. Your success with this therapy is an inspiration and, I hope, an indicator of the progress with TIL therapy they predict in this paper. I don’t suppose they tell you too much about their overall ongoing results, but their positive attitude toward you and your individual results has to be a tremendously exciting context clue. I wish you the best going forward!
Re: Beginning TIL Therapy at NIH Next Week
Posted: Fri Aug 25, 2023 5:04 am
by Markdale
Hey preyingforccr, sorry it hasn’t worked how we all hoped. You still have options, it’s great they’re still willing to operate. Hope you’re feeling well
Re: Beginning TIL Therapy at NIH Next Week
Posted: Fri Aug 25, 2023 5:31 am
by Rock_Robster
prayingforccr wrote:There is also discussion of repeating the entire treatment.
Sorry mate, not the news we were all hoping for. Still, it sounds like you’re nonetheless in a much better place than before this treatment. And the fact that you can even type that sentence confirms you’re one tough MF.
All strength and luck for the next wave of things.
Re: Beginning TIL Therapy at NIH Next Week
Posted: Fri Aug 25, 2023 5:35 am
by Markdale
prayingforccr wrote:Markdale wrote:Hey preyingforccr, sorry it hasn’t worked how we all hoped. You still have options, it’s great they’re still willing to operate. Hope you’re feeling well
The fact that they are willing to repeat the entire procedure is astounding.
omg was that a difficult, terrible experience and not one I am at anxious to repeat.
But I would give it one, last shot.
True mate, sounds like they believe in the science behind the treatment and they also believe you have a chance of beating this.
The way I see it is some shrunk so it could’ve worked on some micro Mets that are not visible which would be in your favour, they will take 2 Mets out reducing your load and possibly repeating the whole thing with an even bigger variety of TILS.
Re: Beginning TIL Therapy at NIH Next Week
Posted: Fri Aug 25, 2023 8:05 am
by Bianca10
prayingforccr wrote:CEA has increased every three months from 1.2 to 1.6 to 2.0 to now 4.2
Not good.
Hey,
Firstly apologies for the results but as others have said it sounds like your team still have options and are being relatively optimistic which is always positive!
I still don’t know how to very easily navigate this site so please forgive my ignorance, but if you don’t mind me asking, when the nodules were discovered was surgery not an option at all? I have read and understand you didn’t want to pursue chemotherapy.
Re: Beginning TIL Therapy at NIH Next Week
Posted: Fri Aug 25, 2023 9:35 am
by Bianca10
There were too many, Bianca.[/quote]
Really sorry to hear that, but fingers very tightly crossed for the coming weeks/months and the potential new plans.
Hang in there, you’ve got this.
Re: Beginning TIL Therapy at NIH Next Week
Posted: Fri Aug 25, 2023 10:28 am
by utahgal7
pfccr:
Wow, that's tough news. It's extremely consoling that the clinical trial doctors are willing to try again. That says a lot. Although the trial was difficult, I would definitely try again. Also, I think it is consoling that your doctors are NOT drawing a line in the sand by requiring additional chemotherapy. Look, I know you don't want to hear this and I know you are opposed to additional chemotherapy. Chemo sucks, I get it. I am on FOLFIRI now. It's not so bad, much easier than CAPOX.
I know there are some isolated cases where patients were able to be cured without ANY chemo, but those cases are few and far between. Every patient that I have known that has resisted chemotherapy, unfortunately, it wasn't a good outcome. It is something to think about.
Sending out positive vibes to the universe for you. Despite everything you are going through, I hope you have been able to enjoy summer.
Take care - Chris,
Paige