Pancreatic cancer stage 4 / whipple aborted/ chemo?

23 Posts | Page(s): Prev 1 2 3  Next 

RE: Pancreatic cancer stage 4 / whipple aborted/ chemo?

by VAgirl2 on Fri May 09, 2014 11:03 PM

Quote | Reply

Hello Nico:

So very sorry about your Dad's situation.  Stage IVb pancreatic cancer is very scary and has a dismal prognosis despite the most aggressive treatment (even stage I only has about a 10% 5 year survival rate).  But there ARE people who survive for 10 to 15 years, and the doctors are studying those people to try and figure out why they survive and others don't.

I was diagnosed with stage 4b pancreatic cancer (mets to liver) in mid-Dec 2014 and am currently undergoing FOLFIRINOX chemo regimen guided by Mayo Clinic in Rochester, MN and with periodic tests and scans at Mayo.  However, I am having most of my intermediate chemo treatments at a local chemo facility, overseen by a medical oncologist that I like very much.  I had one local false start with an arrogant, incompetent, jerk oncologist who apparently did not wish to be 2nd fiddle to Mayo and who sent me into chemo with no written doctor's orders for the premeds (I caused quite a scene in the chemo lounge when I realized what was happening; I cannot imagine how sick I would have been had I not been alert and aware of what the nurse was preparing to hook me up with).  You can be certain that I have filed a complaint with the hospital against this doctor and will probably file a complaint with the state medical ethics committee.

Fortunately I was in excellent health when diagnosed and have been tolerating the chemo exceptionally well (top 3% according to my Mayo oncologist).  My initial chemo was unfortunately delayed until 3rd week in Jan 2014 due to a severe case of bronchitis, so the liver tumors grew quite a bit from diagnosis to beginning of chemo, but after 7 chemos, pancreatic tumor has shrunk and liver tumor growth has slowed considerably (some have shrunk).  An expandable metal stent was placed in bile duct during one of the initial diagnostic procedures (ERCP).  

Many of the alternative therapies that you cite are bogus, ineffective, and perhaps even dangerous.  Discuss them with a reputable oncologist and certainly do not use them in place of chemo.  In particular avoid:  Laetrile, Gerson Diet, any clinics in Mexico.  

Be wary of anything that is too heavily advertised - for example The Cancer Centers of America.  A few people seem to have had very good experiences with them, but many have not.  I suggest you read the Wed 06 Mar 2013 article by Reuters entitled "Special Report: Behind a Cancer Treatment Firm's Rosy Survival Claims."  For more information on this chain of for-profit hospitals, Google "Complaints Cancer Treatment Centers of America." 

The professional nutrition advice that I have received includes (1) eliminate red meats, eliminate dairy, eliminate refined sugars, eliminate all seared and grilled meats of any kind; avoid products containing high fructose corn syrup and agave syrup (these are processed very differently than fresh fruits and glucose and have been associated with a doubling of the risk for pancreatic cancer); (2) focus on includng eggs, fish, fresh vegetables (particularly broccoli), fresh fruits of all kinds (sweetness doesn't matter); actual fruits & vegetables are better than the related juices; (3) drink 3 liters of water per day (I like Fiji water; it is very slightly alkaline and has no flavor like some bottled waters tend to do); (4) avoid probiotics during chemo (this was a surprise to me).

If you want to try supplemental nutritional vitamins and foods, the only vitamin supplement that I have been using for years and continue to use with the approval of my Mayo oncologist is Sublingual B-Total, a liquid combination of B vitamins that you put under your tonge.  I buy mine over the internet for about $10.00 for a two-month supply.  (Again, be wary of vitamin supplements or other products that are heavily advertised and cost hundreds of dollars per month).  I have also added a food that I use in moderation, just as an additional ingredient in moderate quantities to omelets, soups, etc.  Don't know if it is helping or not:  Maitake Mushrooms that I purchase mail order from Mushroom Hunters of the Midwest, 3163 Heritage Pkwy, Elgin, IL 60124 (look them up on the internet).  These were recommended to me by another person dealing with cancer who also uses them as a supplement to chemo, with her doctor's blessing.  DO NOT purchase mushrooms or supplements from Chinese or out-of-US sources.

It should go without saying that smoking and alcohol consumption are definite no-nos now.  

The most effective (and most toxic) chemo for pancreatic cance is FOLFIRINOX.  If/when this is no longer useful for my cancer or if a time comes when my body will no longer tolerate it, my oncologist will probably switch me to a Gemcitabin / Abraxane regimen, unless something new and better comes along.  Also, at the June 2014 European Society for Medical Oncology World Conference in Barcelona, Spain, Merrimack Pharmaceuticals will present the results of their Phase III clinical trials of MM-398 (irinotecan nanoliposome), 5-fluorourcil (5FU), and leucovorin, which showed very positive results; this new regimen is expected to be submitted for FDA approval in 2014.  And who knows what else is in the drug pipeline, if we can only hang on.

I recommend checking out the Pancreatic Action Network.  They are a legitimate, responsible organization and may have an active support group in your area.  They send out periodic e-mail info that is very informative.

After my very thorough investigation, here is my advice:

(1) Look for the nearest-to-home facility that has the most experience (and high volume) treating your dad's condition. Make certain from the beginning that you are comfortable with the medical oncologist.  Check out the ambiance in their chemo lounge.  You don't want a place that is like a cattle processing yard (cram-packed and overly busy).  Good lighting, good acoustics, calm atmosphere are very important.  Pancreatic cancer regimens tend to make for long days.

(2) Get your dad on the strongest chemo that he can tolerate as soon as possible.  And drink that water, especially the immediate 2 or 3 days before chemo, during chemo, and for the 2 or 3 days after chemo.  I believe that (plus the pre-meds the oncologist gives during chemo) is what has helped me with the minimal chemo side-effects I have experienced.

Blessings to your Dad, you and the rest of your family,

Jennie

RE: Pancreatic cancer stage 4 / whipple aborted/ chemo?

by Bryan51 on Sat May 10, 2014 01:50 PM

Quote | Reply

On May 07, 2014 7:48 PM al216 wrote:

On May 07, 2014 7:30 PM Carien wrote:

Hi Nico, yes there is such a wealth of info on 'how to cure your cancer' through diets and supplements and complementary treatments... and sometimes they contradict each other. I think personally that there is no such thing as THE truth in this matter, we all seem to react differently so I guess you will have to research all you can and make the choices you feel fit you and your father. 

I can only tell you what I do (and 'performing' beyond expectation so far) and I am sure all people here will have their own and different 'schedules' and 'strategies'. Mine: no sugars, no refined products, heaps of veggies, no meat, all organic, bread only sourdough and very little etc, etc. Budwig only for breakfast, daily bittermelon, ayurvedic medication including curcumine, selenium supplement, green powder (spirulina etc) drink, daily walk outside 1 hr, daily yoga. I did not refuse regular therapy, had folfirinox and radiation therapy so far.

Carien,

Happened to read your post, what is budwig, bittermelon, and curcumine and where can i find them?

In the states you can call a local Indian market and purchase it. I live in Louisiania and purchased seeds. From evergreen seed company. It is so warm here they grow very well like a cucumber, I juice my bitter melon. Bryan

RE: Pancreatic cancer stage 4 / whipple aborted/ chemo?

by debistalnaker on Sat May 10, 2014 09:43 PM

Quote | Reply
You might check in to Low Dose Naltrexone. It super boosts your immune system. Info on line says you can take in conjunction with Chemo. I have a lot of info compiled if you would like me to send it. Too much info for a post. My Bedt, Debbie

RE: Pancreatic cancer stage 4 / whipple aborted/ chemo?

by Pdass on Fri May 16, 2014 12:02 AM

Quote | Reply
Hi Debbie, My husband is on folfirinox following whipple. He just had a scan and found a few spots on liver. I was wondering if you would share some of the info you have compiled on alternate therapies while on chemo. I have read about bitter melon, ahcc as well as cannibas oil. We are new to this and any help you can share would be invaluable. Thank you. Patty

RE: Pancreatic cancer stage 4 / whipple aborted/ chemo?

by Pdass on Fri May 16, 2014 12:02 AM

Quote | Reply
Hi Debbie, My husband is on folfirinox following whipple. He just had a scan and found a few spots on liver. I was wondering if you would share some of the info you have compiled on alternate therapies while on chemo. I have read about bitter melon, ahcc as well as cannibas oil. We are new to this and any help you can share would be invaluable. Thank you. Patty

RE: Pancreatic cancer stage 4 / whipple aborted/ chemo?

by debistalnaker on Fri May 16, 2014 12:39 AM

Quote | Reply
Hi Patty, Send me your email address in a private email and I will send you what I have. Debbie

RE: Pancreatic cancer stage 4 / whipple aborted/ chemo?

by naponya62 on Fri May 16, 2014 03:34 AM

Quote | Reply

Hello Debbie,  My name is Fran.  I was brousing the net today because I was diagnosed with VIN-111, and I ran across your post.  Last year, I searched over 4000 hours on my Mac to try to find a cure for pancreatic cancer because my aunt's cancer was inoperable.  Adenocarcinoma seems to be fed by glucose.  My research found bitter melon, dandelion, and nigella sativa (black cumin seed oil).  She consulted a naturopath, and he had her doing organic coffee enemas and drinking raw vegetable juices.  The whites of her eyes went from being yellow to as white as a sheet.  The Naturopath was using Dr. Max Gerson's protocol of juicing and coffee enemas.  There is a movie on netflix "The Beautiful Truth" that explains some of his findings.  NAC N-Acetyl Cysteine is also used to detoxify the liver.  I have multiple sclerosis, and I have been using alternative medicine for it for years.  There is a great deal of research on vitamin D (hormone) now, and they are finding it effective for many different illnesses.  I started using it to try to stop my MS attacks years ago and now research data is coming in that confirms its efficacy.  Tumeric, raw vegetable juices, including cabbage, kale, beet and others are being used against cancer.  I hope this information will help in some way and that your husband recovers.  God Bless   Fran

RE: Pancreatic cancer stage 4 / whipple aborted/ chemo?

by naponya62 on Fri May 16, 2014 04:18 AM

Quote | Reply

P. S.

oops,  I forgot something.  There was a treatment that was supposed to reduce the harmful effects of chemo and is being looked at for cancer.  Dr. Burt Berkson recommended introvenous alphalipoic acid/low dose naltrexone. That might be something to look into.  Sorry I forgot.  Fran

RE: Pancreatic cancer stage 4 / whipple aborted/ chemo?

by Pdass on Fri May 16, 2014 03:13 PM

Quote | Reply

Fran,

Thank you so very much for sharing this information.

Patty

RE: Pancreatic cancer stage 4 / whipple aborted/ chemo?

by Cathy3100 on Wed May 17, 2017 01:28 PM

Quote | Reply

Good morning. I just read your post and the same thing just happened to my dad (also 64). He was all set for the Whipple surgery last Wednesday (05/10/2017) at John Hopkins...Looking around laparoscopically, the surgeon saw no spread and continued with the surgery. However, after cutting him open, they then found a small tumor on my dad’s stomach lining and aborted the surgery. This was such a blow to my dad and my family. Now we are focused on helping him heal from the surgery….He was just released from the hospital the other day, and meets with the doctors this Friday to start a new plan of attack. Hoping that new plan shrinks the tumor on stomach and in pancreas enough to maybe try the Whipple again if that is possible. My dad too is an amazing man with so much more living to do. This entire process has been so heartbreaking, and seeing him after surgery was such a reality check for everybody. He has looked so good through chemo, and we all assumed that this Whipple would work. It has been a crazy week, and now I am on a mission to find a new way.

You and your family stay strong!

Regards and prayers,

Cathleen

23 Posts | Page(s): Prev 1 2 3  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.