My partner’s in palliative care unit now …but I still have hope.
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71PCL1029Yesterday 23:06:20
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Registered: Fri, 15 Oct 2010
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Hi,Rachel,
I am a cancer patient for sometime now,did your son recently have a follow up CAT SCAN OR MRI done to see whether the6 treatments works or not.( normally with chemo treatment , the scans should be done every 3-4month to monitor the progress of the therapy.) is it possible you email me the “impression ” segment of the most recent scan report for me to take a look for what alternative your son can have.I am not a doctor, but I may be of help to your son in terms of information. Like other member of this board said, 45 is too young to give up.
2nd opinion from John Hopkins liver specialist is a good start to evaluate your son’s case. Remember,nothing is impossible,hoping for the best and prepare for the unknown is part of this journey for this cancer.
Did he on Gemzar only or with other chemo agents like cisplatin or oxaliplatin or caboplatin .?.
In addition,I would like to know is it in hepatic or extrahepatic or peri hilar CCA,
IF you want to ,you can put up the scan result here too.
God bless.
If provided, information are for educational purposes only. Consult doctor is a MUST for changing of any treatment plans.I am a new member. My name is Rachel and the mother of a single and only son named Patrick who is also 45. He also was diagnosis with Stage 4 bile duct cancer. His tumor is unoperable as his liver is metastatic. He had 3 treatments of Gemzar and Cisplatin and 3 treatment of just Gemzar. He is been in the hospital five times since his diagnosis on November 18th. He has decided to quit chemo and go to hospice. He has given up as he lost 50lbs in 3 months, can’t eat without vomiting. I am looking for one last chance for him to survive. Is there anything I can do?My heart is broken to see him suffer anymore so I told him he can go on hospice. Any advice would be greatly appreciated.
Hi,ADRW,
If you are from Toronto,Princess Margaret is the place you should seek care in case you are not familiar with that they are one of the best cancer research center in north America.
Xeloda is another chemo option and can combine with Avastin together.
Chemoembolization or radioembolization are options for CCA palliative care too if no contraindications .God bless
Dear ADRW,
I am sorry to hear about your poor, dear Patrick. I understand what you mean when you say he is way too young. My daughter, Lauren, also has this terrible cancer and she is only 25. I also understand when you say you have hope. That is one thing Lauren and I have and will never lose. We will never give up hope that one day there will be a cure. We will never give up hope that one day Lauren will be able to have surgery. We will never give up hope that she will live a long and happy life. I wish the same for your Patrick. Take care and God bless.
Love, Pam
ADRW,
My heart truly aches when I hear of the suffering of others with this terrible disease. I pray every day that I will be as strong as the others that post on this sight. Never give up hope, for hope is eternal. My thoughts and prayers are with you and your partner. May you both be granted with the comfort you need.
Now, as Gil Favor used to holler (and still does in re-run), “Head ’em up………move ’em out”.
Thank you, PCL1029, Lainy, Darla, Nancy & Marion, for sharing your thought and experience. We will ask our oncologist about Nexevar and Avastin at our next visit. we are in Toronto, Canada.
Thank you for your support and love.
ARDW…. I don’t have much to add to the wonderful thoughts offered by our members, but I also wanted to welcome you to our site.
Know that you are doing everything right for the situation on hand. One always hopes for a situation to improve and Patrick, via the palliative care team, already has improved; the pain has been brought under control. That in itself is huge and something to be very thankful for. The days to come should be a pretty good indication as to how things will develop from here. Know that a tidal wave of love and support is heading your way.
Love and hugs,
MarionADRW, glad you reached out to us because we are people that care and understand. I was saddened to read of Patrick’s poor response to chemo and the pain he was in. I do hope his pain is under control now and he is comfortable. My husband didn’t do well with morphine and found hydromorphone worked well. There are a lot of alternative narcotics if one doesn’t work well.
As far as hope, I believe one must always have hope whatever we are facing in life. It is better to live in hope than despair. Hugs to you and Patrick. NancyADRW,
Don’t really know what else to say except that my thoughts and prayers are with Patrick and all of you who love and care for him. Nothing about this is easy, but know that there are many of us who understand what you are all going through and do care. Please let us know how things are going.
With Love & Hugs to All,
DarlaDear ADRW, welcome to our extraordinary family! It just breaks my heart every time a young new member joins. Not sure what is going on but have my own suspicion it could be environmental. About the only thing we know for sure is that we don’t know enough about CC. My husband was 78 and I kept him home in Home Hospice until his last 4 days. Most seem to journey to the end with no pain. Please make sure they are giving him what he needs and he is not on too high a dose. Teddy was on 75mg of Morphine twice a day with a 40mg breakthrough every hour. He also decided against Palliative Chemo as when he asked the ONC he said it would buy him a month so he opted for quality, some quality. Yes, I have heard of people going home from Hospice. Again everyone is different. We also like to say that we were not born with an expiration date stamped on our feet. The best I can say to you is to be strong, be very strong as many times the patient feels guilty for what they think they are doing to us as Caretakers. Where do you live? Please keep us posted on Patrick as we truly care.
Hi,
If I may suggest, ask your oncologist to see whether he can prescribe sorefenib (Nexavar)for him, It is a pill that the patient can take daily easily and most without serious side effects. It was recommended by my hepatologist for 2nd opinion in Dec. 2011.
It is not FDA approved for CCA but is approved for HCC(liver cancer).
It may give the patient a few more month without being hook up onto an IV.
Then doctor may not agree since your partner is in quite an advance stage; but if you insist,he might do it for you. I do not think it will hurt the situation.
Avastin is another choice and is seen to be effective in peritoneal carcinomatosis.but it needs to be given as IV.
One more point ,you can take your partner in or out of palliative care with his consent and receive treatment anywhere if you are in the States.
Be strong and hopeful always.
These are the targeted agents that may provide some miracle help that I know of.
BTW, I am a patient only,and if you said you have been lurking here for a while, then you know that I am not a doctor too.
God bless.Dear friends,
I have been lurking here for months.This website has given me lots of information and helped me go through the most difficult time in my life. Thank you all.
My partner, Patrick, was diagnosed with CC in Oct, 2011. By the time of the diagnosis, it is already in stage 4 and the tumor had spread to liver. Unfortunately, the chemo didn’t work well and the mass in the liver grew from 5x5cm to 11x10cm as of Jan, 2012. On Jan 17, the oncologist told us the prognosis is less than 3 months. Given the poor response of his 1st chemo (cis/gem), the oncologist said the 2nd line of chemo will not be promising either. Patrick decided not to take any further chemo treatment.
Patrick was sent to emergency afterward because of the pain from ascities. They drained the fluid out, controlled his pain, and discharged him after one week. The CT scan shows that there is peritoneal carcinomatosis. The doctor suggested palliative care unit but Patrick wanted to stay home. After receiving home care for a few days, the situation started to become unmanageable. Patrick was in pain all the time and needed someone with him 24/7. He couldn’t even lie on the bed straight.
We decided to send him to palliative care unit last week. Now he is taking 15mg of morphine every 12 hours, and morphine injection every 4 hours to control his pain. He eats very little and needs someone to assist him with bathing/walking/sometimes eating….etc. It broke my heart to see him getting weaker day by day.
I still have hope that the tumor would go away and he can return home someday. All our family and friends have been suffering the emotional pain because we love him so much. I pray that there is a miracle! He is only 45!
I wonder if there’s any successful/miraculous story here about people living in palliative care unit (hospice)?
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