- CindiS
- New member
- Registered: Wed, 21 Jul 2010
- Posts: 3
New supplemental drink might help...
In August of 2007, my husband Richard began feeling ill. It took until December 20 and five specialists to finally diagnose his condition (another long story in itself). He is now two and a half years post-Whipple surgery for stage 2a (just barely) distal cholangiocarcinoma with no lymph node involvement. His surgery by Dr. Jason Fleming at M D Anderson Cancer Center in Houston went very well, but he did develop a severely inflamed pancreas afterwards which necessitated a longer hospital stay and a second drain being inserted post-surgery. The surgery was performed January 15, 2008, and due to the complication and the toll it took on him, his reduced-level chemo and radiation therapies did not begin until the end of May. He received chemo both by IV and orally (the oral was Xeloda) and then continued Xeloda through the radiation treatments. He tolerated both very well, with only a mild case of becoming susceptible to cold temps and tingling in the tips of his fingers at the very end of the chemo. He did well throughout the radiation treatments as well, though by the end he was beginning to be tired. His last five treatments had to be delayed by the onset of Hurricane Ike when it hit the area in September 2008 and shut the hospital's non-essential services down for a few days. Therefore his last few treatments hit him harder than they normally would have, but the effect was mostly to make him extremely tired for a couple of months. He began recovering soon after that with a steady progress and gradual weight gain. By August 2009 he had gained 10 lbs. back of the 85 he had lost since the onset of the disease two years earlier. He had been overweight, and didn't want to gain all of it back, but he finally looked healthy again. Then he developed a pseudo-cyst on what is left of his pancreas, which caused some bleeding and pressing on his stomach. He had to have two units of blood transfused over Labor Day weekend and lost his appetite for about a month, making him lose the weight he had gained. The pseudo-cyst was surrounded by swollen blood vessels and could not be drained. We had to wait and let his body take care of it by itself. It took a few months, but it did; however, he has had trouble putting on any weight since then. He has struggled just to gain even one pound. Twice since then, we have also had to deal with a pocket of infected fluids collecting at the site of the scar on his pancreas left by the pseudo-cyst. Each of these episodes has also destroyed his appetite, though it has returned.
I relate this chronology of events in order for you survivors and co-survivors to have an understanding of where we are. While we don't feel we have to deal with the cancer again (statistically, as I'm sure you are all aware of, if it doesn't come back in two years, it probably won't again), the aftereffects of the Whipple surgery itself are another matter. Richard is not one of those people that has problems with dairy post-surgery, but he has not been able to tolerate Ensure or Boost supplemental drinks. He has not been able to handle much fat at all in his diet, so it's been a struggle to find nutrition-rich, low-fat foods that he likes and can eat. He does take replacement enzymes. He is back at work, and unable to eat several meals during the day as most sites recommend. So you can imagine that he has some symptoms of malabsorbtion, bordering on malnutrition, even with taking vitamin supplements. These episodes of infection affecting his appetite have only aggravated the issue. Luckily, the surgeon told us last week of a new supplemental drink called Enlive! that has just come out. It is fortified like Ensure or Boost, but is based in fruit juice instead of milk, and is more easily tolerated. Think extra-fortified Gatorade in apple and berry flavors. It isn't available here at any stores, but the company that makes it (Abbot Laboratories) ships. We just got our shipment yesterday, and my husband has found that he actually LIKES it!! That's good, considering the surgeon told him he has to look at it like medicine and down two a day for the foreseeable future!
I know that two days isn't much to base anything on, but believe me when I say that it's more encouraging than anything else we've tried. I just wanted to let others who are struggling like we are know about the product so that it might help.
- marions
- Moderator
- Registered: Fri, 12 May 2006
- Posts: 3287
Re: New supplemental drink might help...
Welcome Cindi and thank you for sharing this important information with us. And, thank you also for posting it in the designated area. The fact that your husband even likes the taste of Enlive sounds encouraging. Do you believe he will stick to his two cans a day? Other then him not tolerating fatty food, is he not eating anything because he does not like the taste of food or, is he to nauseous to feel hungry? The reason for my mentioning this is because; I believe that at one point calories have to be increased in any way possible in order to encourage some weight gain. Several of our members have also consulted with nutritionists with some excellent results.
Although, Jim had experienced a few setbacks along the way he has passed his two year mark. I would like to congratulate you.
I am happy that you have found us and have decided to become a member. Please, continue to share with us.
Best wishes,
Marion
- hollandg
- Senior Member
- Registered: Thu, 15 Oct 2009
- Posts: 85
Re: 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
- Katja
- Senior Member
- Registered: Tue, 23 Feb 2010
- Posts: 93
Re: New supplemental drink might help...
Cindi,
Thanks for the encouraging reports re: recurrence, but sorry that Richard has had so many problems. Thank you for suggesting the drink.
Gerry - glad your recovery is going well - have you had any treatment since the surgery? Did the surgeon believe that they got all the tumour?
Kate
- CindiS
- New member
- Registered: Wed, 21 Jul 2010
- Posts: 3
Re: New supplemental drink might help...
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
- CindiS
- New member
- Registered: Wed, 21 Jul 2010
- Posts: 3
Re: New supplemental drink might help...
Update: Richard continues to improve. He drinks the drink twice daily, as prescribed by the surgeon. That's progress! He has even begun to gain weight, according to our scale. How accurate that is compared to the hospital's - well, it's new, so we don't know and won't until his next scheduled visit in October. But suffice to say that between the antibiotics and the drink, he is getting better. He is stronger, too - his stamina is slowly coming back. He was coming home from work and basically collapsing into his recliner for the rest of the evening, and going to bed before 8:00. Now he is still energetic, even in our almost 100 degree heat, and isn't heading to bed until the news is on around 10:00 p.m. He even tackled a few household/yard projects this past weekend!
I can't totally credit this drink, because of course getting the infection taken care of is pretty important, but I do believe it is making him stronger and hastening his recovery from the effects of the infection. I highly recommend that anyone having trouble with Ensure, Boost, or Breeze try it!
Cindi
- rowena32
- Senior Member
- Registered: Wed, 06 Jan 2010
- Posts: 75
Re: New supplemental drink might help...
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
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