Mom of Adult CC Patient

Discussion Board Forums Introductions! Mom of Adult CC Patient

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  • #98197
    sfbaybreeze
    Participant

    Shellsbells- I am so sorry for your loss, my condolences to you and your family. Tilly

    #98178
    bglass
    Moderator

    Hi Shellsbells,

    I am so sorry to hear this heartbreaking news about your son.  Please accept my condolences and prayers.  I hope you and your family find peace and comfort knowing your son had the best treatments you could find, and had his loving family at his side providing care and support throughout this cancer battle.

    Our community will be thinking of you during these difficult times.  Please stay in touch.

    Take care, regards, Mary

    #98177
    Shellsbells
    Participant

    Hello again,  on Feb 14, 2019 my 29 year old son’s body succumbed to this terrible disease.  In the last few months of his life, the cancer metastasized quickly allover his body, like wildfire.  from the lungs to the skin, back to liver, stomach lining, colon, spine and finally his brain, resulting in a very fast and unexpected early ending.

    He was taking Keytruda as a last chance option and was given 6 months just a week before his 2nd dose of Keytruda on Feb 1.

    He fought valiantly for 14 months, suffering tremendously through it all.  I’m so relieved he is no longer in pain, in the arms of his heavenly father.  I find peace in knowing he has a new body, perfect and whole again.  Cancer is dead, and my son’s spirit lives on for eternity! We have the victory!

    I’m thankful for your support throughout the journey.  May God be with each and every one of you!

    #97624
    bglass
    Moderator

    Hi Shellsbells,

    This latest news from your son’s doctors plus that he is not feeling well are no doubt worrying for him as well as for your family.  It sounds like with his doctors’ efforts plus having a second opinion, your son will soon  have a revised treatment plan that will hopefully stabilize the cancer.  From what you describe, your son seems to be in good hands, but it must be torturous to have to wait a few days to have answers.  Because this cancer is complex, part of the delay may be for the doctors to consult others.

    I have attached a link to information from the Cholangiocarcinoma Foundation website on staging.

    https://cholangiocarcinoma.org/the-disease/staging/staging-intrahepatic-cholangiocarcinoma/

    Sending prayers your way. Your son is blessed to have you and his other family members supporting his battle with this cancer, especially when bumps appear in the road.

    Take care, regards, Mary

     

     

    #97622
    Shellsbells
    Participant

    My son went to the ER Wednesday for trouble breathing and coughing up blood(he’s been doing so since biopsy).  They did another cat scan and his tumor is now the size of a lime. It’s enveloping his bronchials which is causing the difficulty breathing.  It’s also pressing up against his heart a little, but not causing any trouble there. There’s also an area in the lower lung that may be abscessed, with a super bug.  He’s on an antibiotic for that now. Both areas show necrosis which is prob causing the bleeding.  I know he’s suffering, but they’re moving so slowly this time.  The tumor seems to be growing quickly from a grape tomato size to a lime in about 4 weeks.  Funny how they use fruit to compare size.

    The genome results haven’t returned yet. He’s meeting with his radiologist Thursday to discuss possible treatment and also getting a 2nd opinion with an oncologist who’s an expert in cholangiocarcinoma at City of Hope Cancer Center.

    Does this new recurrence change his stage from 3 b to 4?

    • This reply was modified 9 months, 3 weeks ago by  Shellsbells.
    #97594
    bglass
    Moderator

    Hi Shellsbells,

    I am sorry to learn that your son received this disappointing news and now must gear up for another round of treatment.  The silver lining is that the recurrence was caught early, and it sounds like a good treatment plan is in the works.

    I sent you a private message in response to part of your question.

    This cancer tends to be a roller coaster ride with unexpected ups and downs.  Your son is lucky to have his family firmly lending support as he copes with this latest challenge.  Sending prayers your way.

    Regards, Mary

    #97593
    Shellsbells
    Participant

    My son had his biopsy last Monday… It’s back.  But now as a 2″ mass in the left bronchial/lung.  The original tissue and the new tissue have been sent away for genome testing and results should be back this week.  Treatment plans are pending.  As is another opinion from City of Hope.

    Has anyone here had CC metastasize to the lungs?

    My heart is breaking, and I can’t imagine him suffering through another round of treatment so soon.  I’m numb and in disbelief.

    #97483
    bglass
    Moderator

    Hi Shellsbells,

    It is good to hear from you but I am sorry you and your family are receiving news that is not as positive as you’d like..

    I just did a quick look at reports of coughing by our patients on this board, and there are many different causes, some related to cancer, some as a result of treatment and some due to something completely unrelated.  It is good your son’s doctor is working aggressively to track down the cause.  If not caused by the cancer, your son’s cough still set in motion finding a new spot in the lungs that might not otherwise been found so quickly.  Finding spots early is good, and hopefully will lead to a diagnosis of what’s going on and, if needed, an effective treatment plan to stop it in its tracks.

    Sending prayers and positive thoughts your way that this latest concern for your son can be quickly addressed.

    Regards, Mary

     

    #97481
    Shellsbells
    Participant

    Hello again.  My son completed his chem-radiation treatment July 12.  He started coughing a few weeks ago and had a follow-up visit with his oncologist for routine blood tests & PET scan. Doc put him on a z pack for 5 days, hoping it was bronchitis, and also ordered a CT scan.  His tumor marker was normal, but the PET scan showed a spot on his lung. 🙁  His cough continues, and he’s scheduled for a biopsy soon.

    I can’t breath sometimes… but I have to trust that this is all in God’s hands.  My son is so brave and he believes it will all be ok.  We were about to buy his family tickets to come and visit for thanksgiving.  And now, we wait.  Will keep you posted.

    #97118
    bglass
    Moderator

    Hi Shellsbells,

    Thanks for dropping by and letting us know how you son is getting through his adjuvant treatments.

    Now as mom, you are being called upon to be coach and cheerleader as your son hits some bumps in the road due to treatment side effects.  My own experience with radiation was feeling like something the cat dragged in toward the end – it does cause a lot of fatigue for many.  The five weeks of radiation did at times feel like an eternity.  But with patience, I got through it as we all do, and as your son will surely do.  My side effects cleared up as soon as treatment was over.

    For the nausea your son is feeling, there are a number of different remedies available, so if one isn’t working, your son may wish to ask for something different.

    Best wishes that your son’s radiation treatments go well, and that the nausea can be better addressed by his doctors.

    Regards, Mary

    #97117
    Shellsbells
    Participant

    I’m so thankful to have your imput and encouragement.  The few weeks my son had between the GemCap chemo and the chemo/radiation were blissful for him.  He felt healthy and hopeful again and was able to spend quality time with his wife and kids, along with friends and family.  He started the chemo/radiation this past week and says it’s been rougher than the GemCap alone.  He’s exhausted and nauseous and not looking forward to the hand/foot syndrome to return.  1 week down, 5 to go and he’s not sure he will make it. 🙁

    Will his body get used to the therapy? Will this be how the next 5 weeks go? I know everyone’s body is different and responds differently, but your experiences is all we have to go by.  So I thank you in advance and ask for prayers and well wishes!!

    #96954
    sfbaybreeze
    Participant

    Hi Shellsbells- I just wanted to echo what Mary has said.  My husband (at age 51) also went through the same protocol and at times it felt really intimidating — a huge surgery, followed by chemo, followed by chemo radiation.  But as he was recovering from the surgery, his surgeon said, “You are young and in relatively good shape so we are gonna throw the kitchen sink at you!”  In the crazy upside down world of this cancer it is actually a really good thing that your son “gets” to have all this intervention.  I’m so happy to hear about his clear scan!  All the best, Tilly

    • This reply was modified 1 year, 2 months ago by  sfbaybreeze.
    #96951
    debnorcal
    Moderator

    Mary,

    wonderful news!  I’m so glad your son is feeling so well.  In January, my husband (age 58) celebrated the third anniversary of his right hepatctomy and he remains NED.  There are survivors that beat this!!

    Debbie

    #96950
    Shellsbells
    Participant

    Congrats Mary!!  That’s amazing news and we are hoping for an amazing outcome for my son, as well 🙂  I’m praying for your continued health!  A heavy, heavy weight has been lifted from my heart.  Knowing that his wife, children, extended family  and I will have him around for a while longer.

    Again, you have been a blessing to me through this, as I hate to ask my son so many questions.  I feel like a burden to him sometimes and I don’t want to worry him with my constant concern and questions.  If I could, I would be at every appointment and on every detail, but he is grown and wants to be in charge of his care.  I’m learning to be encouraging and supportive from the sidelines!!

    Im a huge believer in prayer and in divine intervention.  So, I will continue to pray for healing and comfort for all patients and caregivers, present & past, who are dealing with the effects of this horrible disease.  <3

    #96949
    bglass
    Moderator

    Hi Shellsbells,

    What wonderful news your son’s PET scan was clear.

    I had the same treatment after surgery, chemo followed by radiation.  In my case, it was because doctors felt I was at a high risk of recurrence.  The chemo is intended to go after stray cancer cells that may have migrated elsewhere in the body.  Radiation was to “sanitize” (their word) the area of the liver where the tumor was removed plus the nearby lymph nodes, namely to get any microscopic cancer cells that might have been left behind.  As you note,  this is a frequent site of recurrence.

    This is a lot of treatment, but it is a good protocol.  In my own case, while there is no way to predict the future, it has – for which I am immensely grateful – kept the CCA from recurring now for two-and-a-half years.

    Regards, Mary

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