(Old Thread request)
My then 62 year old mother (never smoked or drank) was diagnosed with unresectable pancreatic adenocarcinoma nearly two years ago now. Given the fact that she is still alive, she has beaten the odds but of course we want more. Initially (Sept '12) she was prescribed gemcitabine/capecitabine to which she responded favorably (as indicated by her decreasing ca19-9 levels) and then underwent chemo-rad (with capecitabine) in Dec'12. By February '13 the tumour had shrunk to the point where surgery was attempted but unfortunately it had invaded the SMA and could not be removed. She resumed gem/cape in April '13 and continued until based on her bloodwork the decision was made in Dec' 13 to discontinue and switch to a second line, in this case, FOLFOX. For logistical reasons (stint, weather delays, etc...) she only started this treatment in March 2014 but her CA19-9 levels have been all over the map which leads me to wonder if the disease is becoming unstable.
I had asked the Dr. about the possibility of REOLysin, LDN and AHCC but seeing as how none of them are part of the standard treatment regimen, he would not consider them at this time. He did suggest that he may be willing to persue REOLysin at such time that he had exhausted his other standard protocol options.
Recently, I aquired my own supply of LDN (4.5 mg) and AHCC (500 mg) and Mom has been taking them for the past week or so. I am hoping that at least the LDN may increase her endorphin levels and that the AHCC may increase her dendritic cell count.
Fri, 04/18/2014 - 04:43
<p>In terms of mechanisms of action, etc.,</p><p>how likely is it that ascorbate (1) and REOLysin (2) could be successfully used with a re-challenge of gemcitabine (without the capecitabine).</p><p>In other words, does anything about the actions of REO and vit. C in the context of its usefulness as a treatment tool preclude their working together. Further, given that AHCC has been shown to increase dendritic cell counts (3) and LDN (4) and OGF (5) have at least shown potential, is there anything with regards to their mechanisms of action that would seem to preclude any combination of these being used together?</p><p> </p><p>1) http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0029…) http://clinicaltrials.gov/show/NCT00998322</p><p>3) http://www.ahccresearch.com/pdf/76_04.%202008%20(C-H)%20AHCC%20and%20DC…) http://ar.iiarjournals.org/content/34/2/973.short 5) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3942827/</p>
Fri, 04/18/2014 - 16:37
<p>Janine,</p><p>I understand all to well that it is not standard and if you consider all of the possible combinations that my "question" entails, an exhaustive repsonse itself would be rather lengthy. That said however, I am not really looking for specific answers as to whether any of the above combinations would improve Mom's situation but rather to understand the specific mechanisms of action that either of these individual components would/could have. For example, if LDN and AHCC are assumed to boost immunity would it be likely that REOLysin would be less effective since it is essentially a modified virus?</p><p>Also, Ihave somewhere (pretty sure it was a scientific paper) that ascorbic acid has been shown to "amplify" the effects of gemcitabine such that either the same dose can be given with stronger effect or the same effect can be acheived with reduced gem. If I am correct (in both remembering and interpretting what I think I read), is it "likely" that using the two with REOLysin (which has been used in trials with gem for PC) would work as well.</p><p>That kind of thing.</p><p>Dave</p>
Fri, 04/18/2014 - 14:27
Hello dave72, I'm sorry about your mom. It's such an overwhelming situation. I've ask a doctor to comment but I'm afraid it's not "standard" because there's just not enough evidence to say whether the combos would create better, worse, or neutral results. I hope she's does well for a long time, Janine forum moderator
Fri, 04/18/2014 - 18:16
Of course Dave, I didn't mean to minimize your thoughts. I just know a Grace faculty will do an excellent job at explaining the thought process of picking over the options available and the whys and why nots that most oncs put such great weight into data driven treatment decisions.
Even being known as maybe too rational a person I place a lot of rationelle into letting our bodies work through their problems on their own. Cancer's a different animal altogether and data becomes overwhelmingly important. There's no telling or guessing or supposing that a drug that kills cancer in a lab will work in a person. Even phase 2 clinical trials that have shown promising results all the way through the process have more often than not failed in the last, phase 3 trials; even to the point of proving more harm than good.
All that said I have a really good understanding of lung cancer treatment, I'm not in a medical profession and don't know how these drugs are viewed in pancreatic cancer. So we'll let our faculty comment on your questions. I'm sure you will walk away with a much better understanding of the subject. If not ask for more clarification. Your mom's a lucky person to have a son digging into this subject for her. Forums and websites like this are so new that most doctors are unaware that laypeople can have as good an understanding of treatment decision making as we can. Doctors like our faculty believe/know it takes more heads to gather the best info for treatment decision making. Cancer treatment is changing at lightning speed and doctors need to let us in, websites like ours need to be standard of care.
Best of luck,
Fri, 04/18/2014 - 19:59
I'm sorry you're facing this situation. Unfortunately, the faculty expertise is really only able to address the evidence we have. The potential interactions and mechanisms you're talking about are really so speculative that I don't think anyone with a particular expertise in pancreatic cancer would be inclined to make leaps in trying to presume how different insufficiently tested treatments might work together
Sat, 04/19/2014 - 11:41
I wanted to add this series of blogs about trials. All the best of luck,
Sat, 04/19/2014 - 18:47
Dave, I'm sorry to hear of your mother's progression. I'm also not a medical professional but a lung cancer patient. Not sure if you're in the medical field or just doing your own research which many of us do. However, I hope that you're informing your mother's oncologist of all she's taking as you don't know what could affect the chemo drugs and make the situation worse instead of better. Wishing your mom the best.
Take care, Judy
Thu, 02/20/2014 - 05:30
I apologize if I made you feel as though you were perceived as minimizing my thoughts, this wasn't my intent. Also, thank you for the links.
I am not a medical professional, simply a son trying to maximize my mother's quality of life in what I know to be a battle that we are almost certain to lose, barring a miracle of either divine or technological advance.
Thank you for your response. I understand that you are unable to offer speculative responses. I guess what I am looking for is non-speculative trials or theories which may result in actual studies.
I find it very surprising that when Mom had her biopsy and cancer was confirmed and I asked the oncology team about the histopathology results, all they could (would) tell me was that it was confirmed as adenocarcinoma. I am not an endocronologist but I assume that the pancreatic exocrine system is comprised of more than one cell type and that the cancer itself would likely have been predominantly found in one cell type moreso than others.
She is arguably atypical in that she responded to chemo (estimates of about 20% response rate were suggested) and is still alive and doing relatively well almost two years after diagnosis (which came very late - though that is a whole other story).
I realize that we are not lab rats and that extensive testing can cause more suffering than it alleviates but what seems to be missing in my mind is an approach which asks, what makes this person different than the others? Why is she still alive and why did she respond to the chemo when others are not and did not? To me, there is obviously something different about her or the tumour (in a physical and/or biochemical sense).
In the meanwhile, at the risk of sounding cynical, she is still subject to the standard "throw and see if it will stick" approach of standard operating procedures to address what is quite clearly not a standard situation.
Sun, 04/20/2014 - 07:31
I can't speak to why no further details were offered about the type of cancer, but a standard adenocarcinoma is what constitutes the vast majority of pancreatic cancers, though usually with some "immunohistochemical" protein markers on the cells that speak to their origin being from the gut as opposed to somewhere like the lung or breast or prostate. It's possible that it was poorly differentiated, which basically means that it was chaotic-appearing under the microscope and may not have had the protein markers that are typical for a pancreatic cancer. Usually, these can be differentiated from less common types of pancreatic cancer like an islet cell tumor, which behaves differently is treated differently.
Regardless, your point is very well taken about the potential value of trying to discriminate why some patients are "bright spots" who respond far better than others. By understanding the associations that make them so much greater beneficiaries of our treatment than many others, we should at least be able to predict which patients are best or least well served by receiving a given treatment, and perhaps we can improve outcomes for everyone by determining how those less likely to benefit will do better with another alternative, or a combination, etc.
We're not quite there, but this is where we're right on the cusp of going in the next 2-4 years. That may be cold comfort, but we're moving very much in that direction.
Sun, 04/20/2014 - 08:49
(I didn't see Dr. West's response while I was writing and posting this, but I'll leave it here in case it helps).
I understand your desire for more targeted therapy, and a method for determining which treatment regimen is most likely to be effective. Unfortunately, though in recent years advances have been made in identifying and developing treatments for mutations in some cancers, for many patients no such mutation is found. Just as sadly, since there are far fewer cases of pancreatic cancer than lung or breast cancer and as a result, a smaller market for new drugs, research progress is slow. And even for those who have an identified mutation with an established treatment, a certain percentage do not respond and eventually most patients progress and are faced with either trials of investigational drugs or what you describe - let's try this chemo and see if it works for this particular patient.
I'm sorry that the current level of medical knowledge falls short. I know that even in the 2-1/2 years since my wife passed, there have been research advances and drugs which I wish were available then, but all I can hope is that those advances accelerate and help current and future patients.