July 9, 2014 at 6:24 pm #81858claremParticipant
I just wanted to say how hard this must be for you both. Coping with CC is hard enough but when other medical issues halt your plan of attack it makes you feel helpless. I like your one day at a time approach. That got me through my darkest, hardest days, sometimes even taking it an hour at a time. xJuly 7, 2014 at 4:39 am #81857iowagirlMember
I’m sorry that I did not see your post and question about H. Pylori. What is known in research (in particular from Thailand) is that H. Pylori can exist in the bile ducts and was found in a significant amount of biles ducts of CC patients in a large study. As to how it gets into the bile ducts is another matter, but one theory is that a small few of the H. Pylori bacteria move from the stomach into the bile ducts via a gerd type motion (that’s probably not a good discription, but best I can do right now with chemo brain). Once in the bile ducts, the H. Pylori sets up house, grows and causes inflammation of the epithelial cells of the bile ducts. Once that happens,, over time, the area gets further irritated and eventually, precancerous and then cancerous growths begin.
I was found to have antibodies to H. Pylori, but never have been treated to get rid of it…..yet the poo test showed I no longer harbor the bacteria….so what happened to it. The Only explanation I can figure out is that it was “cut out” during my resection surgery when they removed my left liver lobe. I know that during the year before I was diagnosed, I first had C-Diff, a bad bacterial infection of the colon. That took Vancamiacin , a very strong antibiotic to kill off the C-Diff. Tests proved it was gone, but diarrhea continued just not quite so bad for the remainder of the year. Twice I was given a Z-Pack antibiotic and twice, the diarrhea went away on the 5th day of the antibiotic and everything was normal. The first time, it came back two months later. The second time, it didn’t come back ….but before one month had elapsed, I had surgery to remove the liver lobe. Vancamyacin can not kill H-Pylori…..but the Z-Pack is the right type of antibiotic to have an “effect” on H. Pylori…..just not kill it off completely. Thus, in my mind, the only way that H. Pylori was removed from my system was by cutting out the area in which it had settled and caused inflammation……that left liver lobe. H. Pylori is known for causing ulcers in the stomach…and eventually can cause stomach cancer. I hope that answer your questions about H. Pylori and my theory. Please feel free to share this with anyone you wish…including Norbert’s doctors. BTW…the meds to get rid of H. Pylori include two antibiotics and a prescription Prilosec type medication all at the same time.
I just caught up with yoiur latest posts about Norbert. It sounds like you’ve been having a very rough time of it.July 7, 2014 at 4:38 am #81856lainyParticipant
Dear Olga, great! I am wishing for this to all be solved tomorrow! I think the worst is just not knowing what can be done.
I asked for strength.
God gave me difficulties to make me strong.
I asked for wisdom.
God gave me problems to solve.
I asked for prosperity.
God gave me brawn and brain to work.
I asked for courage.
God gave me dangers to overcome.
I asked for patience.
God placed me in situations where I was forced to wait.
I asked for love.
God gave me troubled people to help.
I asked for favors.
God gave me opportunities.
I received nothing I wanted.
I received everything I needed. By Aaron HoopesJuly 7, 2014 at 4:20 am #81855
Thanks for the words of support, Lainy. And yes, the oncologists are aware. Whether they approve, I don’t really care because no dr could do anything to help Norbert stop the dry cough that was keeping him up all night for the past year. It stopped with the hemp. So we informed all his dr’s of the hemp oil and none of them have objected. If it helps the CC, I guess that would be a bonus. But that has yet to be seen.
OlgaJuly 7, 2014 at 2:55 am #81854lainyParticipant
Dear sadwife, I am so very sorry to read this post about Norbert. Not sure what to say about the hemp oil except I am wondering if the ONC ok’d it. Guess I am more scientific so to speak as we have yet to see anything thing “natural” that helps CC. Again, I hope the ONCS know about it. I think Rehab is a good idea and I think for insurance sake you need to go right from the hospital to be covered. So sorry what you both are having to go through and thank you for updating us. Please keep us posted as we really care.July 7, 2014 at 2:19 am #81853
Well, we were torn between chemo or not.
Norbert started chemo, gemzar/carboplatin on June 10, 2014. It was supposed to be two weeks on, one week off. After one round, we were looking forward to one one week off. That was the week of June 24th. The weekends after treatment were very hard on him so we resigned to the fact that the weekends would be days that we would have to take it easy and not do much.
Norbert has been taking hemp oil (Rick Simpson oil) since he’s been diagnosed. When he first started taking it, it made him very loopy(slurred speech, unbalanced, very tired) sometimes lasting well into the next day. After a couple of months taking it every night, his body adjusted and he no longer had those affects. On June 25th, he started taking a hemp oil that we got from a different source. It was different in color but supposedly was more pure and was pharmaceutical grade. That’s what we were told. It was supposed to be better than the stuff that he had taken before. I gave him the same dose of the new stuff as I had of the old stuff. That same night we received a phone call that his platelets were very low. He had an appt. with the oncologist on June 27th, so we didn’t worry about it.
The next morning I did my usual, went to yoga then to work. At work, I received a text from one of our sons that I misread and didn’t worry about. Later that day, he called me and told me that Norbert had fallen and just laid there. He heard him fall from another room, so he ran to him and helped him to the bed where he fell asleep. He said he was acting just like he did when he first started taking hemp oil. I figured that the hemp oil must have been much more potent than what he was taking and that he would have to sleep it off. Again, I knew he had an appt with the Dr the next day so I didn’t worry. It was our youngest sons 18th birthday and we had many family members (who didn’t know about the cancer) coming over to celebrate. As family came over, our sons and I alternated between Norbert and the guests. I made the excuse that he didn’t feel well.
The next morning, it took unusually long for Norbert to get ready for his noon appt. I chalked it off to the hemp oil and thought possibly the low platelet level. When we got to the Dr’s office he decided to give him a platelet transfusion and put off chemo another week. We were at the hospital until early evening. When we got home, some neighbors (who knew about the cancer) cooked for us. Norbert was still hardly speaking and when he did, he struggled to get the words out and was still extremely slurred. I made a call to find out what I needed to feed him to get the hemp oil through his system because I still thought it was the hemp. I was told there no way the hemp oil was in his system 48 hours later. I then thought it had to be the low platelet level and figured the transfusion would make it better. Than the neighbors that were over mentioned that he looked like he may have had a stroke. That never occurred to me, but for the rest of the night it was in the back of my mind.
The next morning I got him ready, which again took hours, and I took him to the hospital his cardiologist was out of (which is a different hospital than his oncologist is out of). There, they looked at him and immediately admitted him. He had had a stroke to the right side of the brain that left his left side weakened. He was there from Saturday, June 28 to Tuesday, July 1st. While there, we decided to move oncology from the other hospital to this hospital to keep all of his doctors under the same roof. It dawned on me that the oncologist was only concerned about the cancer and I needed to have all his Dr’s under the same roof for his best care overall. It was disturbing that he had spent 6 hours at the other hospital the day after the stroke and nobody there saw it.
After being released, he became very depressed. I have never seen my husband like that and it was breaking my heart. I was trying to do everything I could to distract him. We made plans to go to the lake house for the 4th of July weekend. He was at least looking forward to something. We started out on Thursday, July 3, headed north. We stopped at a store while my sister-in-law, who we were following, ran in to pick up a few things. I had been holding his hand since we left the house. While waiting for her, Norbert asked me to squeeze his hand. I told him I had been squeezing it. He said he couldn’t feel his left arm. I asked him for how long. He said for about an hour. I immediately took him back to the hospital where they once again immediately readmitted him. We’re still here and don’t know when they will allow him to go home. They’re considering inpatient rehab. The oncologist that we will be seeing out of this hospital was a little too forward than I was prepared for. We will have to put chemo off until he regains strength. If he doesn’t regain strength, than he may not be able to continue with chemo and we may have to look at the few options still available to him. It certainly wasn’t what I wanted to hear, but by the same token I appreciated his frankness and telling me that he wouldn’t recommend chemo if it was only going to make the remaining time miserable for him. I’m only hoping that he will make a nice recovery from the stroke so we can address the cancer.
We had been hiding Norbert’s cancer from most except for a few close family and friends but now we were not going to be able to hide this. We ended up telling most people about the stroke. This worked to end some of the rumors that have been floating around for quite a while.
I haven’t told anyone about the conversation with the oncologist yet. I’m hoping for a quick recovery from the stroke so I won’t have to have that conversation with anyone.
I’ve learned to take one day at a time and just hope for the best. We’ll see what tomorrow brings.May 30, 2014 at 8:26 pm #81852dianamartin65Participant
My husband has been on chemo (folfox and oxiplatin) every two weeks since January. He has a slightly different diagnosis of CUP, but they are 90% sure it is cholangiocarcinoma. We were afraid of chemo side effects at first, but he seems to be doing fine except for muscle aches and fatigue. He also has H pylori and has not been treated with antibiotics because the doctor said that the mixture with the chemo would make him sick, so he is one pantropazole (simialr to prilosec) and that has helped. My husband is in stage 4, met. to the bile ducts and lymph nodes. The chemo has reduced the largest tumor in his liver and has been worthwhile. He has been able to go back to work part-time and although he takes pain medication, it is bearable. If you find that the first treatment of chemo makes your husband sick, they they can alter the amount. It is still very much an art when it should be a science!
The study is at The Mayo Clinic and it is a registry of bile duct cancer patients. You can call Nasra Giama at 507-538-0097 and she can give you more info. I know this is a very confusing time. We are there to help you through it, DianaMay 30, 2014 at 4:39 pm #81851
Thanks everyone for all the encouraging words. Norbert is still torn between whether to do the chemo or not, so he decided to put it off for another week to think about it more. We were extremely disappointed with the responses to our questions from the oncologist. All we asked for was averages, but got absolutely nothing. He’s hoping for more input from people on this site since you folks are in the same boat facing the same cancer he is. The chemo they want him to have is gemcitibine and carboplatin(paraplatin). Two weeks on, one week off, for three rounds, than scan to determine if it’s working. Norbert did ask me to ask those of you that responded what stage each of you is in. I tried to look up the history of some of you and it was comforting when I told him that some of your cases were very similar to his. His biggest fear of chemo is getting sick when he feels very good right now. And if he does start it, but then decides he wants to stop, what’s the chances that he’ll get back to feeling as good as he currently feels?
I found a thread where you wrote something about your H pylori theory……I was wondering what that theory was because while Norbert was going through all of the testing to figure out what was wrong with him, they found H pylori and ulcers.
That thread had something to do with a database being put together, which I was also confused about, but would like more info on.
Again, thanks to everyone.
OlgaMay 30, 2014 at 4:19 pm #81850kvollandParticipant
I have said many times that we do not have expiration dates stamped on us anywhere. It might make things easier if we did…..although I would not want to know. Just remember that it’s hard if not impossible to guess how long someone might live even without cancer and the chemo. There are many stories on this site of people who lived much longer than initially thought with and without chemo.
My husband did have surgery with clean margins so there is much debate on if the chemo after really works all that well at keeping it from coming back. My husband’s thought was that he wanted to do everything he could to try to keep it from coming back. That was his same thought with the chemoradiation we just finished. But looking back on it, he does wish he had said no to the chemoradiation since the treatment was almost as bad as the disease.
He did tell me in the beginning that he would only do it as long as he didn’t feel too bad. And several people have started out that way.
KrisVMay 30, 2014 at 7:20 am #81849barbParticipant
olga, i am so sorry for what you and your beloved husband are having to endure.
perhaps my history will give you/your husband some hope. i had my 5th liver resection this past feb 27th. i found my own (first one) tumor in dec of 2002. my first surgery was feb 2003 and i was NOT offered any other treatment at that time. i researched and then forced ‘kaiser’ (my then health insurance) to do a pet scan and a tumor marker. it was then i found out the cancer had returned. i was offered radio frequency ablation by kaiser. the doctor that was to do the ablation had never done one herself. soooo, i paid out of pocket for ??? i think it was 3 more opinions. one of the docs i saw was dr lenz at norris cancer center in los angeles, ca. he advised me to not to do the ablation at that time and to see dr, selby. i was able to change insurances at the end of 2003. i met with dr. selby after that and he told me that i was operable. so i had my 2nd liver resection in feb 2004. i started chemo in apr of ’04 and was on chemo until ?? may ’08. i did have a few months off from chemo during that time. i had my 3rd resection in aug ’06, a VATS procedure (lung biopsy showed MAC infection not cancer); 4th liver resection june ’12, and my 5th feb 27th 2014.
it has been a roller coaster but i’ve experienced a lot of wonderful moments, events….
i have intrahepatic cholangio and was initially given 3 to 6 months. soooo, in spite of the down times i am very, very, glad that i have fought through so much and have lived for those beautiful moments.
wishing you strength, hope, and the best for this crazy journey.
iMay 29, 2014 at 9:43 pm #81848jscottMember
Here is the study:
This is the phase 3 trial that demonstrated a benefit from gem/cis compared to gem alone. Today, I would imagine many of the people with good chemo response undergoing other treatments that would hopefully further extend their lives.
I completely agree that it is old research that analyzes what happened, not what will happen. Research and treatments are branching in so many different directions, it is very much unknown the relevant current survival stats.
With all of the different approaches, I think it is very important to look not just at median responses, but also look at the size of the group that had a strong positive response.
If anyone is interested, I wrote something a while back that expresses my current feelings on fighting this disease and hoping to win. (and relates to the “lucky 10%-15%” from various treatments):
JasonMay 29, 2014 at 9:25 pm #81847dukenukemMember
Please supply a link to “… the famous gem/cis vs. gem study and not a study of gem/cis vs. no chemo (e.g. best supportive care).” Or maybe Gavin can.
My Onc said six months with no chemo but made no promises with chemo. As others have said in numerous places, the 50%/two years, 2%/five years is old data. Which is one more reason the Foundation is begging for responses. There are too many variables besides treatments that have a significant impact on survival. Fortunately, I have tolerated chemo well for 13 rounds so far.
“We don’t come with an expiration date!” Lainy/KrisV/KrisJ
My choice was to start chemo and to continue with it as long as it works (which it is after 11 months). My Onc has a Plan B (Folfox) and a Plan C (join a Phase 1 trial) in mind if it no longer works. Also, she dropped the carboplatin temporarily. I can always go back to the carbo/gem treatment before Plan B.
I’m with Carl – go for it for as long as Norbert can tolerate it.
DukeMay 29, 2014 at 4:52 pm #81846scheitrumcParticipant
I would make a recommendation to anyone with this disease to at least start chemo until such time as the side effects make chemo too challenging. This is an aggressive cancer and the chance of chemo knocking it back for extended periods of time is very real. It won’t destroy it but will possibly extend your quality of life for a longer period.
And the side effects do vary for each person. You may find these side effects to be minor, or at least worth going through if the chemo is helping. Be advised, they are also cumulative. That is, during the first few infusions, the side effects may be minimal. But the longer your husband is on chemo, the more these side effects may come into play.
As I started, I would definitely recommend chemo until your husband finds it too challenging or not working.
Good luck with your decision,
CarlMay 29, 2014 at 4:36 pm #81845iowagirlMember
Jason…..well said.May 29, 2014 at 2:23 pm #81844snowbirdMember
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!
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