This topic contains 13 replies, has 6 voices, and was last updated by Anonymous 6 years, 6 months ago.
April 18, 2012 at 5:11 pm #3499
April 18th, 2012:
My mother, a young 66 years old and in good health, has been recently diagnosed (April 6th) with Stage IV Pancreatic Ductal Adenocarcinoma. The ERCP procedure indicated a 2.3 cm x 2.9 cm attached to the tail section of the pancreas. The majority of the tumor is external to the pancreas, but has invaded a small portion of the pancreas. To this point, the only other involvement is in the Lymph system. There are many lymph nodes that are involved and several that are quite distant from the pancreas (biopsy of a node in the neck indicated positive for adenocarcinoma). However, some good news in all of this is that there are currently no other major organs involved. The oncologist felt that there would likely be other organs (stomach, spleen, possibly lungs) pretty soon if it's left to advance on it's own. He also indicated that she was not a candidate for any type of surgery.
My mother was given the diagnosis of 6-12 months without Chemo and up to 18 months with Chemo. The doctor recommended the 'cocktail' chemo that includes 4 new and extremely strong chemicals. He also stated that should my mother elect to follow a lesser strength regime that he would use the old standby of Gemcitabine. He warned that the Gemcitabine, while typically useful with pancreatic cancer, was very slow working and given the advanced nature of the cancer would likely work too slowly to really help.
This is when we found DCA. My sister and her husband has been researching DCA for a little while now and happen to have a friend that has been taking DCA for quite some time. He has been a brain cancer survivor for a few years and attributes some of that to DCA.
My mother has elected to forego the massive chemo onslaught in favor of the more well tolerated chemo (gemcitabine) but also with doses of DCA. We've seen several posts stating that DCA along with chemo is typically well tolerated. We're also hanging our hopes on the stories we're reading on the DCA sites whereby people have claimed excellent results from DCA alone and others with DCA and chemo. My mother is also taking Metformin (for decreased pacreatic function) so we're praying there are not adverse reactions to that)
As of April 17th, my mother is taking DCA and researching some other avenues within our region at local research clinics (large university clinics).
Her current dose is 10mg/kg/day. She's splitting this dose in half and taking half in the morning, mixed with cool water. Along with the DCA she's taking approximately 400mg of B1 and 4,000 units of D3. She then waits about 30 minutes and drinks green/black tea as much as possible throughout the day. She makes the tea with ionized water (pH of 8.9). She repeats this entire process in the evenings.
Our plan is to move her from 10mg/kg to 12mg/kg based on her level of tolerance as well as the interaction it may have with the chemo (once that is started). If she can tolerate the 12mg/kg well, then we'll move to 15mg/kg with the eventual dosing to be set at 20mg/kg should things go well.
Right now my mother complains only of some minor aches in her side (where the tumor exerts pressure) otherwise she's truly in the best health she's enjoyed in about 15 years. Cancer is a scary thing, she's never looked better yet she's sicker than she's ever been.
I'll try my best to continue to update our progress and findings. We're expecting some results back from a recent PET scan today. I'm looking forward to getting the marker numbers back to start a baseline to see where we go from there.
If anyone is reading this and has information about any part of it or just a comment, please don't hesitate to leave it here.
My mother is the heart of our family and we're fighting this harder than we've ever fought before. To all those locked in the same battle, God Bless and good luck.April 19, 2012 at 10:10 pm #4272
Hi 4mymum, I have no personal experience with this, but a friend of mine, a doctor, has worked in Ralph M. Steinman's research lab, he was postumously awarded 2011's Nobel prize in Medicine for his work in dendritic cells in adaptive immunity, and used his own protocol (this same discovery) to treat himself from pancreatic cancer. He prolonged his life for 6 years, after being given a very negative prognosis, and this same protocol is being used with some success in clinical trials. I wish I could help you more but am not very knowledgeable on the topic, but maybe you could ask the doctors that are treating your mum to do some investigating on this http://lab.rockefeller.edu/steinman/pdf/2003-ann-rev-immunol.pdf
All the best,
InesApril 20, 2012 at 9:17 pm #4273
you should consider dr gonzalez. here's a link to his site. he's had some good success with pancreatic cancer. non toxic as well.April 20, 2012 at 10:18 pm #4274
Consider LDN (do a google; LDN and cancer) read, read. Join the Yahoo Group "LDN for Cancer" and "Cancer Cured". Order Naltrexone (used to make LDN) from All Day Chemist in India after reading about it. Watch videos on YouTube on Dr. Bert Burkson (sp). Start supplementing with all of the standard stuff (ask on the "Cancer Cured" group). Start with lots of R-Lipoic Acid.April 26, 2012 at 8:21 pm #4287
@philb – Thank you very much for the link. Matter of fact I've now had several people recommend reading up on Dr. Gonzalez. I'm looking into that form of treatment as I understand it's not limiting and can be done concurrently with other forms of treatment. My mother is being a great sport about this and between myself, my father, sister and brother-in-law she's enrolled in or has inventigational information into just about every form of standard and alternative therapies.
@dholliday – We've already got her going on heaps of R-ALA along with many other things to include DCA. Wondering if you know of anyone else out there on those boards using DCA and LDN simultaneously?
Thanks for the information all – look forward to more info and a healthy mother.
God Bless.April 27, 2012 at 5:11 pm #4290
I am a medical oncologist. I have had nothing positive to say about my past experiences with Dr Gonzales in the two patients that he sent to me to follow. Both died with blatantly progressive disease. Whether Gonzales' treatment is uniquely responsive in the context of pancreatic cancer is an unknown to me. I just do not think there is any convincing evidence.
Some pancreatic cancers respond to LHRH-agonist drugs like Lupron that are mostly used in PC (prostate cancer) or in BC (breast cancer). These are easy drugs to use and there is some peer-reviewed literature that you should easily be able to find on pubmed at http://www.ncbi.nlm.nih.gov/PubMed/.
If this were my patient I would want a PET/CT scan with FDG to document how avidly the tumor is taking up glucose. I would also have wanted baseline tumor markers such as CEA (Carcinoembryonic Antigen), CA-19-9, CA-72-4 and if elevated used these to follow any treatment to see if they were falling to indicate response. The combination of DCA + Metformin should be OK and perhaps even synergistic. There is another drug called 2DG (2-deoxyglucose) which is definitely synergistic with Metformin. You would have to search to find if anyone is doing a clinical protocol with these two agents.
I used low dose Naltrexone years ago in conjunction with Dr. Bihari. I only treated prostate cancer and did not see activity with LDN.
There are a lot of clinics and docs using immune stimulating therapies. These clinics have grown in number. I have not come across any that upon my review of medical records appear to be using an effective regimen. I have no experience with Dr. Ralph Steinman.
I hope this is helpful.
Stephen B. Strum, MD, FACP
Board Certified: Internal Medicine, Medical Oncology
Specialist in Prostate Cancer since 1983
Member: International Strategic Cancer Alliance (ISCA)April 27, 2012 at 11:02 pm #4301
Dr. Strum -
Thank you so much for your reply. I'm quite a realist in all of this journey and I'm open to hearing absolutely everything. I've been leaning toward getting my mother onto something similar to Dr. Gonzalez's diet, but not 'lock, stock and barrell'. As it stands a blended 'veggies and fruits' drink every day would be an awfully good step in better nutrition if not for any other reason.
My mother's PET scan showed "avid activity in a supraclavicular lymph node with regional lymph involvement around the pancreas." Her CA19-9 was 30. She may be unresponsive on that test, but we're ordering up more blood work to include 72-4 and CEA markers. I'm going to do my best to keep updating here.
Right now she's staged at IV due to the distant involvement of the clavicular node, however the PET activity was unremarkable at most other locations in the body other than in the abdominal region. They also noted no lesions on any other organs in the region or elsewhere.
While this does fit the definition of Stage IV, we feel that it's about the best we could hope for within that stage as no mets have formed anywhere else yet.
I'll look into the LHRH-agonist drugs as a possible avenue. I appreciate the insight.
Since my mother is effectively refusing any chemo, we're going to exhaust the alternative methods.
This is her current list of medications (including prescriptions):
Metformin 1000mg twice a day
L-thyroxine 0.1mg daily
Pravastatin 10mg daily
Quinapril 20mg daily
HCTZ triamterene 75/50 1/2 tab daily
Prilosec OTC 20mg daily
DCA 775mg twice a day, 5 days on / 2 days off
Alkaline ionized water 3L/day
Essiac tea1/2 tsp per serving, twice a day
Caffeine 250-300mg/day (in divided doses)
Vit B1 250mg 4 times a day
Vit D3 10,000U twice a day
Vit C crystals 5000mg daily
Alpha lipoic acid 100mg 3 times a day
Fish oil 2 x 950mg twice a day
L-arginine 1000mg twice a day
Glutamine 500mg daily
Evening primrose 100mg daily
Blue green algae up to 4 doses per day
Goji berry juice 30ml daily
Acai berry juice 30ml daily
Right now we're looking at starting her on Tetrathiomolybdate (TM) along with the LDN. They seem to be gaining a little traction with these items up in Toronto at a clinic that does some testing with DCA.
Any further advice is always accepted (and respected).
God BlessApril 29, 2012 at 5:17 am #4305
Would not use arginine or glutamate since former stimulates angiogenesis and the latter is a fuel for cancer cells. I never found Essiac tea to be worth anything but it tasted pretty good. The form of lipoic acid that is recommended is the R-lipoic acid. Not sure of the value of Goji or Acai–mostly multilevel marketing hype, in my opinion. The clinic in Canada is probably Medicore per Dr. Khan. He seems reasonable in my conversations with him. I wish you and your mom the very best. Make sure you tell her how much you love her and how much she has meant to you. Get recordings a la videos. Both my parents are gone and I can't begin to tell you how devastating loss of a parent is; the absence never goes away.
My best regards,
Stephen Strum, MDJune 6, 2012 at 4:42 pm #4342
Thank you very much for the input. I've removed the Glutamate from the regimen.
The neuropathy is getting a bit worse as she's now suffering from trembles in her hands. She indicates it's not painful and that she's okay with this level of side effect given the hope that the DCA is doing the job on the inside. She goes in for her second PET scan in about 30 days. Should be quite telling at that point.
Right now, her labs have been as follows (the three sets are tests done 4/10 – 4/17 – 5/22):
- WBC 4.8 5.5 5.0
- RBC 3.4 3.5 3.4
- HGB 10.1 10.3 10.3
- HCT 29.7 30.4 29.9
- MCV 87.8 87.6 88.0
- MCH 29.7 29.6 30.3
- MCHC 33.9 33.7 34.4
- RDW 14.8 14.6 15.2
- PLT 200.0 241.0 234.0
- MPV 7.7 8.0 7.0
- Neu % 70.6 67.3 68.5
- LY % 17.6 23.5 20.7
- MO % 9.3 7.8 8.9
- EO % 1.3 1.0 1.0
- BA % 1.2 0.4 0.9
- Neu # (ANC) 3.4 3.7 3.6
- LY # 0.8 1.3 1.0
- MO # 0.4 0.4 0.4
- EO # 0.1 0.1 0.0
- BA # 0.1 0.0 0.0
Chemistries (have only 4/10 – 5/22)
- Glucose 123.0 97.0 (she is non-insulin dependent diabetic)
- BUN 16 14
- Creatinine 0.6 0.8
- Sodium 139 140
- Potassium 4.3 4.2
- Chloride 100 100
- CO2 30 32
- Calcium 9.6 9.8
- Albumin 4.6 4.5
- Tot protein 7.0 7.1
- Globulin 2.4 2.6
- Tot Bilirubin 0.5 0.5
- Alkaline phospatase 49 58
- SGOT/AST 14 14
- SGPT/ALT 9 7
- GFR >60 >60
- CA 19-9 30 N/A
- Ceruloplasmin 0 0
I believe she's non-reactive to the CA19-9 as it's quite obvious that the tumor is there and involving the pancreas (distal and somewhat superficial) but the marker is quite low.
She's anemic, which is obvious by the counts. We have her on oxygen during the night to assist with saturation. Resting saturation is around 90.0% while not on oxygen. 97.0% when on oxygen. The way I've understood it is that oxygen is excellent in assisting the body with battling the cancer.
My mom is still in good spirits and it's now been 60 days since she got the word that she has only 90 days left. She appears as healthy as ever (though we know what's lurking underneath). She's actually sleeping better than she has in many years.
Fingers are crossed for the next PET.
God Bless all of you locked in this same battle. You're all in my and my family's prayers.
(edit to better line up the columns – tried my best but the HTML formatting wreaks havoc)June 13, 2012 at 6:31 am #4345
You seem to be really on the ball, so I am going to make a few suggestions without having any special knowledge of pancreatic cancer specifically. Do a bit of research before following up on these suggestions.
First, I am skeptical of combining DCA with Metformin. Metformin is sometimes referred to as "mitochondrial poison" and inhibits their function. DCA is supposed to stimulate mitochondrial activity. Also, lactic acidosis is a sgnificant effect of Metformin whereas DCA inhibits lactate production. It's possible there's a synergy there, but it's not intuitive to me.
Anyway the proof is in the pudding. Here's a study of DCA with and without Metformin in mice. DCA alone had the best effect on breast cancer; DCA + Metformin was worse than DCA alone, and if I'm reading it right, even worse than the control group.
Also, I have previously posted in this forum that vitamin B1 has been identified as a tumor promoter and may be counterproductive.
And here are some significant anticancer supplements that I'm not seeing mentioned in this thread: curcumin, quercetin, genistein, melatonin, lactoferrin, CAPE (aged garlic). Also possibly EGCG supplements, as it's hard to get to a therapeutic dose by drinking a few cups of green tea per day.
Finally, look at Chloroquine, an anti-malarial drug that is one of very few available drugs that inhibits autophagy. This causes the buildup of toxic substances such as "reactive oxygen species" in tumor cells, which makes it synergistic with many types of chemotherapy. It has also been reported to be a promising therapy for pancreatic cancer. I assume it's a prescription drug and it's not without any side effects, but millions of people including myself have taken it for extended periods of time to ward off malaria, so in general it has a good safety profile.
Good luck.June 14, 2012 at 11:53 pm #4347
JMM – Thanks for the information. I'll look into each of the items you've listed.
Do you know, or happen to know a good source for, healthy therapeutic dosages for each of the supplements you've listed? It seems like a bit of a crap shoot looking out on the web as some will say 2000mg/day is okay, but others will warn vigorously against anything over 100mg/day of the same supplement. I've been pouring over all the blogs to determine the best for my mother, but I'm worried I might be off on some of the supplements.
I'm using Matcha Green tea for the EGCG now. But I'll look into the supplements to see if that's a more effective manner. I agree that a couple green tea drinks thoughout the day really don't do the job.
With respect to the Metformin; she's taking it becuase it was Rx by her Dr for her adult diabetes. Now, that was a while ago and before her PanCan Dx so it may warrant another look by her Dr.
Thanks for any additional information you may have. (or anyone else for that matter).
-VJune 15, 2012 at 1:37 am #4348
Yes, if the Metformin is medically required then I wouldn't go off it, certainly without consulting a doctor first. It does have anticancer properties on its own, and it may well synergize in some way with DCA or some of the other supplements being taken.
Re dosages : One thing you can try is to look up the results of clinical trials of those supplements. That should give you an example of what is considered to be potentially a therapeutic dose, and there should also be some indication of what kind of toxicities were encountered. IMO it's better to do this than try to scale up the effective dose for a mouse.
The only one I know offhand is curcumin, for which 8g/day is a common dose for people fighting cancer. Of course she would work her way up to that level, and she might find it to be too much in combination with everything else on your list.June 19, 2012 at 12:21 am #4350
I should also add that the current dosage of DCA is 18mg/kg/day.
In speaking with her today, she stated her neuropathy was "not too bad". So we're leaving her where she's at with the DCA.
We've now placed her on 3,000mg of Curcumin per day, split up in three dosings. We've also ordered the Quercetin.
We're looking very closely at beginning the Dr. Gonzalez therapy of Pancreatic Enzymes along with the diet. We fear, however, that this may conflict with some of the treatments she's currently persuing (DCA, LDN, TM, Varied Supplements). I have not found any evidence in my research (online only) of any conflicts, but I don't take that as meaning there aren't any.
She had recent labs returned and all of them show normal with the exception of her red blood cells and hematocrit. She's still anemic.
Also interesting is her WBC count has been steadily declining. I would have susptected that the DCA would have helped her white blood cells to zero in on her cancer thereby increasing the WBC count due to the body beginning to fight the cancer as if it were an infection. Maybe I have a misunderstanding of the exact way DCA works or possibly the way the WBC's work in conjunction with DCA. Anyone have any information on this?
We're now 10 weeks into the diagnosis period of having only 12 to 24 weeks to live. My mother is still in very good physical health (given the obvious issue with the disease). Our prayers continue.
VinceJune 19, 2012 at 6:49 am #4351
I don't think DCA directly relies on the immune system. It changes the metabolism of tumor cells, causing internal stress and hopefully cell death.
Since your mom is on Gemcitabine, here's an article about an enzyme called PEGPH20 that has shown synergy with Gemcitabine in clinical trials. It breaks down a substance that pancreatic cancers surround themselves with in order to protect themselves from chemotherapy and immune attack. I do not know if the enzyme is generally available. Ask her doctor.
Scientists Break Through Pancreas Cancer Treatment Barrier
A different kind of drug that is also synergistic with Gemcitabine is Celecoxib (Celebrex). A quick web search should bring up a few studies. Celecoxib is remarkably active against a variety of cancers, and has extremely low toxicity.
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