Newly diagnosed

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  • #91702
    mbachini
    Moderator

    Hi Carole,

    Just wanted to say that Neulasta kicked my butt too! I did better with the neupogen shots. After my experience with both, someone gave me advice to take a Claritan before shots and that would ease the side effects, you might want to ask your doctor about this.

    Melinda

    #91700
    marions
    Moderator

    Carole…..so sorry to hear of Neulasta side effects. Fortunately it eases within two days. Carole, by typing in the term “neulasta” in the search function, several older postings will appear. Perhaps you can find a tip or two in how to deal with the reaction to Neulasta.
    Please keep us posted. We are in this together.
    Hugs
    Marion

    #91699
    gavin
    Moderator

    Hi Carole,

    Welcome to the site. Sorry that you had to find us all here but glad that you have joined in with us all. Looking forward to hearing lost more from you about everything and please let us know how things go for you. And please if you can let us know as well exactly the name of the treatment that you will be having as I am pretty sure that you will find some info about it here on the site.

    Also, just to let you know and if you were wondering. It was me that deleted the duplicate posting of your above post. Just in case you wondered why it had went missing!

    All the best,

    Gavin

    #91701
    caroled
    Participant

    Thank you and so glad I found this website.

    I believe I will go thru two more months of treatment then a cat scan to evaluate my response to treatment. I just get a lot of fatigue with the treatment. A shot I get called neulasta after second round of chemo knocks me out for a few days with flu like symptoms . That shot does me in ore than the chemo.

    I do not believe it is proton therapy it is some sort of laster that will kill off the tumor. My oncologist said what it’s called but do not remember, I will ask him when I see him again.

    #91698
    marions
    Moderator

    CaroleD….a big warm welcome to you. I am glad you have found us. I assume you will have a scan real soon evaluating your response to treatment. How are you feeling? Do you have side effects related to current treatment? When speaking of high beam laser, are you referring to Proton therapy, also called proton beam therapy,a type of radiation treatment that uses protons rather than x-rays to treat cancer?
    Hugs,
    Marion

    #91697
    caroled
    Participant

    I was diagnosed with CC about a month ago. Last year was in the hospital and had cat scan. I had nodule on my lung and it did show spot on liver. No one was concerned with liver but got cat scan every six months for nodule. It appeared to have grown very little but Doctor wanted me to have pet scan. Liver showed up positive, had biopsy but origin could not be determined. Oncologist sent biopsy out for DNA and it is CC and possibly nodule in lung is where it has spread. The nodule is so tiny biopsy cannot be done so that is good news. The oncologist said it is very slow growing and on the side where surgery could be successful.

    I have no symptoms but have to had this tumor a few years.

    I am on chemo because it has spread every other week for 3 months. Doctor is considering using a high beam laser to kill off the tumor once it shrinks. Has anyone heard of this?

    #91696
    lainy
    Participant

    Dear Patricia, just a thought about your Carole’s emotional state. If you feel she cannot cope with this or draw strength to fight this, what about asking her to ask her ONC if he could give her a little dose of something to help take the edge off? If she says no to that she could possibly talk with her clergy or perhaps a social worker from the Hospital. Just a thought. You are right about positive energy and attitude as that does help the flow of things.

    #91695

    Thank you so much, Catherine, and Marion. I just visited Carole. She is in a bad place emotional depressed, feeling hopeless. I am happy she is getting a second opinion at University of Penn this week.I talked with her about positive imagery, positive attitude and how she must go into this feeling she has some power. No defeated attitude!
    I am so grateful to all of you. It is so difficult watching a loved one go through this. Patricia

    #91694
    middlesister1
    Moderator

    Dear Patricia,

    The “one nasty diagnosis” made me think of a discussion I had with my mother yesterday. In 2013, when first diagnosed, she looked online for info, but once her surgery was unsuccessful, she left the online searching to me.

    The other day she saw my FB post for World Cholangiocarcinoma Day and must have started clicking links because during our discussion she asked he to confirm that hers was the intrahepatic CC. When I did, she said that “boy this is a really bad cancer- I had forgotten how bad.” So although it’s a nasty one, some (not enough yet) are fortunate to being living with it and still have a good quality of life.

    I hope your family also gets to the point where they can forget what a nasty one this is; the statistics don’t tell the story for all.

    Welcome to our group,
    Catherine

    #91693
    marions
    Moderator

    Patricia…..welcome to our group. I assume she will be treated with gemcitabine and cisplatin. What about a biopsy? Has it been performed and tested for genetic/molecular alterations?
    Try to stay strong, we are here to stand by your side.
    Hugs
    Marion

    #91692

    Thank you do so much. I have been so very upset, crying, I fear I am going to lose both of them. My aunt who is the family matriach is 87 years old fearing the fate of her two kids. Life is just not fair. Thanks again, I will check in with you. Oh I forgot, she is very depressed! Praying for you also! Patricia

    #91691
    lainy
    Participant

    Hi Patricia, my husband had a Whipple and the surgeon warned us that if he saw it had spread once they got inside they would abort the surgery. On the better side members have gone through this and have to end up with chemo before a surgery. Quite often it does go well, I hope it works as well for your loved one. Your family is certainly dealing with a lot. Sending prayers to them all. I am glad they have had other opinions as well. Now we hope for a successful chemo treatment and then surgery. I know this is a shock diagnosis as unfortunately one does not know in the beginning that they have CC, no symptoms. Scary! Trust yourself, the rest will follow! When first diagnosed one will start out walking slowly and before you know it they will be running with the pack! Please keep us updated on her progress and below is a site you may find helpful:

    http://cholangiocarcinoma.org/newly-dx/

    #91690

    Hi Lainy, well she was on the surgical table, the doctor saw the bile duct tumor, and one in her liver. I questioned that many times. Surgeon wanted her to start chemo as soon as possible. They said she needed chemo and the Whipple would hold that up too long. We met with the oncologist Friday. I am a nurse so I check out his crediantals. He trained at University of Penn, and Mass General. He is a specialist in GI cancers. He is at MDAnderson in New Jersey. I had suggested a second opinion. When we met Dr. Morrison and his team, I feel very confident.
    There were no early signs. Some abdominal pain, and very exhausted. Then two weeks before Christmas, she was bright yellow. Her liver enzymes were off the wall. Within two week we know what she had. They went down with endoscope and knew what it was.
    Our family is dealing with her brother who was diagnosed with ALS in August. It has been a very emotional time.
    I am so grateful to have found this group. I am a newbie. I got to you through Cancer Centers of America.I look forward to sharing and getting support from all of you Sweet folks.
    If I left anything out, do not hesitate to ask. May God be with you all. Thank you, Patricia

    #91689
    lainy
    Participant

    Dear Patricia, I am so sorry about your Family Member but know that you have come to the best place to be for CC support. We have quite a remarkable CC family. May I ask why surgery could not be done. Also where is the member being treated. I would suggest a second opinion, even 3rd and 4th. You want to make sure treatment and Oncologist are very familiar with CC and it is imperative that treatment and ONC are experienced with CC. Below is a site you may find helpful and please give us as much info as you can and need answers just ask away. Wishing you all the very best and please do keep us posted.

    http://cholangiocarcinoma.org/newly-dx/

    #12210

    Family member diagnosed just before Christmas. She is stage 4 and the surgery could not be done. Chemo is to start next week. We are all so scared. Hoping chemo helps. Any advice from anyone??? God Bless all. This is one nasty diagnosis!

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