Introductions: new to board

Discussion Board Forums Introductions! Introductions: new to board

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  • #90731

    Thank you Malinger2. I am in that “anger” stage right now wrestling with the why’s with God. I know He’s in control in my mind, but my heart is a little slower. I very much appreciate the prayers and we will do the same for you and your family. He does drink the Boost every once and a while, but also supplements with the Carnation instant breakfast. The nutritionist suggested it and it is the best thing to jump start his appetite.

    Middlesister1, I may have to ask about increasing his fluids. If it would give him more energy, I’m up for anything. He hasn’t worked since September. He tried to do some from his laptop, but once again, the fatigue gets him every time.

    You all are awesome and a great help.

    Thank you so much!!

    #90730
    middlesister1
    Moderator

    Dear Sharon,

    Welcome to our group . Although this is a rare cancer, there are still far too many and I loathe every time it touches another family. Mom did 3 cycles of Gem/Cis (total of 9 weeks) and it did get better as it went along oncethey upped her fluids and adjusted the meds. We found that the steroids (dexamethesone) that were given in hospital before the chemo and also taken at home (days 2-4) helped with the nausea, and also gave her a bit more energy. However, unlike some here, I doubt she would have been up to a workday.

    Best wishes,
    Catherine

    #90729
    malinger2
    Participant

    Hello Dear Sharon and Phil, You have come to a great place for information and support. I am glad that your husband’s pain levels are manageable. During chemo, my husband drank a lot of Boost to keep calories up. He found that he couldn’t stomach many of his favorite foods, but could enjoy turkey, stuffing and mashed potatoes. Needless to say, we ate a lot of this. As hard as it is, maintaining as positive an attitude is key. I too was angry when people would tell me to trust God and turn it over to Him. I couldn’t turn it over at that time but kept praying. I now know that everything is indeed in His hands and a part of His plan. As a couple, we have never been closer and so filled with faith than we are now. Sad how it took this horrible disease to get to this place with each other and our faith. Don’t lose hope Sharon. As others have said, everyone is different.
    I will add you and your husband to my list for prayers. God bless you both.
    Melinda

    #90728
    lainy
    Participant

    Thank you Sharon. Moffett is very good and has treated CC. Gem/CIS is usually the first line of chemo given and hopefully will do the work. If Phil is already on pain Meds he is double duty tired, from the Chemo and the Meds but it is very important to keep the pain down as much as possible. I am so hoping for the new Scans to show improvement and I know February must seem like an eon away. We are here for you and we are one big family. Please keep us updated as we truly care. You never know how strong you are until “strong” is the only choice you have!

    #90727

    Thank you so much Marion and Lainy. His diagnosis and treatment are taking place here in Thomasville, Georgia. He did get a 2nd opinion from Moffit Cancer Center in Tampa. They confirmed original diagnosis and agreed with the regiment of gemcitabine and cisplatin. He has also been seeing a pain management specialist because his pain is a major issue. The doctors, both at Moffit and here, told us that the chemo won’t cure him, but that it would hopefully shrink the tumor to relieve the pain. So far, he can control pain as long as he takes his pain meds every 4 hours. If he goes longer than that, the pain is back and usually a much worse pain.

    There are more tests and scans planned for February when he finishes this first regiment ( 8 cycles) of chemo to see if the tumor has shrunk.

    #90726
    marions
    Moderator

    sharonandphil…..so sorry to hear of the diagnoses. Our members are very familiar with this cancer and will stand by you and support you all the way. You will learn that you have come to the right place and that many others are in a similar situation. I assume your husband’s regimen consists of gemcitabine and cisplatin, which is considered first line of treatment for this cancer. Hoping for others to come forward and share their own experiences with you as well. Stay hopeful, miracles do happen.
    Hugs,
    Marion

    #90725
    lainy
    Participant

    Dear Sharon and Phil, I am so sorry about your husband’s diagnosis of CC but know that you have come to the best place to be for CC support.
    May I ask where Phil is being treated? You want to make sure that he has a “team” who are well acquainted with CC since it is such a rare Cancer. Also we are firm believers in 2nd and 3rd opinions. Can you also tell us what regimen of chemo he is having? We can not say for anyone if it is getting better as only LABS and Scans will determine what is happening.
    I know how you feel as it is all new to you. Kind of feels like you have been hit with a baseball bat.
    When my husband was DX he was 73 and we had been married 10 years.
    I am posting below a site which you may find helpful. Also if you want to look anything up go to the top of the page and click on Search and enter a word. Lots of older posts will appear on the subject you ask about.
    Are any new tests/scans scheduled yet? I am wishing you both the best!

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

    #11925

    Hello. My 57 y/o husband was diagnosed with stage 4 metastasized CC in October. His tumor is in a place where surgery is not possible because of the veins/vessels involved. He has “innumerable ” lesions on his lungs and as of the lasts tests his cancer markers were at 900. He’s doing chemo in two separate doses every other week. He has been unable to work since September and his days are usually spent sleeping. He is on his 4th round of chemo. Can anyone tell me if this will get better? He has little energy for much activity. He does eat, but not a whole lot.
    I feel helpless in this situation and I find myself angry with God for allowing this. We have only been married 3 years.

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