Jason, I never saw that you lost lost your precious wife until today. I am so sorry. I know how hard you worked on getting her the best care and you were an advocate not just for Andrea, but for all of us. I lost my dear husband (age 60) on  Jan 30th and just couldn't get myself to write all the details of those last horrible weeks. I thank you for all the research you did and continue to do. You have my deepest sympathy.

I don't remember the dosage, but he did take it every 4 hrs. At night he didn't seem to need it. ...the nerves must relax during sleep. Neuropathy was his biggest complaint. I can't say that it ever got better for him except at the end when he was on mega doses of painkillers.
It took a few days for our insurance to approve the high dosage of Lyrica so try to get the process started asap.
Good luck!

P.s. I'm sorry I didn't reply sooner. This is the first time I saw your question to me.

Thank you :-)

Thanks,  Marion. My husband passed away in January and I have not been able to write about here yet. My spirit is broken :-(

Neurontin (Gabapentin) didn't work for my husband. However Lyrica, which is a very similar drug, worked well.


(10 replies, posted in General Discussion)

Thank you all for your replies and support.  I appreciate each and every one of you.  This site has been so helpful since I found it only 17 short months ago.
Hospice was here today.  Ron and I talked it over and will sign a contract with them tomorrow morning.  I am looking forward to having the support they provide.  Ron remains comfortable.  He had been eating every day but then it comes right back up.  Now he says he feels full and will not eat anything.  He started taking lactulose today and I am hoping it will help his confusion.  He seems to be staying awake more now but doesn't talk much.  He wants it all to be over now.  He's fought the battle the best he could and ready to be at peace..... with no more pain and suffering.  I can't blame him and I pray that peace comes soon for him.  Even though my heart aches all day and night, I know I must let him go when he's ready...... my friend of 43 years, my first love, my husband of 37 years. Oh God, I hate this awful disease!



(10 replies, posted in General Discussion)

My dear husband Ron is in advanced stage CC now.  Last week he had an appt. with an Interventional Radiologist to see if he was a candidate for Y90.  Instead we had to cancel the appt. and his Onc. told me over the phone that Ron probably only has 2 -3 weeks to live because he has developed Hepatic Encephalopathy (HE) from liver failure.  Ron was doing fairly well up until last week, but I could tell that he was failing a little with each new day.  The HE set in fast, with mild confusion, sleeping 20/24 hrs/day, loss of coordination and balance, and uncontrolled shaking.  I called the onc. immediately and he basically told me that there was nothing he could do for him anymore and that eventually he will sleep more and more until one day he won't wake up.

Strangely enough, the severe abdominal pain he has been experiencing for the last couple of months has subsided.  I don't know if this is because the fluid is being pushed out into the tissues instead of causing pressure on the liver, or because of the state of mind Ron is in right now.  He has been severely jaundiced for a couple of weeks now and started getting swollen feet and legs about 5 days ago. Yesterday he started vomiting up most everything he tried to eat.  He is also having hallucinations or dreams while he's somewhat awake. The last time he saw his onc. was a week ago.  Hospice is coming tomorrow for an evaluation.

My question is this..... is it possible to reverse the HE with shunts and medicine at this point?  (The onc. said it would only make things worse.) Or, is it worth it to try this?  He is so weak and seems so peaceful now that I want to just let him go.  He has suffered for so long with pain and sickness.  Will the symptoms from the HE get worse?  I don't know what to do next.  Please help me with suggestions.  I haven't written much on this site for long but I read everyone's posts.   I appreciate you all so much.


(0 replies, posted in General Discussion)

I am wondering if anyone who has the HAI pump has ever ALSO had Y90 treatment?  My husband, Ron, has had the HAI pump since Feb. of 2014 and his onc. is considering using the Y90 treatment in addition to FUDR in the HAI pump.  Onc is concerned that some of the beads could plug up the pump since the same artery is used to administer the Y90 beads.  Has anyone had experience with this or know of anyone who might have information for me?  Thanks so much!

I think that my husband's tumor was very fast growing and began less than a year before diagnosis. He had been having a lot of heartburn and low tolerance to acidic and spicy foods. However, it was found that he had H.Pylori infection, which I see mentioned quite often by cholangiocarcinoma patients.  Ron had annual physicals but they never checked any of the liver enzymes.  His last physical was 6 weeks before he ended up in the ER. His low hemoglobin was the only abnormality noticed at that physical. Ron was a smoker for over 40 years and had quit smoking 3 months prior to diagnosis.  Other than the above, I can't think of any recent changes in his lifestyle.

blodynbach..... the Irinotecan did not affect Ron's appetite at all, so hopefully this will be the same for yours. :-)

Of course everyone reacts differently but I can tell you how it affects my husband.  He gets Irinotecan every 2 weeks in his port. The side effects have been fairly tolerable.  He experiences a constant drippy nose and watery eyes.  It also knocks his hemoglobin and wbc count way down.  In order to raise his wbc count, 2 days after the Irinotecan I give him a shot of Neupogen for 3 consecutive days.  These shots have worse side effects than the chemo. ... horrible headaches, muscle pain, chills and sweats, wish last about 4 or 5 days.   He seems to get the worst of all possible side effects no matter what drugs they give him.   

In addition to the Irinotecan, he also gets FUDR and Mitomycin in his HA I pump. But the Irinotecan was added later so we think we know what causes each side effect..... for him anyway.

Good luck with treatments!


(12 replies, posted in General Discussion)

Moontje - I can tell you a little about the cannabis oil.  My husband, Ron, was able to try the cannabis oil, which was manufactured by the Rick Simpson formula, not long after he was diagnosed with cc.  At that time Ron was very ill, vomiting and not able to each much.  The oil did help with those symptoms, but it didn't do anything to shrink his tumors.  It was a strong strain of cannabinoid and he did not like the effects of it - being "high" all the time.  From what we have read about the oil, it has worked well for people that have seizures or brain tumors.  We know that it didn't shrink his tumors because he was off chemo for nearly 6 weeks and was using the oil this entire time.  He had a scan after the 6 weeks off chemo and the tumor increased in size by 3 cm.  However, like I said, it did help with nausea and increased his appetite.  Godspeed!

Makua - At one time, my husband was not able to eat barely anything either.  His doctor reluctantly prescribed Megace (Megestrol) and it worked immediately.  I know that it is very expensive, but thankfully our insurance co. paid for it.  Hopefully your son will be able to start eating again soon!  Godspeed!

Trish - Have they ever done any blood tests at all?  Normally a chemistry panel would include 3 different liver tests, ALT, AST and Alkaline Phosphatase.  If any of these are elevated or your hemoglobin is low, you need a more thorough exam.  I definitely would ask about these tests and get a 2nd opinion on the liver scans.  My husband has Cholangiocarcinoma, which is the reason  I am on this discussion board.  However, I was diagnosed with hemangiomas earlier this year.  They were not looking for this at all, but they showed up on an ultrasound done for another reason.  I then had an MRI and the radiologist determined they were hemangiomas.  One was 8 cm and I did have 2 smaller ones.  All of my blood tests were normal except for my white count, which has been low for over 10 years.  I was told that  hemangiomas are very common and there was no need for a follow up.  My mother also has hemangiomas.  She was told to never let anyone biopsy them as she could bleed to death.  I've never read anything like that before, but maybe it is dependent on where the hemangiomas are located.  On another note.... I know that there is someone in this forum who was wrongly diagnosed with hemangiomas, which turned out to be CC so be vigilant!

Jason. .. have you and Andrea ever considered the HAI pump for treatment?  It has done wonderful things for Ron, my husband.  Read my latest post under "What's working"
It sounds like Andrea would be a good candidate for the pump and the side effects are minimal.
I suspect that it was more likely the Xeloda that was making Andrea sick rather than the radiation.  That is wicked stuff!

Ron had his first post-HAI pump CT scan done this week and WOW is all I can say!  Profound results!  To refresh anyone's memory who might not recall Ron's situation.... he was diagnosed last August, went through 4 rounds of Cis/Gem, had to quit that because of neuropathy, started Xeloda, had to quit that after day 2 because of side effects, then was off all treatment for 4 weeks waiting to see a doctor at MSK for possible HAI pump.  While waiting he started on Gem/Oxy for 2 weeks.  HAI pump was put in the end of Feb this year and they also were giving him Gemzar every week for 3 weeks.  During those 3 weeks on Gemzar he ended up in the hospital 2x and his neuropathy returned with a vengeance.  They stopped the Gemzar and he has been on only FUDR in the HAI pump  now for 5 weeks.  After only 2 treatments of FUDR (two weeks at a time) and only 3 months since the first treatment his large tumor shrunk by 33% and the medium sized tumors shrunk by over 50%.  His blood tests are fantastic.  CA19-9 is lowest since the start, CEA is negative, hemoglobin is highest since start.  All other tests are normal with the exception of one liver enzyme, which is slightly high due to the high doses of FUDR.  His onc says he doesn't need anymore systemic chemo (mostly because he simply can't tolerate any of them) and she is giving him a 4 week break from the FUDR.  He looks and feels better than he has since the start.  What a change!  A re-section may be in his future.  That's all we're praying for.  He still has a long way to get there, but it's sure looking good right now.  We are so thankful that the FUDR is working so well at killing the cancer and Ron can live a normal life today.


(80 replies, posted in Introductions!)

Ron's onc told him that he'd only have 5 to 6 mos. If he chose not  have chemo.  With chemo he says 2 - 5 yrs. I believe that the pain Norbert is experiencing is most likely prprogression of the disease, from our experience.  If Norbert starts chemo and doesn't like the way it's affecting him, no one will force him to continue.  He can stop it at anytime.  Godspeed!


(11 replies, posted in General Discussion)

Wow! That's awesome that your husband was able to have surgery!  It is the only way to cure  CC so  he is very fortunate!  Was Dr. Fong one of the surgeons?  I understand that he went to COH from Memorial Sloan Kettering in NY. He has a lot of experience with CC. At any rate,  I pray for a speedy recovery and only good news in the future for your husband.

Lyrica has been working well for my husband.  He initially developed neuropathy after only 3 rounds of Gem/Cis, so they stopped the Cisplatin.  The neuropathy did eventually get better but did not disappear.  The Gemzar was discontinued later on for other reasons.  A few months later, his onc decided to start up the Gemzar again and after 1 round the neuropathy returned with a vengeance, plus he developed pneumonitis, both of which were attributed to the Gemzar.  Until he tried Lyrica, he was taking 10 mg of oxycodone every 4 hours, which only helped slightly.  I strongly recommend trying Lyrica.

Thanks for the info, Matt.  Ron was given Lyrica while he was in the hospital and it worked wonderfully for him. His dosage was 75mg every 8 hours.  He said the pain went from 7 down to 2.  However, now we're fighting with insurance to get him a script!  Ron was on Gem/Cis at the start and after 3 months the neuropathy started so they discontinued the chemo.  The neuropathy improved quite a bit but since they started Gem again last month, the neuropathy returned with a vengeance.  Hopefully it will go away again and hopefully he can get the Lyrica soon.  It sounds like you guys have tried most everything available.  Ron has been only using oxycodone because he was worried about having more side effects from yet another drug.  I recently heard about the electro-stimulation and wondered if it helped.  Praying that Lisa soon have relief!

Hello, Olympic.

First of all, I've found out more information on Ron's diagnosis since this last post.  His actual diagnosis was "pneumonitis", which presented as "ground glass opacity" on the CT scan.  The pulmonologist told us that this is how it looks on the scan.  They did every imaginable test their was to rule out infection and nothing was positive so they're pretty sure that it was caused by the Gemzar.  So.... no more Gemzar.

Okay, on the pump.  It is so irritating to me why they don't want to allow patients from out-of-state have this pump as an option!  The only reason we even knew about it was because our oncologist here in AZ had worked with it some in the past.  That's a long story!  So.... he sent us to MSK in NY and they agreed that Ron would be a good candidate since his cc hadn't spread beyond the liver and 1 lymph node.  He also could not tolerate any of the systemic chemo.  However.... Dr. Kemeny told us that we were going to have to make a commitment to travel to NY every 2 weeks.  We told her that we couldn't do that and why couldn't our AZ onc work with it?  She finally agreed that we could come every 2 mos.  I'm sure you read my previous posts on how that all turned out.  I STRONGLY recommend that you try to have this pump put in.  As in Ron's case.... he had no other option.  I have found out that the drug they use in the pump is not easy to get by physicians (through a distributor), but they CAN get it.  The whole problem with living out of state is this...... Dr. Kemeny at MSK is the only one who works with it.  She decides the chemo formula according to your blood tests and scans.  The actual procedure of emptying and filling the pump is simple.  I could do it myself.  As our onc says, "It's not rocket science".  But the formula apparently is rocket science.  Dr. Kemeny told us that she doesn't want to be "bothered" by getting phone calls from all these out-of-area doctors calling her every 2 weeks.  I can understand her reasoning, but gosh.... can't they get more doctors on board with this?  Ron hasn't had any scans since the pump was put in so we don't know how well it is shrinking the tumors, but we think it is working very well.... because, he no longer has to take pain meds constantly for abdominal pain, he has his appetite back, he's not nauseous anymore, etc.  Even though Ron had all kinds of ill effects from the Gem/Cis chemo and they discontinued the Cis a long time ago, Dr. Kemeny insisted that Ron continue to get Gem in his port, along with the FUDR in his pump.  His neuropathy got worse and now he has pneumonitis from the Gemzar.  I think getting the Gemzar was a bad choice of her to make but she's the doctor and who am I?  Here's my advice to you.... If you can't move to NY, then talk to someone at MSK and find out if there is any other ONCOLOGIST besides Dr. Kemeny who works with the HAI pump.  DO NOT SEE DR. KEMENY IF YOU CAN AVOID IT!  If there is, see if they are willing to work with your local oncologist.  Your local oncologist would need to agree to work with it also.  Our onc told us all he had to do was watch a 20 min video for instructions.  Then he sends Dr. Kemeny recent blood test results and she sends him back the formula to use.  Every 2 months we are expected to go to MSK for new scans, which didn't happen now because Ron isn't cleared to travel.  Now, we are moving back to ND for the summer and our onc in Bismarck is all ready to work with the pump.  He's ordered the refill kits, FUDR and watched the video.  The onc here in AZ has had me watch him fill and empty the pump so that I can help the ND onc if necessary!!!  So you know how easy it must be now, right?  If all else fails, Dr. Kemeny would probably relent to seeing you every month and have someone local empty the pump in between.  This way she would have all your blood tests and scans done at MSK.  Would it be too difficult to travel to MSK once/month?  The surgery is tough.  Ron flew from NY to AZ on a 5 hr. flight the day he was discharged from the hospital and then back to NY again a week later.  This was a grueling experience, but he got it done.   There was a recent trial on this pump too, so why oh why is it so difficult for other oncologists to get on board figure out how much chemo to use in the pump?  I hope and pray that you can get help!  Some patients have been living for 6+ years with this pump when there were no other options! Godspeed!

Has anyone ever heard of "ground glass opacity" caused by chemo?  Well.... we have, unfortunately.  This is the latest side-effect Ron has been diagnosed with after he ended up in the hospital this week.  He presented with a fever, chills, cough and extreme fatigue.  After all kinds of blood tests and scans were done in the ER, it was found that his hemoglobin was down to 6.6, WBC was elevated, oxygen saturation was extremely low (80%), temp of 101.5, low sodium and ground glass opacity (inflammation in the lungs that showed up on a CT scan).  Ron was given 3 units of blood, lots of fluids and antibiotics.  They haven't determined the cause of the opacity in the lungs, but are pretty sure it was caused by the Gemcitabine, which he hasn't had for 2 weeks.  They are culturing his blood and sputum and tomorrow he'll have a bronchoscopy to rule out other causes.  In the meantime, he is on 15% oxygen and they're giving him steroids to reduce the inflammation in the lungs.

Ron was scheduled to be in NY on Tuesday to see Dr. Kemeny at MSK and have his first scans since his HAI pump was put in last February.  Unfortunately, if his oxygen level doesn't come up, he will not be cleared to fly.  The Pulmonary physician told us that if the chemo (Gem) is stopped the opacity will resolve itself but it is unknown how long that will take - could be 2-3 days or 2-3 weeks.

Besides this problem, the neuropathy in Ron's feet has reared it's head again and the pain has been almost unbearable for him.  He is taking Percaset and Oxycodone every 4 hours, which helps.  His Onc suggested Lyrica, but I read in the links above, they recommend Cymbalta.  Has anyone tried either or both of these?  Ron is always apprehensive to try anything new because of all the side-effects, so I'm not sure he will try either one.


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

Oh, wow!  That is awesome news!  My husband had the HAI pump put in at MSK the end of Feb.  We will be returning to NY on May 6th for his first scan since the pump was put in.  Ron has been getting only Gem in his port because of past problems (neuropathy) with the Cis, but now the neuropathy has returned with a vengeance so I suspect his Onc will discontinue the Gem also.  We are praying that Ron's results will be similar to yours!

Julie - I am curious.... did you have any other satellite tumors and if yes, how did these present on the latest scan?

Praying for continued awesome results for you!

My husband who has cc, has been told by his oncologist that anytime his temp. is over 100.5 he needs to be on antibiotics, but I'm sure this can be different for each patient.  I suspect that you have an infection.  Can you call the surgeon on call and have them give you a prescription for an antibiotic without them seeing you again.  If not, can you go to an Urgent Care Center or would your only choice be to go to an ER?  If I were your Caregiver, I would be a little concerned and if your temp goes up any higher, definitely get you to a Dr.  Good luck!


(80 replies, posted in Introductions!)

Olga - your story could almost be identical to mine.  My husband, Ron, was diagnosed in August of 2013, when he was 59 yrs old.  He was told the same as Norbert - palliative chemo was all the doctors had to offer him, or 6 months without it.  I was shocked when Ron decided to have chemo because all his life he said that if he ever had cancer he would never take chemo and he would never "go under the knife".  I'm glad that he changed his mind, and I too wondered if it was only for me.  After overhearing him talk with some of his friends, I found out that it wasn't just for me.  He wanted to live longer than 6 months.  Ron was so worried that the chemo would make him sicker than he already was, but he was pleasantly surprised after his 1st treatment made him feel better!  The chemo started shrinking the large tumor and took pressure off his other organs from the very start.  Since then there have been many ups and downs and sometimes we both wonder if going through all the bad times is worth it, but then there are the good days......  I have told Ron  that he doesn't have to go through any of this for me, that it is his decision to go forward with whatever treatments come next (they've had to change his chemo regimen several times due to complications).  I think this is something you need to do too.... have that talk with Norbert and let him know how you feel.  That way you'll never wonder.  I'm praying that everything goes well for both of you.