New supplemental drink might help...

Cindi
Welcome to our family and thanks for the informative update on Richard's progress post-whipple.  I had a whipple operation last May - to date my recovery is going well and I'm currently taking a number of scans to determine if the cancer has spread, the results of which will determine the next treatment plan.

Good luck

Gerry

Hi all, and thanks for the warm welcome!

To answer your various questions:

So far, Richard has stuck to the two drinks per day and is still liking the drink.  For him, even pre-cancer, that is progress.  He is just a person who tires easily of the 'same old thing' as far as food goes.  Always has been! 

As for his low tolerance of fatty foods - when he eats too fatty a meal, he gets nauseous for a little while, but it passes.  Mostly, he is paranoid that he will develop another pseudo-cyst and go through all of that again.  Since we are pretty sure that the p-s developed because he was eating too rich a diet in the effort to gain weight, he has become vigilant about the fat content of the things he eats.  Slowly, though, he is trying to increase the fat content in order to see what the limits are that his body can handle.  Right after the p-s, he was eating virtually no fat, but now is up to about 10 - 12 grams per meal and is tolerating that well.  Right after his surgery, and lasting for a few months, most foods didn't taste too good, but that has returned to normal.  Other than watching his fat intake, he can eat almost anything he ate before the surgery, just less of it.  This latest bout with the pocket of infected fluids and the antibiotics themselves decreased his appetite, but just in the last three days or so it has turned around and is nearlly normal.  We are learning that is the standard course of progression when dealing with this (anything pressing on his pancreas) and of course, antibiotics will always affect someone's appetite while taking them, no matter what the cause.  I didn't mean to imply that when he has gone through all these episodes, that he doesn't eat at all.  He does.  It's just that he eats so much less than normal, and things don't taste good.  It seems that decreased appetite goes hand-in-hand with a change in his taste sensations.  That results in him eating less and skipping snacks.

Consulting with a nutritionist is standard procedure at M. D. Anderson.  When you become a patient there, you have a whole team assigned to you, and long before you even meet some of them, they have been in on meetings about your case.  Our oncologist, for instance, knew every detail of Richard's case months before we ever saw him.  In fact, the surgeon felt that Richard didn't need chemo or radiation, but he was overruled in the team meetings by the oncologist and others, so that's why he went through it.  The nutritionist has been in on all those meetings, too.  She usually comes in on the visits to the surgeon.  At her recommendation, Richard takes extra iron tablets each day as well as Vitamin D.  Right now that's all he is taking, but we will probably start adding Vitamin B supplements as he recovers from this infection a bit more.  Since he also has acid reflux, and vitamins are hard on one's stomach, we do proceed cautiously when adding new meds/supplements.

He took his last antibiotics yesterday and is markedly better than when I first posted.  He snacked some yesterday and woke up wanting French toast for breakfast this morning.  That's progress!

Last April, when we went through the pocket of infected fluids, he was given Levaquin for it.  That was really hard on him - stomach hurt, intestinal discomfort, etc.  This time, the surgeon put him on two different antibiotics instead.  It's been easier on him by far.  Hopefully, not only will that be a bonus, but it will also be the key to clearing up the infection so it won't return.  As with the infections that set in after his surgery, sometimes it's more effective to use medicines targeted to specific bacteria rather than a broad-spectrum one.  I'm praying that this will turn out to be the case with this episode and that we won't have to deal with this again.  Three serious infections in the span of 10 months is enough! 

Gerry, are they going to do a PET scan on you?  Or are you getting CT scans?  Richard had a PET scan at the one-year mark and it was clear, and CT scans every three months post-surgery.  Those CT scans are now at only two or three per year, depending on how these pockets of infection are doing.  (His CA-19 markers have never gone up, not even pre-surgery.  Everything else is always haywire on his blood tests - liver numbers, sugar numbers, red & white blood counts, etc., but the doctors reassure us that is now his normal.  His protein levels were too low this past visit due to the decreased appetite, thus the drink, but they have been acceptable before, if somewhat lowered than 'normal' people.  That haven't been concerned about them before, at any rate.)

Here's hoping for good news for all!

Cindi

Cindi,
So glad to hear that the drink is helping Richard.
I need to gain weight, but because I have read that sugar feeds cancer, I watch how much sugar is in what I eat.  I can take Ensure and I don't thinkthe taste is too bad, but it is high in sugar.  How much sugar is in Enlive?
Theresa

Cindi,

Sorry, I have taken so long to thank you for your reply.  I must have missed it. Thank you for replying.  I did call Abbott Labs and get the information I wanted.
Like you, I do not think one nutrient is going to control the cancer cells, but I do try to watch what I eat, urban myths or whatever.  And like Richard, I can not afford to lose any more weight.  I find living with CC is a continuous  learning experience, and I appreciate all the information that I can get. 

I hope Richard is feeling better since your post  and that he will continue to
improve.

Theresa

Hey, Margaret, have you tried Carnation Breakfast Drink? The Hospice here recommends it highly and it takes the place of a full meal. Teddy really likes it and I add a Banana or etc.

Hi everyone,
Sorry it's been so long since I posted.  Much has happened, the vast majority of which is not related to our journey with cholangiocarcinoma.  We now have a new granddaughter!

To update y'all, Richard is progressing very well.  After my last posting, he did develop a flareup of the pseudo-cyst, but it was not as severe as the previous one.  However, in February of this year he was diagnosed as a borderline diabetic.  We had been advised from the start that with his cancer and surgery, that might be a development, so we were disappointed but not surprised.  Especially, of course, considering the fact that the Enlive drink contains so much sugar in addition to the nutrients. 

We immediately discontinued the drink, and altered our diet.  Richard began taking Glipizide tablets and went back to drinking an egg-white based protein drink (when he remembers to drink it).  Luckily, he only has to take the lowest dose of Glipizide they make.  The endocrinologist told him he might not need to take it every day, and to watch for symptoms of low blood sugar.  Sure enough, he had a few episodes of low blood sugar, but by monitoring his level, he can determine when he needs to take the medicine.

The biggest concern became the need to replace the supplemental nutrition lost by not drinking the drink.  What we found may amaze some of you. 

The Backstory:
A friend of my mother's has oral cancer and is also receiving her treatments at M D Anderson.  Because she was a model, and of course because of the psychological implications that facial surgery carries, all of her surgeries had been inside her mouth.  She has a prosthesis, but otherwise it is hard to even tell that she has ever had any problem.  This past spring, though, she was told that she was to undergo the last surgery that they could do on her.  I don't know if it was to be the last surgery period, or the last one from the inside of her mouth.  What I do know is that between being told she needed another surgery to remove tumor material, and the scheduled surgery, she began taking Manuka Honey.  When she arrived at M D Anderson for the surgery, they cancelled it because they could not find any evidence of any tumor!  They brought her back and ran all kinds of tests.  No cancer anywhere.  The only difference in her life that she made was taking this honey.  That got our attention.  Her surgeon's, too.  He is supposed to be looking into mounting a study about this honey due to the shocking results she experienced.

I did some online research on Manuka Honey after hearing this.  It is an all-natural honey from New Zealand, raw and unprocessed.  The honey is made from bees going to the blooms of the manuka tree, and for some reason it creates a honey that is off-the-charts more anti-bacterial than any other honey.  All honey is anti-bacterial, but this honey is just unbelievable.  There are tons of stories from people who have taken it for acid reflux, diabetes, used it on sores that wouldn't heal, psiorias, etc.  The University of New Zealand has run some scientific studies on the stuff, so it isn't all just anecdotal and hearsay, so that made me feel better.  But, even if no studies had ever been done on it, it's a natural food, and I knew it couldn't hurt to try it, so we did.  In our case, of course, we don't have to worry so much about cancer - his tumor was completely removed during his surgery, and there'd been no involvement of the lymph systems, so we've passed the two-year point where it would have shown up if it was going to come back.  So our experiment/hope was that it would help heal the pseudo-cyst and even help his diabetes.  Richard began taking it in the same dosage most people who take it for acid reflux take it - three tablespoons a day, sometimes four.  He puts it in his coffee.  It is a thick substance, more like molasses than the honey you buy in the grocery store.  It has a much more floral flavor than store-bought honey, too. 

The Result:
Richard had his regular six-month checkup/CT scan in late July.  Normally, when you have a test at MDA, you see the doc the next day for the results.  Because of scheduling conflicts on our part, we needed to wait a week, and then our surgeon lost his dad during that week, so rescheduling became a juggling act.  It was almost a month before we were able to go in for the results.  The nurse, the physician's assistant, the nutritionist, and the surgeon were all amazed.  Richard's scan showed the pseudo-cyst has reduced by at least 75% and he had gained almost 5 lbs!  They used the phrase "remarkable" several times!  In fact, the surgeon wanted to know about the honey and is planning to research it and possibly recommend it to other patients.  In addition, we have noticed that the skin on Richard's arms, which became much like that of a very old person's during his chemo and never got better, has suddenly improved.  It used to be that any little thing would cause a cut or scratch and/or bruise on his arm, and two weekends ago he worked on the car and came away with only one bruise even after lots of banging on parts under the hood.  The endocrinologist is all for him using it, Too, as long as he monitors his blood sugar and uses Glipizide when it is higher than 100.  However, ever since starting the honey, Richard's had numerous episodes of low blood sugar and now only takes the Glipizide about every two days.  But both docs have stated that it's all natural so it won't interfere with any protocol, and if it is working, to stick with it.  Plus, it just gives Richard energy and makes him feel better.  They're both all for that!

I have begun recommending Manuka Honey to anybody who will listen.  It's the only change in our life that we've made, and we are living proof of the results.  Maybe there will be more improvement; maybe there won't be any further results.  But it's sure been worth what we've gotten so far.  And as one poster about the honey said, God promises us a land of milk and honey in the Bible, so there must be something special about honey, right?

Now for the particulars: you have to get it at a health food store, or Whole Foods, or order it online.  You can order it through Amazon.  (Luckily we have a great health food store not far from here that carries it.)  It isn't cheap, either.  But then, neither are the medicines and doctor's visits, and as long as I'm going to be paying one way or the other, I'd rather be paying for a natural product.

I'd have been the last one to go this route - I'm a product of my upbringing and times, and turned to medical science for the answers.  That may have been the answer to the initial stage of diagnosis and surgery, but I think medical science falls a bit flat on the follow-up daily issues.  Thank God for a forum like this to be able to share with others things that help in that regard!

So look into it, discuss it with your doctor, and decide for yourself if it's worth a try.  Good luck!

Cindi