Let me encourage you with the fact that just because something can't be done today, doesn't mean it can't be done tomorrow.  The procedure my husband had using alloderm spacer with high levels of radiation to the liver and bile ducts was not being done at this level or with tumors this large until after he had been diagnosed and treated for several months with chemo.  They were not sure they could help him because of the size (15/9cm x 14.cm and location of the tumor (around the portal veins and into both lobes.  But, they did here at MDAnderson in Houston. The tumor is dead.  We are dealing with bile duct issues trying to get the drains to function properly and currently have an infection.  But, that can all be controlled.  So, just around the corner may be the answer.  Just because they ran out of options at one hospital also doesn't mean they ran out of all options at other large research hospitals.

2

(20 replies, posted in General Discussion)

My husband Mark finished radiation in December and we had glowing results of the tumors very timely death!  But, over the past few days Mark has gotten more and more jaundiced.  Today we were told that they wan to put drains in because they can't get the bilirubin under control without it.  So, beig decisions.  The mass is neucrotic and therefore is dead but not getting much smaller in the process.  So, the bile ducts have begun closing up again and this time the meds are not working to stop it.  So, they are wanting to do interventional radiology and see if they can get through the blockages to put in a percutaneous drain.  It sounds like there is a tremendous life change with these drains in place.  He has always been an active man and worked a lot outside and in the shop, also with the cows and such.  What are the limits the doctors give or that some of you have encountered in just daily living activities.

Excited to see that you were going to the conference.  I saw where Dr. Aloia was leading this part of the conference.  He is the one that surgically placed the spacer in my husband Mark.  Then I saw today where the January 2014 edition of OncoLog talked extensively about the treatments for hepatobiliary cancer treatments.  One of the things that were mentioned was the IMRT after spacer implantation.  I know it must have given you a great deal of good info being there in person.

4

(21 replies, posted in Good News / What's Working)

Well, we are Feb 20th now and Dr. Cranes words were:  The tumor is dead.  There is no longer a life threatening issue.  We are seeing Dr. Herlong at MDA now as well to try and get the bile duct to open better.  He is receiving meds to help with that.  But, the tumor was large and the shape of it still appears on CT but it has become more of an appearance of a fluid filled sack with no cancer properties.  Their explanation is that because the fluid is still there and other ascites from the radiation, his bile ducts are still somewhat restricted.  So far, they have not had to put a drain in.  His fatigue level is diminishing and ascites is as well.  There is also no indication of liver disease.  Praise God Almighty!  Even doctor Crane came into our last appointment beaming with a bile smile.  They know it is God's hand with the treatments that made the difference.  Mark is still jaundiced due to the bile duct not being open completely.  But all in all he is doing really well and going to physical therapy twice a week to build back up.  Hope to share more good news.  The only negative is the 1500 sodium restriction to his diet that is being used to help get the ascites off.  LOL, I guess if that is the worst thing we are dealing with now, we can jump and dance.
Praying for all of you as well.

5

(21 replies, posted in Good News / What's Working)

My husband Mark received a good report this week.  Our journey at MDA began May 15, 2013.  Diagnosis:  Undiffertiated Intrahepatic Cholangiocarcinoma approx. 15 cm at largest measure.  Resection was not an option and location made treatment very very difficult around blood vessels.  Chemo of Gem/Cis worked for 4 treatments 1/every two weeks.  Then after next 4 treatments scans were done again and it was back to the original size if not a little larger.  All cancer was confined to the liver.  Dr. Crane decided to have an Alloderm spacer surgically placed between the liver and soft tissue organs.  Two weeks after the surgery he began IMRT at 100Gy center and 58Gy outer edges.  Two month checkup on January 28th showed some ascites but no cancer.  In Dr. Cranes words, "the tumor is dead, there is no longer a life threatening issue."  The doctors had hoped for these results but were smiling when they walked in the door to see us.  They weren't sure this would work because of the size of the mass.  Praise God for His miracle working power through the hands of the doctor and many prayers.  No more chemo or radiation but will do further scans in 3 months to make sure everything is still showing clear.  Mark is still somewhat fatigued but that is getting better and fluid ascites in abdomen is gradually deminishing.  He is getting back to his old self a little more everyday.

Marion - They said they changed from proton to IMRT because even with the spacer, the mass was so large and with blood vessels that were affected they felt it would be safer and more effective.  He had scans each day before they did it to make sure nothing had moved.  A couple times they did have to adjust their numbers to compensate for a shift within that area of his abdomen.  They said they would not be able to do scans each day with the proton therapy.  Then we found out that our insurance wouldn't allow the proton but would the IMRT.  So, that could have also had something to do with the change.  But, the doctor said that working up all the info they have to in order to make those decisions it was very clear that the IMRT would be the better option.
He finished with it on Dec 16th and we go next Friday for new CT to see how effective it has been.  Praying for a miracle.

Mark is on lasix and spironolactone for the ascites.  It seems to be working very very slowly.  At least he can eat now and is hydrating.  He will have blood tests this week to check all his numbers regarding the diuretics and any chemical issues.  I am surprised that the swelling has not gone down more but the doctor said they don't want to diurese too quickly.   They changed a pain med today that he had been taking for pain in the left thigh also today and just called for us to come to the hospital to have new labs drawn.  So, we will have a better picture of the current status of things here in a couple hours.

We go to MDA again tomorrow.  Mark is scheduled for another Catscan to compare to prior ones taken to evaluate what is causing the fluid build up in his abdomen.  They believe it is probably just the radiation but want to check and make sure it isn't some type of clot affecting the portal vein.  We are certainly hoping that it is just the body reacting to the surgery for the spacer and the immediate radiation behind it 10 days later.

Fluid pills don't seem to be doing much to decrease the distention but he is feeling better for the most part.

Danna0325,
My husband is seeing Dr Desari as his primary oncologist and Dr. Crane for radiation.  He completed the IMRT on Dec 16th and is still very fatigued and abdomen extremely distended.  They gave fluid pills today and want to give it a week before they see him again. If that didn't change anything they will do another scan to make sure there is no other problem going on besides that beast of a tumor irritated and dieing.

Spacer surgery went well and they changed plan from proton to IMRT instead.  He is in his 4th week of treatment and the fatigue has really got him right now.  Today he began to run 101.5 temp and call into doctor now.  But, other than fatigue he has been doing well.  Everything tastes bad and he is forcing himself to eat.  But, those seem to be issues that everyone faces.  He finishes on Dec 16th and then we wait approx. 2 months before new scans are done to see how successful imrt was.  The waiting is what makes it so hard sometimes.  Just got to stay positive.

Mark (my husband) dx in April intrahepatic cholangiocarcinoma 15.9cmx 13.4 cm.  It is located in the ducts and invaded both lobes of the liver and caudate area.  He was sent to MD Anderson where chemo was decided as first treatment GEM/CIS.  He did 8 treatments with some platelet issues but CT at end of 8 treatments showed mass as large as when begun.  Even surprised doctor who really expected more shrinkage as the first CT after 4 treatments showed about 30% reduction.  Radiation Oncologist chose to have surgeon place alloderm spacer between liver and stomach/soft bowel tissue to protect.  Then one week later instead of proton therapy (as we had been originally told) IMRT was chosen as the better option.  He has been through 15 days of IMRT at 100Gy center of mass and 58.5Gy outer edges.  He has 11 more days to go.  Because his platelets had dropped on three occassions to 75 or less, the doctors all concurred that it was best to hold off chemo while doing the IMRT.  They say it will be 2-3 months before they will be able to see the complete affect of the radiation on the mass.

We believe in miraculous healing but are also not in denial that God doesn't always answer the way we would like.  I am just hoping they are being forthright with us and there truly is a chance that this could kill the cancerous mass.  Anyone dealt with this particular situation out there?

12

(22 replies, posted in General Discussion)

My husbands oncologist at MD Anderson told us that it is not uncommon for this particular type of cancer to respond poorly to chemo.  Then there are others like my husband that were rocking along great with no side effects at all and then wham!  All of a sudden he it quit working.  Shrinkage that had taken place was no longer the case.  It was as big if not a little larger than in the beginning.  But, when I asked about other chemo's he didn't feel there were any that would do as well as what the Gem/Cis had done since he was able to take it for a while with no issues.  So, we have moved to proton therapy given after spacer has been put into place surgically to protect other organs.  The good thing about being in these research hospitals is that the trials are available and something that wasn't available when we began this journey is now, 5 months later, his best chance for success.

So good to hear directly from someone that has had this done.  They have told us it will be laproscopically and hand assisted.  So, i am sure he will be quite sore.  They are telling him 2-4 days in the hospital...just depends on how well he is doing.  My concern is more about them beginning the proton therapy so soon after the surgery.  They are saying 7 days after the surgery.  But, they are also telling me that the proton therapy shouldn't give him many side affects.

Nikki, My husband is a patient at MD Anderson currently with a very large mass that is unresectable.  We kept hoping that it would get small enough to do surgery.  But the chemo quit working and the amount of radiation they would have to use would have damaged too much tissue for surgery...besides there it is in both lobes and the caudate area which also makes it difficult to treat.  With that said, I know that there is a clinical trial that has just gotten approval in later stages.  MD Anderson is involved with MASS General in this and DanaFarber as well as a couple others.  From what I can understand.  MD Anderson and Mass General are leaders in the treatment of this type of cancer especially in difficult to treat cases.  They have been wonderful to us and currently have his scheduled for a surgical procedure to place an alloderm spacer between the liver and stomach/small bowel to protect them while they hit him with massive doses of proton therapy.  They are approaching this with curative intent and so far have found this approach to be as effective as surgery. This is the information they gave us.  Personally, I like the team approach where they take the case before a whole team of specialized doctors who review and all put in their opinions on the best plan of attack in a case.  What you end up with is a concensus of all of their knowledge reaching the best process for the particular patient.  We love MD Anderson.
But, we also live about 75 miles away only.  So, that makes a lot of difference in these decisions too.

15

(3 replies, posted in General Discussion)

I don't know about your particular hospital.  But, our doctor is listed as the recruiter for some trials using proton therapy and in our case Alloderm spacer inserted to protect the stomach from proton beams since the tumor is very large.  He told us the other day that they were looking to other groups in other areas to get involved in their study outside this area so others can have the same training to help people in their areas.  So, there is definately some validity to MD Anderson sharing their knowlege in other places.

My husband has been on chemo since June and was doing better than anyone expected.  Then suddenly the chemo quit working and the mass was the same size or a little larger than when we began.  It is a 14x13 cm mass.  Doctor discontinued chemo until we could see the radiologist.  They have scheduled him for an Alloderm spacer to be surgically placed between the stomach/small bowel and the liver in order to protect that tissue while giving the equivalent of 10 weeks of radiation in 3 weeks through proton therapy directly into the liver.  They say they are doing this with curative intent.  Now I do know that he is 1 cm over the protocal for this treatment.  But, they are doing it anyway.  They said at this point, that is his best option.  Has anyone else out there had this done. We were told this was part of an ongoing trial begun several years ago.  but, the spacer being implanted has only been done at MD Anderson we are told 5 times with tumors this large.  They said it has proven very successful.

We are close to MD Anderson Houston so we made that choice.  But, when asking our primary about CTCA he said we were right where we needed to be.  His reasoning was this type of cancer is best served in a large research hospital since it is rare and not everyone has the expertise to treat it.  The diagnosis we are dealing with is unresectible intrahepatic cholangiocarcinoma in both lobes and caudate area of the liver.

When we talked with our internist today that consults with our oncologist he told us that B12 helps bring the platelets up.  So, I have been searching the net today to see if that is a common response.  I have seen many nutrition sites that address this and it seems to have some validity.  Now how fast that should work, I don't know and we are just now dealing with this.  But, in our situation my husband has had no other side affects at all and so far after two months of chemo (given once every other week) he is feeling very good.  All that might make a difference too.

19

(2 replies, posted in Introductions!)

My husband was diagnosed with intrahepatic cholangiocarcinoma 4th stage in the spring and has received 4 rounds of chemo to date.  He is being treated with gem/cid total of 6 hrs counting steroids and other prep meds etc. every other week.  Staging this week showed about 30% shrinkage in mass.  But, platelets had dropped in half since chemo two weeks before.  What is the fastest way nutritionally to bring that count back up in order to take chemo again next week.  They delayed it until the numbers come up.