kvolland
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Andy –
A tough but wise choice at this time. Make sure hospice is aware from day 1 about his pain, make sure he does not down play it….and if he does try to talk to the hospice nurse one on one to explain the situation. If he had a port or a PICC line in then they can start Dilaudid IV and then he can get a small amount all the time and have a button to push when it gets worse….a PCA like in the hospital. You can try icing the area but I bet it is referred pain from his stomach.
Couple of things to remember….Oxycodone and Morphine come in several forms…..long acting given two or three times a day, short acting that work very quickly and liquids that can absorb in the mouth and work very fast. Do NOT worry about addiction. At this point that is the last worry. If a medical professional refuses narcotic medications due to the risk of addiction….find someone else. Also there are pain patched called Fentanyl which only need to be changed every 2-3 days. If he is in pain then he needs medicated.
The other thing is if hospice does not bring it up then please look at the Five Wishes which is a great way for the patient to talk about how they want end of life to be. I like it because it lets them make decisions. I will give you the link to one place to look at it.https://www.agingwithdignity.org/five-wishes.php
Good luck and feel free to email me.
KrisV
Michelle –
Oh Gosh, congratulations to your mom for having a great surgery. The recovery was a little ugly but the clear margins and no nodes make it wonderful.
My husband had his surgery in June 2014 with clear margins the second time and 2 nodes positive. He too had a rough recovery. They told him 5-7 days in the hospital and he had 14 total…he couldn’t move for three days due to pain in his shoulders then got a blood clot in his arm from the PICC line. He did chemo (gem/oxaliplatin) then did radiation with chemo (5FU). His theory was that he wanted every chance there was to beat this cancer.
What I can say is that when/if it comes back it is usually fairly aggressive and hard to manage after that. Whether then extra treatment helps I don’t know but it’s the best shot at beating it. I would look at your mom’s age and general health. Do you think she could handle it? Everyone reacts differently to the chemo from really bad to walking through. My husband had very little problems with the Gem/Ox but the 5FU darned near killed him (he had severe and rare reactions to it).
It’s a tough decision and one many people have had to make. Good luck and keep us posted.KrisV
Kerry –
I am so sorry for your loss. I am glad that it happened the way it did, for both him and you. Sounds likes you have a good handle on things. May I say that with grief, we all travel through it differently and I think your 33 wonderful years will help with that process. You and your family will be in my thoughts and prayers.Hugs,
KrisVLee –
Great news. Just make sure he drinks gatorade or something similar to make up for the fluid loss and according to our Interventional Radiologist it should only be a liter to a liter and a half out put daily. Hope this helps his feel better. So glad things went well.KrisV
Andy –
It is a very tough situation, especially when one family member is in denial. I have been a home health and hospice nurse for years. My suggestion is that you/your family talk with your mom and explain to her that hospice is meant to achieve two goals – keeping him out of the hospital (at home) and comfortable. Hospice changes the goals from a “cure” to keeping him comfortable so they just treat the symptoms that you see such as pain, high ammonia levels, etc. Also you may be able to talk to hospice about the transfusions…..often times they will not pay for them but they will not stop you if you want to get them on your own….such as having your insurance billed for it instead. A transfusion can be considered palliative (to alleviate symptoms) and if you push hard hospice may still pay for it. I would also talk about quality of life versus quantity of life.
I am sure it would be better for your dad. We got hospice in for my husband but only three days before he passed. I wish we had been able to get them in sooner but he didn’t get really sick until just a few days before he died. I always would opt for sooner rather than later. Hope this helps some. If you want to ask more questions please feel free too email me. dazoo3563@comcast.netKrisV
Good for you Gavin. I used to bike 8 miles three days a week and walk 4 three days a week….of course that was before I married Mark and moved away from my gorgeous lake…..now I just have a highway to dodge cars on. The pilates does help with my back.
Lainy if you feel like cleaning you can come help away at my house. I am trying to get things rearranged to put new furniture in finally.
KrisV
Donna –
I read where it says that it’s a Klatskin tumor. That is what my husband had. It was mostly in the left branch with some infiltration into the right plus it was in the lymph system with two nods positive and perineural infiltration (running along the nerves). He was able to have surgery….14 hours of surgery but he survived it. I would make sure that you have several surgical opinions since some surgeons are willing to do it when others aren’t. And also remember that chemo can shrink things.
Other than that just keeping plugging away at it.KrisV
Dear Jenny –
Welcome to the best little family that no one really wants to be a part of. Sorry that you have to join us. You have however found a great resource to help you and your family.
So glad that is sounds like you are being very proactive. It also sounds like you have a good plan going.
It does seem that Gemcitabine and Cisplatin are the drugs of first line. The platin drugs in general are the second drug. My husband did Oxaliplatin and I know others have done carboplatin. One thing to keep in mind is that while surgery may not be an option it very will could be later down the road. There are those on here who have been told that and ultimately been able to have surgery. Also there a several studies out there that you may look into.http://cholangiocarcinoma.org/professionals/research/clinical-trials/
Good luck and keep us posted.
KrisVYou are doing what I need to do. I need to quit eating junk….I am a stress eater….and start eating better. And I need to start walking again plus doing my pilates. I just need to set my mind to it but it’s hard right now. Glad you are doing it. Maybe I will get motivated soon.
KrisV
Oh man, Gavin, are you telling me whiskey is not the answer?
Not that I would but I sure understand about reducing stress….learn to say NO. If you don’t really want to do something it is okay to say NO. I had to learn that one. And you don’t even have to justify it by saying you are too tired. Just say NO!
KrisV
Cathy –
So awesome. I love to hear it! You give such hope to so many by traveling this road.Congratulations!
KrisV
Dear Donna –
Welcome to the family. Sorry you had to join us but you will find us to be a great source of information.
You are right Gem/Cis is the first line for this. My husband did Gem/Oxaliplatin but then Ox and Cis are in the same family. Should be fairly well tolerated.
Also you mentioned that you saw a lot of bad news related to this cancer. I would suggest looking at this post and see all the good stories….even those with stage iv inoperable that have survived for a long time with their disease.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8883
Good Luck and Keep us posted.
KrisVLee –
I hope this all goes well too. This is a rough road for all involved. Getting his bilirubin down will make him feel better too.KrisV
Kathy –
Best words in this world are Surgery followed by clear margins. Way to go on being able to have surgery. I have to say that is probably one of the biggest tumors I have ever heard of so I think you might get that award too. It really sounds like you have a good team on your side. And remember it is not all bad there is a there is the thread with people’s survival milestones. There you will find plenty of good news and you can add yours to it too.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8883
Good luck and Keep us posted.
KrisV
