Topic: New member

Hi.  My hubby (a "healthy") 70 year old was diagnosed in August with hilar cc.  He has just started chemo.  I am thrilled to find this sight as I am primary caregiver.

Re: New member

Hi Cristerry,

Welcome to this site and sorry you had reason to find us.  I am sure others will chime in soon but I wanted to make sure i said hello.

Being a caretaker is a big job but you've come to the right place as many people on this site are the primary caretakers and can address your concerns.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New member

Hello Cristerry and welcome to our extraordinary family but sorry you had to find us. Now that you dipped into our loving and caring pool we'd love to hear some more about your husband 's DX. Where is the CC, where is he being treated and where do you guys hail from? You have come to the best place as we have the most wonderful people here from all over the world. My husband, Teddy was 73 when DX.
Feel free to ask questions or even to vent away, we are all here for you. Looking forward to hearing more about your husband.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New member

Christerry....and we are thrilled to see you on this site.  Not that we do not wish to have met under different circumstances, but we have good reason to be part of each other's life.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member

Thanks so much for your kind, welcoming words.  Terry had not been feeling well since last may.  He initially blamed it on an antibiotic had been given after some eye surgery.  In July he had a regular chek with his GP who noticed he was turning yellow. This started the journey.  Ct's, MRI's, blood tests, etc.  We met with a cancer oncologist who explained they would use drains to release the bile, then, surgery and chemo, if necessary.  The drains have been the worst so far.  What was supposed to be day surgery to insert them resulted in a 5 day stay with them inserting a third drain. Then, home for a few days and a return for major surgery (they failed to remove the tumor) with another five day stay in the hospital.  He has undergone interventional radiology to remove the drains and insert stents 3 times with the final try resulting in removing two of the drains. He started chemo on Thursday.  So far so good, but the vn said his white blood count will be nil in a couple of days.  I also noticed a round, bright red spot on his upper right back. ??  He is being treated at roger Williams's memorial medical / cancer center in RI.  His oncology surgeon is dr. Katz.  His interventional radiologist is dr. Asanah.  they are both tops in their fields and both have been trained at  Sloan-Kettering.  His chemo dr. Is dr. Armenia.  Again, he is supposed to be on the cutting edge.  I might mention, my husband beat prostate cancer.  In 1993 he had his prostate removed and then radiation.  He was just a young 50 years old.  Thanks for listening.  His diagnosis is Hilar cholangiocarcinoma.

Re: New member

Dear Cris thank you for telling us about Terry. I think the only thing that stands out to me is why they had so many problems with the drains and stents? My Teddy had a problem with the stents in the beginning then they inserted them from the side and all went well. Teddy also had a red spot on his back but that was after he had radiation. Do not be shy about asking the ONC questions and if you see Terry getting a reaction from the chemo call immediately or go to ER. I know you like the Doctors but please keep in mind that sometimes it is good to seek a 2nd opinion when dealing with CC, it can give one more peace of mind. Do you know what kind of chemo he is getting? We are here for you so please visit often with questions and we will do the best we can and please keep us updated on Terry, we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New member

Hi Cristerry,

Just wanted to welcome you to this site. It has been such a blessing for me to find it and I hope you will feel the same.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New member

Hi Cris,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about Terry. But, I am glad that you have joined us all as you will get a ton of support and help from everyone here. Thanks for telling us about Terry, he sure has been through a lot.

Looking forward to hearing more from you and please feel free to ask any questions here and we will do our best to help in answering them for you. We are all here for you and know what you are going through, and please let us know how things go for Terry.

My best wishes to you both,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

9 (edited by PCL1029 Sat, 06 Oct 2012 12:13:22)

Re: New member

Hi,
I am a patient too, hilar CCA  if not mets to other part of the body, will stand a chance of surgery which is the only possible cure for CCA.
However, this cancer is relatively rare and experience counts a lot in treating this cancer. So if I were you, I will seek the MOST  experienced  specialist first  for help, where a medical professional trained from may not be as important as how many cases of hilar CCA they had treated before. So ask all of the doctors the same question above and if you satisfy the numbers of the patients of CCA they saw, then stick with them. If not, here is my suggestion. For everything in one place, go to John Hopkins for a 2nd opinion for liver surgical consult,then interventional radiologist and finally medical oncology consult in that order.

Finding this web site is a first step, finding the best way to handle this cancer is the final solution.

Keep in touch and
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member

Thank you all so very much.  He is on ciaplatin and gemcitabine.  His first day after chemo he seemed the best he has been for a long time.  Yesterday and today, though, he is sleeping a lot and his energy level is waaaay low.  Is this typical?  Will this pass in the next few days?  His next treatment is this Thursday.

Re: New member

Hi,
May be he is too tired or the ammonia level is high in his brain due to the disease advance. Since I am a patient, and if I am in the same situation, I will call the doctor to see what hIS/her  suggestion will be ; insist to talk to the doctor right away, then you will at least get the office staff moving a bit quicker for you to page him sooner. If he still sleepy or confused , call the doctor again to see to bring him to ER is needed if he still very sleepy and confused.
BTW, if he is just too tired, he will respond to your questions and his answer will make sense; in that case you may not need to worry too much. But if he looks confused and the answers do not make some sense, then I will call the doctor.
Hope the above suggestion helps a bit.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member

Hi
I'm on gem/cis also. The first day(fri) after chemo I have major body ache all night but feels much better the  next day.  I take Dexamethasone for 2 days after chemo and that gives me more energy I think. The 4th day I have no energy but bounce back on 5th and 6th day.  I hope that gives you some idea.
wishing your husband minimum side effects with chemo and good results.

Re: New member

Have been trying to get Jim to drink more fluids.  Gave him a Popsicle today.  Almost immediately after he got the shakes (tremors) and was freezing for at least a half hour?  Has that ever happened to any of you?

Re: New member

Hi Cris,

Is this the first time that this has happened to Jim? And does he have a temperature right now? If he does not have a temp then it could just be that he has had a bout of the shakes or rigors. These are quite common with this cancer and many people here or their loved ones have experienced them, and indeed my dad used to get them every so often. They can be quite scary the first time that it happens for obvious reasons.

There was a discussion on this issue the other day and here is a link to it.

http://www.cholangiocarcinoma.org/punbb … hp?id=8962

And I know that the search forum function will also throw up many other discussions on this issue as well.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member

The word Jim was supposed to be him.  Curse the spell check on my iPad.

Re: New member

Chris...Your husband may be experiencing cold sensitivity due to the Cisplatin; triggered by the popsicle.  You may want to stick to lukewarm drinks or, at least not very cold food or drinks.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member

wow! popsicle was  and is my fav evening snack, especially when I have dry mouth.