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November 5, 2013 at 8:16 pm in reply to: Is it worth it to relocate for treatment at MD Anderson?! #66274
I haven’t logged on to this site in a very long time because we have just been getting on with our lives after very successful treatment of cholangiocarcinoma for my husband almost 6 years ago.
Our surgeon at M. D. Anderson was Dr. Jason Fleming, and Dr. Javle was his oncologist.
We live only 40 miles from the hospital, so for us it was a no-brainer to go there. However, I cannot praise the whole hospital staff enough for the whole experience. We never once felt as if we were an anonymous patient, and that we were an integral part of the whole team. We were listened to, and our thoughts and desires were always included in the process. I’m not saying we weren’t occasionally overruled, but it was NEVER a case of being talked-down to. Now that being said, I must clarify that my dad was a hospital administrator, my mother was a secretary to the dean of a nursing school at a university, my sister is an diagnostic RN, and we had a brother who was paralyzed from the neck down in an accident in the Viet Nam war and then lived at home with us for 28 years before passing from cancer himself. I have no hesitation letting medical people know this about me, and I do think it does change how we are treated. I don’t pretend to know as much as the doctors or nurses, but I do let them know I’m not totally ignorant about medical stuff and that I do my research and ask intelligent questions.
To anyone researching any hospital for themselves or their loved ones, I would say this: research, research, research. You may have to do this very fast, so thank heaven for the internet! If you are facing a Whipple, you want the place and/or person who has performed the most, within the constraints of your budget, ability to travel to that place, and support system in place for you and your family. There will be differences in opinion and methods of treatment among these doctors, because they are different people just as we all are. You may have to ask questions – so ask!! It won’t offend them. And if it does, then decide if that matters to you.
While the medical treatment is the primary concern, don’t overlook the support system in place for the caregiver and family. Some places are definitely better at this than others. And a caregiver who is overwhelmed and burning out from the demands now on them can’t take care of the patient well.
Since going through our journey, Richard & I have become certified counselors with CanCare. It is a non-denominational, faith-based organization which matches a cancer patient (any kind of cancer) with someone else who has had/is still dealing with that exact kind of cancer. They may still be battling the disease, but usually are much further along the road on the journey than the patient. What they do that is so special, though, is that they will match the caregiver with another caregiver, too. It is so wonderful to have someone to talk to who has been in your shoes and is still standing! Not to mention just having someone to talk to. Your family and friends love you and want to help – and many do, in countless ways – but they can’t understand completely the path you are walking. Being able to talk to someone who has been there, and come through, is a lifesaver. CanCare is free and online at http://www.cancare.org if anyone is interested.
I just can’t get back here as frequently as I would like, so if there are any questions I can answer for anyone, please email me at cinschmerb at gmail.com. (Written this way instead of traditional way in order to avoid scammers.)
Wow, didn’t realize it had been so long since I logged in to the site! I guess it’s just because we have been getting on with our lives.
Richard is almost 6 years post-cancer surgery now. Thank you, God!!
He recently had his last annual CT scan. From now on, we only have to go back every two years for a check-up. There were times I never thought we’d get here.
He is doing very well overall, but is now a diabetic. We always knew this was in our future, and the future is here. It’s been about a year now that he has had to take Metformin for the diabetes, and last spring the endocrinologist added an additional dose of Glipizide. However, the Glipizide was a bit too strong and caused some low blood sugar episodes so he quit taking the full dose. He takes half of it.
When he had the CT scan review appointment with the surgeon last week, his A1C was up to 8.2. Anything under 10 is good, but they like to see it closer to 6 or 7. While greater dosages of the meds will help with that, it is also a diet issue as well, so we’re tightening up that. But the biggest issue is that the CT scan showed the remaining part of his pancreas is beginning to atrophy. This, too, is what we were told years ago might happen. There is nothing that can be done about that.
So, insulin is probably in our near future. The surgeon, who has two diabetic kids himself, is very up-to-date on all the latest in insulin therapy. He is very positive about how well Richard will handle insulin, and with the advances in insulin itself and the pump technology, reassured Richard he will do well with it. Richard, of course, wants to do everything possible to delay that day. He sees the endocrinologist in two weeks, so we’ll see what he has to say. In any case, it’s minor compared to all we’ve been through.
In reading back over the previous posts, I would now recommend Enlive! only as a short-term supplement to anyone. It’s very high in sugar, and that’s just not something a patient with pancreatic issues needs to be dealing with. But if you can’t tolerate Ensure or other supplemental drinks, by all means at least try it – for a while.
Richard also continues his Manuka Honey regimen, though with the shrinkage in the pancreas, he is now reducing the amount he is using. It has so many good properties we don’t want to eliminate it, and he has not needed any antibiotics of any kind for any infections since he began taking it, but we also want to decrease the stress on the pancreas as much as possible. It also helps fight MRSA, not that we’ve had any of that, but do believe that keeping his immune system at a higher level is a good thing.
We have also found that intestinal distress is greatly reduced if, instead of taking an iron tablet each day, he takes a liquid iron product called Pur_Absorb. It is a packet of iron-rich water which he drinks like you would any other liquid medicine, or can be put into another drink if needed. It’s actually formulated for women, and one package is half the dosage of iron the doctor wants him to take, so he takes two each day – one in the morning and one at night. It seems to be working for him.
All in all, we’re both doing well, and thank God every day that we were so blessed to find the people at M. D. Anderson. By all rights, I should be going to visit Richard’s grave, but instead he is alive and kicking. He is one of the ones helping to inch up the percentage of patients who can be predicted to have a positive outcome and beat this disease.
God bless you all.
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.
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.
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!
I haven’t checked on the sugar levels in the drink. In our case, the surgeon told us that any blood sugar levels under 180 were acceptable, though we try to keep it much lower. I’ve read that sugar feeds cancer, too, but until the doctor tells us to cut it out, I’ll leave it in the realm of urban myth. Realistically, I don’t beleive that any one nutrient ‘feeds’ cancer. Cancer is uncontrolled reproduction of defective cells, and that’s in the genes. If sugar ‘feeds’ cancer, then wouldn’t eliminating it ‘cure’ all cancer by starving it? Clearly that isn’t happening.
I haven’t been back here to this forum in quite a while because we were actually getting on with our life. However, it looks like Richard is getting another infection at the surgery site. His routine CT scan is scheduled for three weeks from now, so we are trying to get it moved up before the infection (if that’s what it is) gets full-blown. He’s had a terrible weekend – chills, fever, sweats, fatigue, and today, the beginnings of appetite loss. These are all the symptoms of this infection returning in the empty space left after his surgery. I will post updates as they happen. He is still drinking the drink, and overall, has seen slow improvements. His weight has held steady at a 4-5 pound gain, so we hope with long-term use it will slowly climb. Perhaps it’s wishful thinking, but it seems the infections got a stronger hold on him more quickly than this time, and the only difference is this drink. Even if that’s all the edge it gives him, it’s worth it.
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!
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!