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I am heartbroken, my mom has been in remission from this terrible disease for the past 15 months and now we have just learned that she has spinal metastases, and her time is very limited. She is in so much pain and just went down hill over night. I am desperate and looking for anything to help her. Has anyone been to the Burzynski Clinic in Texas???
Dear Jen, I am so very sorry to hear about your Mom. I have never heard of that Insititute but you do want to make sure that anywhere you go has a lot of experience with CC. What does the ONC suggest you do at this point? Is Mom in Houston or out near you. In Houston is MDAnderson and there are some excellent Hospitals out in your neck of the woods. I hope, first of all that they can get Mom's pain under control, that is the most pressing issue! Please keep us updated.
Lainy, thanks for your response. No we live in N.H. This Clinic was suggested by someone. Many people say that it is a scam, just looking for money and some say it saved them. It is very expensive and most insurance companies don't cover the cost. We have a second opinion scheduled at Dana Farber in Boston to see if she would be able to do any clinical trials. Her Dr. is doing pallative care (chemo) did rad. already she says at best time left is 12 months, but with her weakness and pain levels the ONC says probably less time. Right now she is in the hospital recovering from a flu and uti, soon to be going to rehab to try to rebuild her strength. We just found out in November that this was back and she is going downhill so fast. Just concered about precious time and how uncomfortable she has become.
Jen...welcome to our site. I am so sorry to hear of the painful metastases your Mom is experiencing. Jen, we have had only one inquiry re: the Burzynski Clinic and that was many years ago. Here is the link:
http://www.cholangiocarcinoma.org/punbb … hp?id=1464
Bone mets are not uncommon with this cancer and control of pain is of utmost importance.
http://www.cholangiocarcinoma.org/punbb … hp?id=1527
Others have been able to control pain with an epidural or spinal pain pump. Medications used are marcaine, dilaudid , mophine and clonidine, sometimes in combination of all.
You might also want to make an appointment with a radiologist in order to see if radiation is appropriate. Stay on it, dear Jen, and look for aggressive treatments in order to eliminate the pain your Mom is experiencing.
Hopefully others will chine in and share some of their thoughts with us also.
Please, keep us posted.
Hugs,
Marion
Jen, the most important issue is to get the pain under control and once that happens it is time to just make sure Mom is has little pain and use the time to make happy memories. No one has an expiration date so we really never know. You might also want to talk to the ONC about ordering Hospice Home Care as it can be ordered a year ahead of time and they can do a lot to make Mom more comfortable. Hospice does not mean you are at the end but certainly is a wonderful and helpful tool.
Thank you Marion for your feedback. I did find the just the little bit of info you shared on the Burzynski Clinic after I made the post. I do appreciate all of your information. I am just grasping at straws at this point. She did do radiation when we first found out and it helped with the pain a bit, but now it is worse than ever. Thanks Lainy, you are right.
Jen...not all patients suffer from extreme pain however; those that do need to be treated aggressively. I am somewhat of a stickler on this subject and have frightened many with my comments, but pain control is one of my pet peeves and I strongly believe that has been neglected by the medical community and that it demands a universal protocol. Hence I am starting a link for palliative care with the hope that it will be adopted for CC patients universally.
Your Mom’s present stay at the hospital provides for the perfect setting for establishment of a pain regimen. This order will be adhered to by the rehab personnel, hospice, etc.
I would make sure to have a pain specialist involved (some anesthesiologist specialize in pain control outside the hospital settings also.)
Most likely you already know of the bothersome and often times painful side effects of pain medication, but I would make sure to discuss with the physician the use of stool softeners in order to avoid repercussions of blocked stool.
Good luck and please keep us posted.
Hugs,
Marion
Marion
Jen , my husband had mets to the spine and had terrible pain. After trying many different options he finally went on methadone with oxycodone for breakthrough pain.
Sorry for what you are going thru. Sending Hugs of support your way.
Laurie
Laurie,
Thanks for the information. Sorry about you husband! This is such a terrible disease 
....it breaks you heart to watch a loved one suffer and feel helpless.
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