Topic: Bone mets 33 months post-op

Hi all, this is Val living in Hong Kong.  My dad had surgery to remove a 3cm intrahepatic malignant tumour in June 2011, and as he was diagnosed early on, we had a rather peaceful and worry-free 2 years until the doctor found 3 small metastatic tumors in his lungs in May 2013. Chemo and radiation were done, but the tumor has just spread to his bones rather aggressively this year. Our doctor had radiation controlled some but not all of the bone mets.  Now we are back on chemo and as you all know, the drugs we can use and are effective are rather limited.  To complicate things more, the bone mets is pressing against his bone marrow so his body is not producing enough platelet (count only 50) so the chemo plan is delayed.
The pain is quite bad and it has limited his range of motions.  He's only 66 and has always been a very active, proud and manly man who fixes everything in the house.  The disease had really gotten the worst of him he's rather depressed and not willing to do anything.
Would appreciate any advice on pain management, we are already on the patch and OxyContin etc but they are not of much help.  Our doctor also said cryoablation is too dangerous to be performed on him given his bone mets are very close to nerves, etc.
It's a great pleasure to come across this foundation and website, and know that we are not alone.  I am rather useless when it comes to comforting words but when I tell him what the other patients are doing out there it seems to give him strength and offer him hope.  Thank you very much.

Re: Bone mets 33 months post-op

Val.....so sorry to hear of your Dad's pain issues with the bone mets.  We have numerous discussions on this issue, but what stands out for me are the reports by JeffG:
http://www.cholangiocarcinoma.org/punbb … hp?id=1694
http://www.cholangiocarcinoma.org/punbb … hp?id=1527

These thread is lengthy, but focuses on pain in general:
http://www.cholangiocarcinoma.org/punbb … hp?id=1527

I hope that others will come forward and share their experiences with you as well.  So sorry you had to join us for the reasons given, but we are happy that you have found us.  The members on this site are incredibly helpful, kind and caring and are always here to answer questions.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Bone mets 33 months post-op

Thanks very much Marion.  My dad did get Zometa at the clinic last week, I think it's working slowly and helps protect his bones from fracture but not so much for pain alleviation. I will enquire into the other options mentioned in the threads so far.
Many thanks again.  It's painful seeing him hurting.  I would take all the cancer and pain for him but unfortunately life doesn't work that way.

Re: Bone mets 33 months post-op

Val....you would think that in this day and age no one should have to suffer from pain.  Clearly there are many drugs out there but finding the balance of how much to use while staying lucid as well, continues to be an issue.  Keep trying, dear Val, you will find the answer. I understand how painful it is for you to watch your dear Dad suffer.  My heart goes out to you.  Stay strong and know that we are behind you, all the way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Bone mets 33 months post-op

Dear Valwong welcome to the best place to be for cc support! I am so very sorry to hear about your wonderful Dad. My husband did not have bone Mets but the ONLY pain med that worked for him was Morphine and Ativan for agitation. There are also things they can give Dad for depression. No one should have to suffer as he is. Wish I could wave a magic wand and take it all away for you. Please keep us posted on Dad's progress and we truly care!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Bone mets 33 months post-op

Thanks a lot for the kind words Lainy and Marion.  My dad is on 5 FU and Avastin now and the pain seems to have subsided a bit.  Hopefully it means the tumors are shrinking.  We will go back for blood test in 2 weeks so fingers crossed.  His CA 19-9 was 120 but was way below 30 when he was first diagnosed.  Truly yours, Val