1

(3 replies, posted in Introductions!)

Dear Barry,  Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you through the first leg of the CC journey. Knowledge is the most important tool to begin this fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose and the Hospital for treatment, are very experienced with CC. Don’t be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/ 
Please do keep us updated on Colin's  progress as we truly care.

2

(4 replies, posted in General Discussion)

Dear GRSharp. I love this it is both true and so beautiful. Thank you for posting this.

3

(1 replies, posted in General Discussion)

Dear Carmen, please make sure that the patient's Doctor is aware of the saliva problem as he should know about it and would probably know what to do. Best wishes.

4

(116 replies, posted in Introductions!)

Dear Tiah, I am so very sorry to read about your Mum. She is resting comfortably and remember that even though she is sleeping she will feel your touch and soft whisper's of I love you. I personally found that by releasing our loved ones to go to their peace it also helps us to better accept that journey.

5

(9 replies, posted in In Remembrance)

Dear Anna, what a beautiful person you are and I am sure your Dad is so very proud of you! One thing I used to do was to keep our CC books on hand and when going to a Doctor like a GI, GP actually almost any, I would give him/her a book. It is surprising how many are still not in the know when it comes to CC.

6

(24 replies, posted in Introductions!)

Dear Spokanemom, FANTASTIC news. Looking for more good news in posts to come. News like this makes the whole family HAPPY!

7

(5 replies, posted in Introductions!)

Dear LOU ,  Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you through the first leg of the CC journey. Knowledge is the most important tool to begin this fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose and the Hospital for treatment, are very experienced with CC. Don’t be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/ 
There are quite a few Meds for Nausea and perhaps a change would do well for your wife. I know many feel that the more sick you are with Chemo side effects the more it is being effective. SO far nothing has been proven but it is a good thought.
I do want you to know that we have many members here who were DX with multiple tumors and Stage IV and they eventually went on to have a resection after chemo. Hang in and hang on this is quite a ride. Know that you are not alone we are all family here. Please do keep us updated on your wife's progress as we truly care.

Hi, Brigitte, wanted to wish you the very best for next Monday. Just let the tech know that your family here will not accept anything but good news! Yep! If it would all be that easy, right? Sending you all good wishes, vibes and hugs for some great news!

Red, Teddy did not have chemo but after radiation this happened to him. The ONC but him on B12 shots and what a world of difference it made. He had a shot once a month. You might ask the ONC about it and also make him aware of the extreme tiredness.

Dear Sandra, I am so sorry about your Mother and please accept my humble apologies. As to why people do what they do, I am still trying to understand. You just keep on being you and I am sure your Mother is very proud of you, her daughter.

I’M  STILL  HERE
I’m at your side each night and day,
In your heart is where I’ll stay.
You can feel, see or hear, I am not gone, I’m always near.
I’m the colorful leaves when fall comes round,
The pure white snow that blankets the ground.
I’m the first bright blossom you’ll see in Spring.
The first warm raindrop that April will bring.
I'm the first ray of light when the sun starts to shine,
And you'll see that the face in the moon is mine.
I'll whisper your name through the leaves on the trees,
And you'll feel my presence in the soft summer breeze.
I'm the salty tears that flow when you weep,
And the beautiful dreams that come while you sleep.
I'm the smile you see on a baby's face.
Just look for me, I'm every place!

Dear Joe, I am so terribly sorry to read your post about Mom. You are an awesome son as we can tell by your posts and your love and concern for your Mom. Sadly It is normal to feel as you do. Has the ONC recommended Hospice to help Mom and the family get through this journey? They are of great help and they give you the time to spend wisely being with Mom. I am thinking of you often and am sending prayers, strength and love to help you all along. Make the most of what ever time there is and we are all behind you.

OOPS! I should have stated that my post came from Live Strong!

Marion, I could not find anything on our site but did some other searching and found this:
The most important treatment for an allergic or irritant contact reaction to a medical adhesive is to remove the bandage or tape. Gently cleansing the area with mild soap and water is necessary to remove any residual adhesive. If possible, it's best to leave the area uncovered so it can heal. If a bandage is necessary, covering the area with sterile gauze and applying tape to the gauze rather than the skin prevents further irritation. For a true allergic reaction, over-the-counter antihistamines and corticosteroid creams may be recommended. If the skin is blistering or the redness is spreading, it's important to see a medical professional for treatment advice.
Not sure how you keep the gauze on without taping it!?!?!?
There are many types of medical adhesives, so one brand might irritate your skin while another will not. Paper and cloth tapes are less likely to irritate the skin than plastic tapes or bandages.

14

(3 replies, posted in Members' Cafe)

What a brilliant idea. Pat!!!!!!!!!!!!!!

Dear John, You are a true Miracle and it is an honor to meet a warrior like you! Yes, you are blessed and we are excited  to have you join our CC family and wishing you the very best on this, your 5th chemo journey! Wishing you success on this latest fight!

16

(2 replies, posted in Good News / What's Working)

Dear Sheila,  Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time.  Knowledge is the most important tool to fight CC. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject. If you type in fOLFOX QUITE A FEW POSTS WILL APPEAR TO HELP.
Make sure that the Oncologist you choose and the Hospital for treatment, are very experienced with CC. Don’t be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/ 
Please do keep us updated on your progress as we truly care.

17

(8 replies, posted in Pain Management)

Dear Fay, I am so sorry to read about all the pain your Mom is having. The only pain Med that worked for my husband was Morphine. Can you have her see a Pain Doctor? Once my husbands insurance turned down a PET and I found out that there were Imaging Companies here that would do a PET without Insurance for about 1500.00. Was ready to do that when the Insurance did come through after the ONC fought for us. Wishing your Mom the very best and hope they can settle this pain down!

18

(9 replies, posted in In Remembrance)

Dear RobertAnna, Please accept my humble condolences on the loss of your Father. 

As I sit in heaven and I watch you everyday,
I try to let you know with signs, I never went away.
I hear you when you're laughing and watch you as you sleep.
I even place my arms around you, to calm you when you weep.
I see you wish the days away begging to have me home,
I try to send you signs to show you, you’re really not alone.
Heaven is truly beautiful, just you wait and see.
Live your life, laugh again, enjoy yourself, be free.
Then I know with every breath you take you will be taking one for me.

Dear Kris, you are the little engine that could and you will climb that hill and I am wishing for everything to turn out good. I sure don't know how you keep track of it all! Hang in and hang on. Sure wish you loved closer so I could help. At least pick up some egg rolls!!!   lol

Julie, YES, YES, YES, YES, YES, YES, YES, Yes      What else can I say? Our Miracle called Julie!!!!!

Dear Charles. You know our favorite word is surgery and I am happy your ONC Surgeon is being wonderfully aggressive and innovative! Wishing you the very best and a successful resection. Cyber Knife will be a breeze.

Dearest Joe, YOU GOT IT! Absolutely walk away but not until you find a new ONC. Joe, we had a very bright and wonderful Moderator on this site named Percy. He was a Pharmacist at a BIG hospital in Chicago which I believe was Northwestern. My feeling was if Percy as a Moderator and Pharmacist thought it was the best perhaps it would be a good place to look in to for Mom. I am thinking Gavin or Marion can help on this, I hope.
One more thing is to listen to your gut it will mostly often steer you right. If I was treated like you have been treated I would be right out the door. Gather together as much of Mom's records and tests as you can so you are ready to make the change.  It is a good feeling to have when you can feel you have left no stone turned!

And as usual NEVER do anything new without the OK from your Oncologist! We are not Doctors just giving friendly advise.

Dear Joe, not to be redundant but as started above we are big believers in 2nd, 3rd and even 4th opinions. This is important with anything but especially with a cancer so rare. No ONC worth his weight will deny another opinion. As always wishing you and your Mama the very best.

Kris, sounds like you are getting your ducks in a row and yes , you look great! I am anxiously awaiting good news!!!! Sending much love and hugs!