Hello-Husband with CC struggling to recover from Whipple

Hi Jennifer,

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.

Betti

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!

Bon