April 2, 2014 at 4:05 pm #81206kvollandSpectator
You will find that I am more than willing to share anything that might help someone else with this disease.
Mark was officially diagnosed with his surgery June 4th 2013 but we first heard the words Klatskin’s tumor the middle of May along with cholangiocarcinoma. Even though I am a nurse I had never heard the word before. Didn’t even know what it was.
His first rounds of chemo started in August after healed from surgery. He did 6 months of gemcitabine and oxaliplatin. He didn’t have a lot of side effects from those. Mostly just tired toward the end. He did develop an allergy to it at the end but it was the last dose anyway. The cold sensitivity was pretty tough as he had to drink warm water and all that stuff. He had a little neuropathy but that resolved.
Now we are doing 25 doses of radiation along with 5 weeks of 5FU along with Interferon and a single dose of mitomycin. The 5FU has been rough. In fact we just held everything for a week to give him a chance to recover. He lost some weight, was dehydrated, developed sores in his mouth and couldn’t walk but those resolved once they stopped it. We have two more weeks to go at a lower dose so we will see.
Nausea has off and on been a problem but the meds for it are so much better than they used to be that we have been able to control it with meds for the most part. The fatigue can be more difficult but as long as he sleeps at night I don’t care if he naps a lot during then day. He has lost some weight due to decreased appetite but I keep giving him different high protein stuff like protein shakes and Ensure so it’s not as bad as it could be.
Hope this helps and feel free to email too.
KrisVApril 2, 2014 at 4:39 am #81205
Thank you for your encouraging words. Do you mind telling me how long your husband has been struggling with this disease and maybe tell me a bit about the chemo treatment. What did he take, side effects, quality of life…results? Please tell me as little or as much as you want to share.
ChrisnaApril 1, 2014 at 9:33 pm #81204kvollandSpectator
As has been said welcome to the family that no one really wants to belong to. I know I didn’t but it was been the best thing I did through all of this.
My husband was not even 50 when diagnosed with his Klatskin’s tumor. It was needless to say a shock and was his second go around with cancer….he had Hodgkin’s lymphoma as a kid. We opted for the surgery since it gave us the best chance of long term survival and he had no chemo before hand.
He was told he had an 8% chance of dying on the table from cardiac complications and an “elevated risk” of dying from the cancer surgery or post-op recovery but we knew he had a close to a 100% chance of dying from the cancer if we did not do the surgery. My husband’s theory was he would rather take the lesser risk.
Yes, it was a long surgery – 14 hours – and a difficult recovery -12 days in the hospital – but he can through it well with negative margins and one positive lymph node. We have done 6 months of adjuvant chemo and now 25 doses of chemoradiation.
Every one is different on what they want and how they tolerate the surgery so it’s a very personal decision.
Does you friend have any other major health complications like heart disease, diabetes or lung disease? That could play into the concerns about surgery too.
I would definitely look at second and third or ever fourth opinions, the more information you get the better off you will be.
Hang in there and keep us posted. And remember we are here so you can ask questions and pick out brains too.
KrisVApril 1, 2014 at 7:21 pm #81203
Again, since surgery isn’t on the table for me yet, my only experience is the chemo and chemo /radiation part. I’ve seen a number of chemo combinations talked about around here. One of the most common is a combination of gemcitibine (Gemzar) and cisplatin (or some other form of -platin). I did the gemcitibine/cisplatin combo for 4 cycles (chemo 2 weeks in a row, then an off week). They also gave me fluids and a steroid and anti-nausea with the chemo. I tolerated it well. After 4 cycles, my doc did a MRI/ct (I’ve still never had a pet) and felt it was working really well. Not that he could see the tumor change by the MRI or CT, but he said all the teeny tiny inflamed bile ducts in my liver had cleared up and the inflammation was gone. That and the blood numbers told him it was working.
So, instead of just finishing another 4 rounds of chemo, we moved to radiation with chemo to try to kill the sucker dead. I go to radiation 5 days a week. My chemo changed then because the gemcitibine doesn’t mix well with radiation. Instead, I’m taking something called 5FU, which I get through an infusion pump that I wear Monday – Friday. I get my cisplatin and fluids on Monday, just as I used to.
Next week is my last dose of chemo. I finish my 30 days of radiation 4/15. Then I wait a month for internal inflammation to go down before I do new scans. They will be the key in deciding next steps.
I’ve felt pretty good through most of this. Minimal nausea – that’s the worst for me. My work has been supportive (thankfully).
I asked my doctor why I’d never had a pet scan. He said that he didn’t think it was necessary. Mine hasn’t spread. He said that if he were looking to see where there was metastasis elsewhere, he’d order a pet, but that it didn’t show anything any better than an MRI or CT on the bile duct.
I agree, you guys are getting confusing info. They need to spell out what it is they recommend.
My doctor mentioned two different chemo protocols when we were starting out, told me what they were and why he recommended the one I did. Doesn’t mean if it stops working, I can’t try another one.
Good luck.April 1, 2014 at 7:01 pm #81202
Thank you so much for your caring response. We just have a hard time committing to such risky surgery and chemo when in fact they cant see a tumor and the PET scan did not pick up mets!!.
Mike is feeling generally quite well and everyone says he looks good. Even the Doctors commented how good he looks. While he had jaundice he lost 40 lbs., but he was overweight at that time. He is keeping his current weight of 190 lbs.
Now we have discovered a hernia where his scar is..so more stuff to worry about.
We are also confused about the chemo- the onc said a mix of 2, the surgeon talks about a different mix and quotes an ABC trial type mix (we have no idea what that is). It gives us some sort of feeling that no one really knows what should be used.
Has anybody done ‘Chemo sensitivity testing” before taking chemo??
Thank you for letting me vent!!
ChrisnaApril 1, 2014 at 5:53 pm #81201
My klatskin is extremely difficult to see on any scans as well. They aren’t always a definitive mass. I guess I used to think of a tumor as something solid, like an egg. Mine is more like an amoeba – with little tentacles. My radiation oncologist showed me my scans in January and I understood why they said it was so hard to see. And, despite an ERCP procedure months ago, they were unable to get a tissue sample.
I’m all for 2nd and 3rd opinions. I had a second opinion before I started with my chemo here, because I was initially told no surgery. That doctor (Dr Chapman at Washington university/Barnes hospital) came highly recommended. He agreed with what my docs here said and I am within blocks of a major facility that sees a fair amount of this.
As to the last question, if chemo isn’t curative, why consider it? Honestly, that’s one each of us has to answer personally. I hope my chemo, etc. will lead to surgery. It may not. If not, I hope it leads to quality of life for as long as I can have it. And I’m talking years. I have young grandchildren. I have too much to do to go at 56. For me, chemo/radiation has been a slog, but I have been fortunate that it seems to be working and isn’t kicking my butt so much that it’s not worth it. That’s not true for everyone. And that’s why I think each person has to make that call. Chemo can be started and, as some have found, stopped if they can’t handle it. It is really rough on some people.
I have a friend (my age) with stage 4 mesothelioma (probably from breathing fibers her dad brought home off ships when he was in the navy). She’s opting for a naturopathic way to have quality over quantity and I respect her decision. She’s single, no kids, no immediate family.
Other than the arthritis (and, of course, the cholangiocarcinoma), how is your friend’s health. What does he think? It’s all overwhelming at times. I know.April 1, 2014 at 5:24 pm #81200
Thank you so much for making us welcome!!
Here are more details… The original laparotomy was done in Winnipeg by Doctor Lipschitz last November 4. Our second opinion was with the Doctor in Toronto (Princess Margret) via tele-health, and we do have the clinical note from there where the odds were put down in writing..so no misunderstanding there.
Other than the stent changes, there has been no allopathic treatment.Some of my questions would be : 1. why cant they see the Klutskin tumor on scans?
2. Should I get a third opinion..ie Mayo Clinic ( its about 6 hours drive away)?
3. If surgery/chemo is not curative…should it be considered at all?
Thank you for caring,
ChrisnaApril 1, 2014 at 4:47 pm #81199
Hi, I’ll add my welcome as well. This is a great source for info and support. I can’t comment on all your friend’s issues, but I have a klatskin tumor too (diagnosed early October 2013). I’m 56. Mine was not operable due to location (wrapped tightly around common bile duct and arteries). I have done chemo and then chemo+radiation to shrink/kill it. I am finishing up my chemo/radiation in the next two weeks. We’ll see what’s next. All that to say, chemo is often given before surgery. There are plenty of others on this board who have had chemo and then surgery (I hope that’s in the cards for me, but we’ll see). Everyone reacts to chemo differently. Some have a really tough time and others seem to not get the worst side effects. But, I do echo getting him somewhere with experience in this rare cancer.
I can also comment on the bile drain tubes. He’s not alone in having them changed out and, in fact, he’s doing good in terms of time they are in. I got the drains in mid October. I’m 7 changes in, my last was last Tuesday and it was only two weeks old. I do everything I’m supposed to do, they just get clogged really easy. There is a whole thread on the tubes in general discussion.
LisaApril 1, 2014 at 4:11 pm #81198darlaSpectator
Welcome. Glad you found us but sorry you had to. I agree with the others that at 2nd and maybe even a 3rd opinion should be sought to try to get more answers and options before making a decision. Hoping for the best results for your dear friend Mike. You are truly a good & loyal friend. Take care.
Love & Hugs,
DarlaApril 1, 2014 at 2:20 pm #81197lainySpectator
Dear Chrisna welcome to our remarkable family, you have come to the right place. I too am surprised what the Doc said about low survival rate. When my husband had his Whipple surgery he was 73, the ONC Surgeon said it is a huge surgery but not life threatening like heart surgery. I have been on this Board 8 years now and have never read of anyone dying on the table. I also do not like a Surgeon assuming! I would get a second opinion ASAP. As far as the stents go, if they are plastic they do need changing about every 2 months or they can get clogged. Wishing you the best and please keep us posted.April 1, 2014 at 7:02 am #81196claremSpectator
What a great friend you are. Now you are here you will get so much advice and support.
I too am shocked at the complications risk post surgery. Yes, complications are a risk with some surgeries carrying higher risks than others but I would get that verified and ask specifically what complications does the doc mean.
If it were me or my friend/family member, as Marion has suggested I would start with seeking a second opinion at a centre specialised in dealing with CC.
XApril 1, 2014 at 6:22 am #81195marionsModerator
Chrisna….our Peter used to say: “welcome to the club no one wants to belong to” and I would like to add: “and is happy to have found.”
Princess Margaret Cancer Hospital, Toronto, sees a high volume of Cholangiocarcinoma patients; if I were you, that is the place I would look for an additional opinion. Quite frankly, I am a bit shocked to hear that 50% to 60% of surgical patients die of complications. I am wondering: is there a possibility that you have misunderstood the physician making this statement?
Neoadjuvant (prior to) chemotherapy is administered frequently for reduction of tumor load. Subsequently many have the opportunity to undergo a resection.
I am sure that others will chime in real soon to share their thoughts and experiences with you.
Again, thanks for joining in and please stay in touch.
MarionApril 1, 2014 at 4:59 am #9744
My best friend Mike is a 58 year old male who was recently diagnosed with cholangiocarcinoma (adenocarcinoma). Here is his story:
For about eight years Mike has been treated for severe arthritis with Methotraxate. Last April, the routine blood tests showed some irregularities. Then he got jaundice. A stent was put in and scans showed some dilation of the bile duct. They suspected bile duct cancer. So resection was planned and attempted during the laparotomy. However, the Doctors took out some lymph nodes and two out of five were positive for cancer. They just stitched him back up cause they assumed he had mets everywhere. We just could not believe this!! We asked for more tests and got new scans done, including a pet scan. No mets found. We also contacted Doctor MacGulvray in Toronto and he said resection is possible but Mike should do some chemo first. Apparently this Doctor seen a Klutskin tumor on the original scans, but neither radiologist reports or new scans show anything definite.
In the meantime (its been almost a year), we immediately started a natural program, with changes in diet, vitamins, curcumin etc.
Mike is struggling with the decision to do surgery because the odds they gave us are: 15% he dies on the table, 50-60% he dies from complications after surgery, if he lives 5 years he has a 70-80% chance that cancer will be back.
Not good odds for sure. And Chemo before surgery seems crazy to me cause his immune system will be down….and he will need all of it just to survive!!!
Well, first we get the stent changed for the 4th time on April 8.
This past year has been a nightmare!!!!
Thank goodness I found this site. I have sooo many questions!! Reading your messages has helped a lot. You are in our prayers and we hope we can be in yours.
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