Time to say Hi
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Hi Steph,
Welcome to the site. Sorry that you had to find us all and sorry to hear as well what you are going through with everything but glad that you have joined in with us now as you are so in the best place for support and help and I know you will get a load of each from everyone here. Thanks as well for sharing everything that is happening for you.
Real glad to hear that the treatment that you are doing at MD is working for you and I will keep everything crossed that this of course continues to work and deals with these tumours for you. Not so good to hear about the bone mets and mets are quite common with CC, and as Marion has said Jeff had some issues with these and posted a lot about them here on the site. You can search for his posts using the username Jeff G.
Hope that you keep on coming back here and keep us updated with everything that is going on. Please know that we are all here for you.
My best wishes to you.
Gavin
Showland…..I hope for someone to help us out with the question regarding bone mets. In the meantime I recall some previous postings many of which you are able to retrieve by using the “search”
function – top – page and entering the keyword “bone mets.”I recall a few discussions (years back) on Cryoablation,also called percutaneous ablation, cryosurgery or cryotherapy.
This single arm multi-center trial proved it to be effective against bone metastases:
http://www.ncbi.nlm.nih.gov/pubmed/23065947Others have been successful with Vertebroplasty:
http://www.sirweb.org/patients/vertebro … eoporosis/
or Kyphoplasty
http://www.radiologyinfo.org/en/info.cfm?pg=vertebroJeffG had worked out a system beneficial to him:
Quote:
“I have bone mets to ribs, left shoulder, and spine bone. I ‘m living almost pain free by taking Morphine 30mg every 8 hours and 4mg of Hydromorphone every four hours as needed for break through pain. You have to take without skipping doses or the effect of relief is not maintained. I tried skipping and ended up in hospital for three days for pain management and was up to 60mg at one point. As you know we all respond differently but this is what works for me; and I still stay pretty active”Our Karen (oncologist, and member of the Cholangiocarcinoma Nursing Advisory Board, posted the following info:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=93057#p93057I hope to have been of help to you.
Best of luck,
Hugs,
MarionThank you all for the warm welcome. I appreciate your kind words and encouragement. Will keep you updated as my radiation progresses. Lainey, yes my oncologist is awesome and has me on a pain regimen that’s been working so far. Unfortunately, narcotics are the only thing that touch my pain but I’m thankful for them when I need them. Has anyone else had experience with pain from bone mets? Would love to hear if anyone has other things that have worked for them…..
Thanks again for the nice Hello!Showland…..thanks for joining in. As the others mentioned, we are glad to have you here. Absolutely thrilled to hear of your great response to the current treatment, which I
Bone mets are not infrequent with this cancer and I wish and hope that you similar to many others, will respond favorably to the upcoming radiation treatments. The majority of our postings reflects a drastic pain reduction following their first and second application. I wish the same for you.
Please stay in touch, we care and we are in this together.
Hugs,
MarionHi Steph,
I too am glad you finally decided to introduce yourself. So glad you found us but sorry you had a need to. It does seem there have been more younger people being diagnosed with CC. of late.
Good to hear you are being treated and that the treatments are working. Hoping you can get some relief for the pain you are experiencing.
Welcome to the best place to be when facing this disease. We are a very supportive group and are here to help and support you too in any way that we can. Look forward to hearing more from you and hopefully all good.
Hugs,
DarlaHi Steph,
Very happy you took the leap and came forward. Although it does seem that we are seeing far too many people who are getting diagnosed at such young ages. Already you have been through so much in the last year. It’s great to hear that you not only got into the trail, but it’s working on the tumors. I hope they quickly find something to alleviate/treat the bone mets as well.
Best wishes and welcome!!!!
Catherine
Hello back at you, Steph and welcome to the best place to be for CC support. We are sorry you had to find us but glad that you did. Well, you may know that shrinkage is one of our favorite words and am very happy you got accepted in to a trial at MDA. Is your ONC giving you anything for pain? So glad you have stopped lurking and have joined our family. Please keep us updated on how you are doing as we truly care. Below is a site you may find helpful:
http://cholangiocarcinoma.org/newly-dx/
Hello all! My name is Steph and I’m a 37 year old wife and mother of two (ages 4 and
, living in Fort Collins Colorado. I was diagnosed with stage IV CC on January 31, 2015. I have mets to my liver and bones. I had no symptoms but went to the doc because my lower back had been hurting and the pain was radiating down my left leg. Turns out I have a tumor on my sacrum that was pressing on the nerves coming out of my spine. It took about a month for me to get my diagnosis.
I received radiation to shrink that tumor in March followed by 4 1/2 months of chemotherapy (gemzar and cisplatin). I had very little response to the chemo and began a clinical trial at MD Anderson in Houston in August.
Currently I’m still on the trial meds. I travel to Houston once a month to get my drugs and for testing. I had scans at the beginning of December that showed the tumors on my liver are responding to the drugs and shrinking. The metastases to my bones are being more difficult however. In fact, some of them have been growing and causing me pain in my right hip/femur and left hip. I began radiation on those areas this past Friday that will end right before Christmas.
For some reason, it’s been difficult for me to get on here and share my story. I’ve spent several months however reading ya’lls posts and getting lots of great info. I feel like I know some of you already so I figured it was time for me to introduce myself. Wanted to keep it short and sweet… so that’s all for now. Goodnight all.
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