Stage 4 Pancreatic cancer and supporting my son's choices

I think many of us, that have journeyed with this disease. Have been told similar.

Doctors can prescribe pre-meds and other things to make chemo more tolerable. Also, second opinions are invaluable. This is the time for him to do this before he gives up!

We must be our own advocates and understand that all doctors are not the same. Perhaps he can get to a Pancreatic Center of Excellence .

I have been on this journey since 2021. My faith and doctors that gave me hope with multiple options has kept my life fairly normal except those yucky chemo days!

@davyjohn, I can imagine that the thought of losing your son breaks your heart.

You mention that your son wants to try holistic herbal therapies. More and more cancer centers and oncology specialists are open to discussing and integrating complementary medicine in programs called Integrative Medicine or Integrative Oncology. Integrative medicince is offered at many cancer centers of excellence, including Mayo Clinic. It might help to discuss this with his cancer team so that he can find therapies that help relief symptoms.

Here's a link to more information about Mayo Clinic's Integrative Medicine programs
– Integrative Medicine and Health https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567

As a parent, you want to know that you've tried everything. It can be hard to accept the choices of a loved one and I admire your resolve in doing so. I'm glad that hospice has been brought in. There are many supports for family members as well as keeping the patient comfortable. I encourage you to ask when is available for you and other family members in terms of personal and group supports through the hospice. They will keep him comfortable.

Many people are talking about the use of Ivermectin and Fembendizole for treating cancer. Has anyone heard or used these treatments?

@davyjohn, I moved your question about alternative approaches to the original discussion that you started about your son's choices and living with stage 4 pancreatic cancer.

Fenbendazole and ivermectin are an antiparasitic drug used in veterinary medicine to treat animal gastrointestinal parasites. There are many stories circulating on social media about using it to treat cancer because preliminary research is investigating their use in cancer.

The use of fenbendazole for cancer is still experimental (in mice), and more studies are needed to determine its success and safety in humans.

Untested treatments can do harm. When we read repeated stories of success about this or other unproven treatments that circulate widely, the repetition can give the appearance of - it must be true or everyone is doing it.

As @stageivsurvivor said in another discussion here https://connect.mayoclinic.org/comment/1186515/:
“Think carefully as drug/drug and drug/supplement interactions can have consequences. Damage to the liver would mean having to pause chemo. Permanent damage would terminate cancer treatment. Bad decisions can have bad consequences and there might not be a “do-over” moment.”

Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community or on social media.

Thank you for your well written comment . Living through this either oneself or supporting a loved one it’s so easy to turn to a solution as life sometimes becomes a series of desperate choices .

Please be careful about advice from the internet echo chamber.
https://www.anticancerfund.org/en/blog/separating-fact-fiction-repurposed-drugs-cancer-treatment

If a stage-4 patient has already been told, "There is nothing else I can do" by his oncologist, and the patient has elected to stop conventional treatment and accept services by Hospice, I see "little harm" in trying an alternative treatment.

* "little harm" in this context means compared to the side effects of a chemotherapy regimen the patient has been unable to tolerate, or compared to letting pancreatic cancer take its course without treatment, and assumes the alternative treatment has some known pharmacokinetics and safety profile.

DISCLAIMER: I have ZERO medical training.

Some western doctors seem to suffer from "CDD" (Curiosity Deficit Disorder). Oncologists in North America are very tightly constrained in terms of what they're allowed to say without putting a license and a career at risk. Anecdotal evidence is the closest thing to no evidence at all, but I personally believe anecdotal evidence should provide motive to follow up with trials seeking definitive scientific evidence. Unfortunately, pharmaceutical companies are unlikely to fund trials for generic, off-patent drugs, creating the Catch-22 of stagnation of research into drugs and methods with potential.

I have personally tried Ivermectin (approved for human use) in very small doses in conjunction with my chemo, based on a paper which reported a synergistic effect in vitro and "in vivo" (mice infected with human PDAC lines) when combined with Gemcitabine. My scans and CA19-9 appear to have remained stable during the time I tried this, and my CA19-9 has exploded since I stopped. I'll have new scans soon that will reveal more data. If there is definitive evidence of disease progression at that time, and I can't get into an appropriate clinical trial, then I plan to begin taking larger doses of Ivermectin until something else comes along. Weekly blood tests are part of my ongoing care, so we'll know in short order if there are any problematic side effects. Depending on the outcome of 2-3 months of Ivermectin, I will consider adding Mebendazole (approved for human use) to it, unless I'm admitted to a clinical trial.

At this point in my life, I've had 3 surgeries, radiation, and close to 60 rounds of soul-destroying, week-in-bed chemo with only moderate disease control and nothing close to a cure, including a world-class clinical trial last year driven by some of the best science and scientists in the world that completely failed. If I can't get into another meaningful trial, I see little for myself to lose by trying alternative snake oils and quackery (as long as I'm in control over my spending and monitoring my bloodwork) compared to letting cancer take its course. I would rather provide another anecdotal data point (and honestly report its success/failure) for scientists and other patients to consider than just fade into the night as another statistic for standard-of-care treatment.

Thank you for your very honest reply. I have been following many of your remarks for the last couple months. Would you let me know how long you have been dealing with Pancan ?
Mt husband was diagnosed last July after months of testing and finally doing Distal Surgery.
they found a large tumor in the body and tail of the pancreas. He is stage 4 with metastasis
to the lymph nodes and the lungs. He had several setbacks with staff infections, pneumonia,
collapsed lung and drains for over 6 months. This has left him very weak and tired. Oncologist will not give him any treatment unless he gets stronger because she is afraid that
the Chemo would kill him. He also had Renal Cell Carcinoma 6 years ago and has heart issues.

I did a lot of research on Ivermectin because my daughter in Law suggested it to us. Oncologist told us she did not believe it would help at all. There appears to be so many
possible side effects with the Ivermectin that I am afraid to let him try it.

Did you have any side effects when you tried it ?

Thanks for any info you can give me.

@suelannon , sorry for the slow reply; I've been out of town a couple days.

Dealing w/ pancan since initial stage-II diagnosis 3 1/2 years ago. Six months of Folfirinox, then had the Whipple 3 years ago, reported all clear post-op, but had a recurrence that went metastatic 4 months after that. I've been on Gem/Abrax/Cisplatin the last 2.5 years with good control, except for the 4-month clinical trial break during which the disease advanced rapidly.

I only took "a tiny dose" of Ivermectin (12 mg) on chemo day in January and February, which was once every two weeks, and experienced no side effects, but my CA19-9 remained stable under 100 during that little two-month experiment. My CA19-9 has risen to about 500 in the two months since I stopped, and MRI this week found evidence of disease progression. Despite some correlation, I can NOT claim this is clear cause and effect -- it was not a well-controlled experiment, and I can identify several factors that may have had a role in my status changing.

Regarding dosing, the above amount (12 mg) comes to 0.16 mg / kg given my body mass of approximately 72 kg. And to repeat, that's only once every two weeks.

Some of the biggest Ivermectin proponents on the web are pushing doses of 1-2 mg/kg (which would be 72 mg - 144 mg every day; yes, that's 6-12 times the dose I took, and 14 times more often, so it's a significant increase with all sorts of potential side effects.

Some of the biggest Ivermectin proponents on the web also appear on https://quackwatch.org/ , so beware!

Since I have ZERO MEDICAL TRAINING, I won't recommend this to anyone, FULL STOP!

I've run into obstacles getting my own prescription refilled, so I have ZERO experience with it other than the small dose and short-term use cited above.

But I'm also running into obstacles with clinical trial applications, and being stage-IV with disease progression and chemo resistance, I remain open-minded about taking the risk FOR MYSELF, and I commit to posting the good, the bad, and the ugly if I get that far.

Stay tuned! 🙂

Thank you so much !