December 13, 2018 at 5:14 pm #97891JenbtskierParticipant
Update on my husband trying to return to eating. John has started some yogurt yesterday (2/3 of a serving total during the day) along with the continued tube feed. He felt better yesterday than in all the days since the start of the new chemo treatment I mentioned, and it continued through the night with a decent night’s sleep and a good morning. He had the rest of the yogurt and a tiny bit of chicken soup and experienced the return of the sharp pain he has experienced since the Whipple surgery, along with the onset of fever AGAIN. Every time he has tried food, he has spiked a fever followed by vomiting. We are stopping food for the day/evening and will see how the night goes. I pray for no vomiting. If anyone out there has experience or advice on how to return to eating after Whipple/TPN/Feeding tube, I sure would like to hear it! He continues to lose weight, and we need to turn this around. We discussed the situation with a nutritionist at his last chemo appointment and there seems to be no specific way to accomplish this, though she gave good (and consistent with past advice) input with regards to food to try, avoid, etcetera. No high-fat foods, avoiding beef, nuts and high fiber foods for now. Of course no alcohol. No problems following these guidelines.December 10, 2018 at 6:02 am #firstname.lastname@example.orgParticipant
So sorry to hear about your troubles and your husband’s ordeal with this wretched disease. My personal experience involves my father’s diagnosis, very recent diagnosis, of cholangiocarcinoma. Dad was diagnosed in July. Of course I realize that having him with us for the past 6 months has been a blessing. My dad lives abroad and has had some very good experience with doctors, surgeons, gastroenterologist, oncologist, internist. My dad is 71 years old, this was the year he was going to retire, start gardening, cooking, take a trip with his grandson, my 15 year old son and his best buddy. None of that happened aside from forced retirement due to the diagnosis. My dad was not a candidate for surgery due to the proximity of the tumor to the hepatic vein. We saw some of the best oncologists, biliary cancers are their specialty, they have written books on the matter, travel the world and educate the rest of the medical community. So we were advised that the surgery had little chance of success and great possibility of creating immediate and major problems for my dad, bleeding, pain, reoccurring infections etc. He initially presented with jaundice, that was our first and only indication that something was wrong. He was hospitalized, I’m backtracking now, this is before the meetings with the surgeons. He did have the metal stents set in place to remove the accumulated bile from his liver. Thank God that went well with the first attempt. Stayed in hospital for 2 weeks and then it was time to make decisions for treatment. To make a long story short, all surgeons were against the surgery, we decided on chemo for a possible extension of life prognosis and a better quality of life, if chemo indeed worked. Dad proceeded to loose weight rapidly. As soon as chemo started he lost his appetite as well. Dad has lost about 40 pounds as is extremely weak. Over the past 6 months there has been a steady, slow deterioration of body and mind (possible hepatic encephalopathy along with depression, manifesting in hallucinations). Even though the chemo was successful in attacking areas where cancer was present, it successfully attacked the lymph node spread, the tumor shrunk, the pain receded. Dad has no pain right now, but has what’s known as ascetic fluid retention. We had to have his tummy drained every couple of weeks along with continuous blood transfusions due to low platelet count. Dad has stopped chemotherapy because oncologist decided it was enough, his overall picture is of a devastated, exhausted, emaciated human being. He has no strength. He takes in very little nutrition. Please look up protein drinks and shakes to be given 3 times a day. For my dad that’s about 900 calories total, 300 calories per shake. We use a blender to make soups and creams because it helps with obviously feeding him more. We usually blend vegetables, carrots, potatos, zucchini, an onion, a tomato a bit of olive oil. Baby food, like biscuit creams blended with a banana or a blend of his favorite fruits. Yogurt, milk, jello, peanut butter. we follow the advice of a nutritionist. Please feel free to ask me any questions about nutrition. It has been an ongoing struggle. Now that he has stopped chemotherapy, doctor has introduced immunotherapy with the drug Keytruda. He does not have any accumulation of ascetic fluid for about a month now, no need for drainage, yes that is one positive. After the treatment he’s better for about 3 days and then reverts to being exhausted, continuous lack of a healthy appetite. Right now and within the space of one month, since I saw him last, he’s not able to stand on his own, hold a cup or an object. He has started developing fevers, sometimes without a virus or infection. Right now he is in the hospital again, with what appears to be a lung infection. He had a very difficult time breathing, he was in pain. Now his breathing is better. I’m taking an emergency flight overseas tomorrow to see him. I wish you all the best in your fight with this disease. It’s difficult on the patient first of course and then on all of us who love them and take care of them because it seems unmanageable for some cases. We try to provide them the best we can and that is all we can do. Stay positive and whenever you see the slightest sign of improvement, a day that he ate even a cup of yogurt tell him how good that was for him. Psychology is so important. The fact that he’s there and wants to fight regardless is an immense plus, he’s strong, be strong with him, even tell him little things like your skin looks brighter, your eyes look clear. Make sure the doctors provide you with any pain medication needed to alleviate the discomfort. Laxatives, antidepressants, very important for a psychiatrist to join in the care team. Something to help him sleep and get some rest.
Right now I need answers but they’re hard to get. How can the doctors explain how each person’s immune system may react to a load of immune cells being pumped into your body so that you can fight your disease in your own. Will they be recognized as foreign by your own cells, will these cells then be able to recognize the rogue cancer cells and attack them? For now long? Doctors say we can only tell by the looks of the patient, is there any physical improvement? Well apparently in some cases, no. So I would like to and pray at this point that my dad gets a few weeks, please god, of quality time, no treatments, no hospitals, just pain killers if need be and is his family for the holidays. to
You can also purchase vitamins, supplements and there is always CBD oil, no THE content, therefore no high, if you’re open to trying, it relaxes the patient, will be able to enhance appetite, and in some cases doctors believe it has healing properties for liver related cancers.
Good luck and God bless.
BettiDecember 9, 2018 at 4:41 pm #97878bglassModerator
Welcome to our community and thank you for posting such a detailed message about your husband’s treatment and care. This is so helpful to others facing the same diagnosis, to know what to expect and how to cope. I also hope you have found the many patient and caregiver resources on the Foundation website.
Your husband has had a completely miserable six months, and you mentioned he is needing a win. For this cancer, John has had some good wins already, although it may not feel that way right now, especially with all the discomfort, pain and nutrition concerns he has been coping with. Being able to have surgery is one. The Whipple is a major, major surgery, however, and recovery can take its time and hit bumps on the road. John has also done well so far with chemo, is getting good care from experienced medical professionals, and has loving great support from his family. Cholangiocarcinoma is a tough cancer, but a lot of cards are stacked in John’s favor.
I am not a medical person, but my layperson’s impression reading John’s story is that, because he is young and otherwise healthy, his doctors are taking an aggressive approach to treating his cancer, which means an initially rough ride, but fingers crossed, a good result at the end of the day.
I hope John’s recovery continues and he starts to feel better. Please take care of yourself, and send any questions our way.
Regards, MaryDecember 8, 2018 at 10:33 am #97870bonParticipant
Wow, you’ve been through a lot – and in such a short time period.
I know this wretched condition can and will take a toll on John, you and the rest of your loved ones. It’s a journey I wouldn’t wish on anyone.
In my husband’s case, the surgery failed. This was devastating to us b/c we know the only way to “cure” CC is either a liver transplant (my husband was immediately ruled out as a candidate) or bile duct resection – that’s the surgery that failed. I was told the surgery would be very long and that if I didn’t see the surgeon within an hour, everything was going according to plan. 90 minutes after surgery started I left for home to take care of my animals and take a shower , was on the freeway – when my phone rang. I pulled over and it was the hospital calling to tell me to return immediately. I knew that was bad news – when I got there the surgeon was waiting for me with his arms crossed across his chest- and I could tell the news was not good. He said the cancer was too close to the Vena Cava and he couldn’t do a thing so he closed my husband back up – and told me we’d have “one very bad year.” This was July of 2017 – another doctor told us my husband wouldn’t see Christmas let alone the New Year.
We were bitterly disappointed, of course. Those were dark days indeed, my husband was very depressed, said he’d lived a good life and had no regrets. But, he also said he wanted to fight no matter what.
There was a long recovery from the (failed) surgery – the surgeon did remove his gall bladder, I’d say at least six months – he started chemo in September after he’d recovered enough. After that, somehow the cancer started to retreat! The scans started getting better and better – along with the liver numbers and CA 19-9 – husband quit chemo in January of 2017 – and his latest scans two weeks ago (PET/CT, MRI and CT) were marked “improved” with no lymph node involvement. The oncologist told us this past week that the cancer isn’t kicking up – but the stents continue to be a problem (they’re stable at the moment and slated to be switched out at the end of December).
What I did during those bleak days was to try to keep life as normal for us as possible. I told my husband’s family members to call and text as often as possible – this cheered up my husband tremendously – I also massaged his feet and hands every night to help him relax and relieve his anxiety. We also went out to dinner, visited friends (I drove us everywhere) and just got out of the house, even walking our dogs helped. This helped alleviate the dark mood that had descended in our home. I didn’t know what else to do except put one foot in front of the other. I was planning for widowhood, believe me – we discussed what music my husband wanted at his funeral and began the transition for me to take over everything that he did as far as mortgage and bills. It had to be done.
The latest scans from two weeks ago have given us hope for the future – the original almost 12 cm mass is now of “indeterminate size” the oncologist said there still might be “microscopic cancers in there” – we know every day is blessing and things could change quickly (as in your case and in ours – we’ve had several after-midnight trips to the ER).
I wish you the best and for John’s speedy recovery. You must keep hope alive and put on a brave face every minute of every day (hard to do at time, I know, I had a massive, unexpected breakdown – a real crying fit – in front of a houseful of company- I couldn’t help it and everyone understood – had another breakdown in a restaurant, couldn’t be helped! I expect there will be more).
Keep life as normal as possible, try the massage and keep connected with family and friends. This is what helped us.
All the Best to You!
BonDecember 7, 2018 at 6:54 pm #97868JenbtskierParticipant
What a relief to find this site! I think that knowledge is power so I’ll share our story here in the hopes it helps others along with helping us. I am writing with my husband’s permission. We need help/hope post-Whipple that John will get past the complications he has experienced. If you have experience with this, please read on.
On May 24, 2018, my then 54 year old husband and I were out celebrating the opening of a favorite summer spot when he suddenly said he didn’t feel well and had to leave. This, the same man who has been out sick from work once in 27 years we’ve been married. The stomach ache passed, but he continued to feel “off” for the next three weeks ultimately going to our PCP on a Friday because of dark urine. Our PCP suspected a UTI and put him on antibiotics and sent off a culture. On Monday, cultures were negative and she suggested it may be gallstones, and set him up with a surgical consult, but said is was OK for him to take our daughter to her college orientation. He left with instructions to visit an ER if he had sudden pain. Two days later when they arrived home, he was incredibly jaundiced and our PCP advised to go to the surgical consult at Beth Israel Deaconess in Plymouth, MA that was scheduled for the next morning. I got a call from him saying he needed to go their facility in Boston for some procedures they couldn’t do in Plymouth.
At Beth Israel Deaconess Medical Center in Boston, MA, on June 21st, my husband had an ERCP procedure. I knew when I saw that gastroenterologist’s face that he was concerned. They placed a plastic stent in his bile duct, and did a biopsy with results expected in a few days. Unfortunately husband was of the few that developed not one, but two, side effects of the ERCP-acute off the charts pancreatitis and then internal bleeding that required 4 units of blood in one day. Now on day 4 in the hospital, with no diagnosis and things getting worse, we were anxious. Our college age kids were home (70 miles away) and I was traveling back and forth to the hospital, staying for 12plus hours each day. The side effects led to another ERCP and a metal stent placement, and finally on the 5th day he started to feel better. Then came the doctor with a preliminary diagnosis of pancreatic cancer on the 6th day. This week from hell turned to total devastation. I went home and told our kids. On day 6.5 we left the hospital with an appointment for surgical and medical oncological consultation in the near future.
Upon meeting with a surgical team, it was determined that his cancer was cholangiocarcinoma, not pancreatic cancer, with a tumor involving the portal vein and the hepatic artery all near the pancreatic head. Pancreatitis was still in full force, and it was hard to see everything on the CT Scan. His bilirubin was finally returning to normal, and he was starting to feel better with Protonix and other medications. We were told John was a candidate for surgery with the possibility of “surgical cure” and that the treatment plan would consist of gem/cis for 3-4 rounds while the pancreatitis resolved, with surgery to be scheduled and following up with more chemo. He handled the gem/cis fairly well, only 2 trips to the ER for fevers that were cause non-specific, and we went about the summer as best we could.
On October 9, 2018, John had Whipple surgery that lasted 11 hours, with the whole process beginning at 4:00am for us to get to the hospital for 6:30am pre-surgery. He was finally in a room at midnight. Diagnosis: Distal extrahepatic bile duct cancer involving the bile duct, pancreas, superior mesenteric artery, hepatic artery and portal vein. Portal vein was repaired without needing a vein from elsewhere which was good news, clean margins around the area of the removed tumor, also good news. Regional lymph node metastasis, not good news. Now we knew we weren’t looking at a surgical cure but need post surgery treatment to do more than just “make sure”. John was in the hospital after Whipple for 16 days. Again, complications. His relatively healthy pancreas made surgical repair difficult and he had a leak that caused him to not tolerate food and necessitated the addition of an I.R. Drain, a procedure that caused so much pain and then nausea it was heartbreaking. All the while since surgery he was having sudden onset severe abdominal pain with no apparent cause. Still no tolerance for food after the IR Drain, so a PICC line was installed for TPN (IV nutrients) that were set up to be delivered directly to his bloodstream, completely bypassing all things gastrointestinal. My husband came home now suffering from malnutrition on top of it all. With wonderful help from the hospital nurses and the VNA I learned how to care for my husband: three drains, flushing the PICC line and setting up TPN and med management. We got instructions on how to begin with clear liquids (again) and move to opaque liquids and bits of solid food. Then started the gastric dumping and fevers. This led us to the hospital twice, and when the PICC line occluded on November 18th, he was hospitalized on the 19th for a CT Scan and endoscopy to try and figure out why he wasn’t progressing. There is still no known cause for the severe abdominal pain that exists to this day. An NG tube was put in and John came home on the evening of Thanksgiving to our houseful of kids and extended family (truly the bright spot to the week!). He has been on tube-feed ever since. Since both his surgeon an his medical oncologist feel the gem/cis did not do the trick prior to surgery (lymph node involvement), he is on a new regimen of Leucovorin/Oxaliplatin/Fluorouracil that started yesterday. It will be every 14 days, with the Fluorouracil being delivered by pump for 44 hours. He gets the pump stopped tomorrow morning. If he doesn’t experience nausea, we will start trying some simple foods next week to try to slowly move away from tube-feed (with the guidance of a nutritionist). With the NG tube, we are so concerned about this because of the previous dumping and fevers.
My handy, healthy, wonderful husband and father to our great kids has lost 40lbs since the start of all this, and I am desperate to find ways for him to regain strength and stamina, and start eating again. His mood is grim and he needs a win so we can fight this thing.
Well that was longer than I expected….thanks.
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