New to this disease and the board

[gavin]

Hi Lisa,

Welcome to the site. I am sorry that you had to find us all but glad that you have joined us all here. My dad was diagnosed back in 2008 with inoperable CC and he had a metal stent inserted to relieve his jaundice. Once the stent was in, my dad felt an awful lot better and looked better as well. He also had PDT to try and shrink the tumour, but the stent made him feel a whole lot better. Once my dad got home from the hospital he was able to go about his normal day to day life, although he was still affected by the after effects of the PDT. But he was able to go out, eat and do what he did before, but he just took it a lot easier than what he did previously.

Dad also suffered quite a bit from nausea later on and he was given medication to try and deal with this. Has your MIL been given any meds for her nausea? As to my dads pain, when he came back from the hospital after the stent and PDT he was on paracetamol 4 times a day and then that was upped later on to Solpadols 4 times a day then later again changed to 4 times. As Marions has said, pain can be an issue for some but not all and that there are a lot of differing types and strengths of pain meds out there. My dad didn’t suffer too much from pain and when he did, his meds pretty much kept it in check.

I know that all of this is tough to deal with right now and you have a lot of information to try and get to grips with, but please do not give up hope. We have been where you are right now and I know that you will feel a bit better once you know more and have a plan in place to deal with this. In the meantime, please keep coming back here as we will all help and support you through this, and please feel free to ask any questions and again, we will all help if we can.

Best wishes to you and your MIL,

Gavin

[marions]

Hello caregiver1….I am quoting Peter: Welcome to the club no one wants to belong to. And I add: but, are glad to have found. If your Mom’s diagnoses confirms this disease then a stent will give her much relieve. How fast this cancer progresses varies from individual to individual therefore, I don’t believe that anyone can predict the rate of progression with your Mom. It may be either, slow or fast growing. Although, pain can become an issue it is however, not always the case for everyone. Also, for those patients experiencing pain most likely they will find relieve with one of the several pain medications available. I am crossing my fingers for good results at the upcoming ERCP. Please, stay in touch. We care.
Best wishes,
Marion

[caregiver1]

Hello,
My mother is 83 and just diagnosed with a bile duct tumor. She will have an ERCP next week. My question is this. She cannot go through surgery as she has extreme anemia, which she had exploratory small bowel surgery for 18 mos ago, which just show small AVM’s. However, she still has a bleed somewhere as she needs frequent monthly tranfusions. She recently just only went two weeks and needed another transfusion.
I saw another person that has a history very similar to my mothers. My Mom has glucoma, macular degeneration (wet kind) – she gets Avastin shots in her eye to keep her from going blind.

Although all this, she is very active, still drives, shops and takes care of herself.
Her symptoms started with nauseau and vomiting after eating and extreme heartburn. Her AST and ALT were extremely high (one was in the 200’s and other was in the 100’s. Her Alk Pos was 421. Her bilirubin was only 0.7 which was strange.

If it is cancer, and she can only have a stent, what does her outcome look like? It sounds like a terrible painful disease.

Any info would be helpful!

Best to all of you in your heroic journeys,
Lisa

[ronidinkes]

wwemerald,

I also live in maryland have a 10 and 12 year old, if there is anything you need I am in owings mills.

My mother had her whipple 8-1 at Hopkins, and she is considering leary of the Gem/Cisp combo, I am trying to convince her to try it, if not for me for her grandkids…..she has reported back pain recently, I am wondering if her stage 4 has spread to her spine or if it is adhesions etc…

The whole thing scares me…but if you need anything find me on facebook and let me know what I can do help you.

Respectfully,
Roni Dinkes

[ronidinkes]

I hate to say welcome to this group, but we are a special group, who support one another no matter what, and we are here 24/7.

I am also a caregiver and find the whole journey difficult to comprehend shocking, and I just want to fix everything, make things all better for my mother, and especially want this whole thing to vanish and have life back to normal.

I am not sure what the right course of therapy is? I would check under the current clinical trials and see what he may qualify for.

There is nothing I can say to make this any easier for your or your family suffering at this time, other than we are here for you.

Stay in touch, talk to us, we are all listening and are in similar positions. There is strength in numbers!!!!!!!!!!!!!!!!!!!

Sending many hugs to your family.

Hugs,
Roni
ronidinkes@yahoo.com

[wwemerald]

Hello Caregiver,

I was diagnosed with stage 4 cc in April 2010. After several cycles of gemcitabine/cisplatin. In July 2010 my PET and CT scans showed bone metases to the spine, hips, and left leg. My doctor at Johns Hopkins recommends I start on 5-FU/Leucovorin plus oxaliplatin therapy. I haven’t started that regimen yet as my platelets have been too low but I hope to begin in the next couple of weeks.

I don’t have any bone pain right now. I am feeling pretty good with only some abdominal discomfort and tiredness. I do need to take a nap in the afternoon and am very tired at night.

I too have lost about 40 pounds and was very concerned. Now that I have been on a break from chemo because of my platelets my apetite is back and I love eating everything that the cisplatin took away.

But I went back to work a few weeks ago. I am very fortunate as I work from home and do medical writing so it has kept me busy and a good distraction as my two young children (9 and 11) are back in school as well as my husband who is finishing up his teaching degree. I use to travel extensively for work but my employer has been very supportive and is working with my schedule and the multitude of appointments. In April I didn’t even know that I would feel good enough to work again.

I started taking a yoga class once a week, its specifically for cancer patients. It really was good to be in a supportive group. I’ve never done yoga before but it really focused on breathing and feeling your body and accepting the moment. It really helped reduce a lot of the stress the appointments and therapy have taken their toll on me.

I hope my story helps.

[jeffgrieder]

Hello Caregiver

[lainy]

Dear Caregiver, welcome to our wonderful family. We are so very sorry to hear about your brother-in-law’s response to treatment. I echo what Marion said about reading up on our site through our search engine. I know there are older posts in there on bone mets. About the best thing you can do is just what you are doing by being an advocate for him and a tower of strength for you sister and niece. You may want to get a second opinion just to see if anyone has any other ideas for treatment. Please stay in touch and let us know how you are all doing.

[lalupes]

Dear Caregiver, I’m sorry I can’t answer your question but I’m sure there are others on here who can – & will – give more info. I wanted to come on & say hello, though, & to welcome you to this wonderful “family”. You won’t be alone on here.

My very best wishes to you, your sister, brother-in-law & niece.

Julia

[marions]

Caregiver….Hello and welcome to our site. I am sorry to hear that your brother-in-law is not responding to the previous treatment. As our Kris has mentioned, we try to stay realistically optimistic with this cancer. Metastases to bones are not uncommon and we have seen it often on this board. In fact, if you use the search function you will come across many of the previous threads describing this situation. Until other come along and share some more information with you, it might be helpful ro read up on some of the other threads hidden on our site. I am glad that you are reaching out because, the members on this board are known to be incredible supportive and helpful to anyone touched by this cancer. Additionally, have you consulted with other physicians familiar with Cholangiocarcinoma? Please, continue to reach out to us. We are here for each other.
All my best wishes
Marion

[caregiver2]

Hi–my brother-in-law was diagnosed with metastatic cholangiocarcinoma in January. He had 3 rounds of gemcytobene with oxyplatinum (spl on both!) and then a petscan. The cancer had spread from his left lobe to his right lobe and there is deterioration to the spots on his bones where it has previously spread. He has lost 30+ pounds and was too weak yesterday to take the new chemo. 5Fl or whatever it is called. He is married to my sister and they have a beautiful 15 year old daughter. I am trying to help my sister out in any way I can. I am reaching out because it seems like he is going down hill really quickly and we are not sure what other options there are for us. Does this sound like we are at the end or is there any hope he might get through this.

[Author]

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