1

(5 replies, posted in Pain Management)

Thank you for your thoughts. I will see if the doctor can do something special with pain medication on scan days and also ask if a little pillow would be allowed. Thanks for your help!

2

(5 replies, posted in Pain Management)

Does anyone have any ideas of how to deal with pain due to having to lay down and stretch out for a PET or CT scan? My father has had pain in his abdomen for some time, but until recently he thought it was related to the Whipple surgery that he had about a year ago. About a month ago the pain got worse and it became more clear that is probably due to the 2 tumors he has growing in the area. He is now on pain medication, which seems to be controlling the pain for the most part. But when he has to go in for a scan, he has terrible pain. I think it is because of the position he has to be in for the scan. While I haven't seen it, he described it as having to lay on his back, with his arms extending up above his head on the table. Laying down tends to be a more uncomfortable position for my Dad, and I figure having to put his arms up probably makes this position even worse. I was going to suggest putting a wedge under his knees but he said they already do that. I'm thinking my dad can't be the only person out there with this problem. I'm wondering if anyone else has dealt with this problem or has ideas of how to make the scan more comfortable. I would really like to help him find a way to not be so miserable during those scans. If you have any ideas, I would love to hear them. Thanks for your help!

3

(5 replies, posted in Chemotherapy)

Thank you Patty, Kris, and Lainy for your ideas. Lainy, we actually just got back from a trip to Mayo (decided to go even though they wouldn't review records ahead of time). And we just scheduled an appointment with MD Anderson. We did get a second opinion closer to home since my original post (it has been a busy few weeks!) and are going to go with that doctor's recommendation for the next round of chemotherapy. However there is a disappointingly low rate of success so we are also trying to prepare for what we will do if it doesn't work.

Thanks again for your thoughtful responses.

4

(5 replies, posted in Clinical Trials)

Hi Marion,

Thank you so much for your quick and thoughtful response. I wanted to respond to you sooner but today was an eventful day (but mostly in a good way) in the quest for treatment options. Your feedback and support is very helpful. I was wondering if you could tell me more about the advocate that you mentioned. I'm not familiar with that type of role.

Thanks again!

5

(5 replies, posted in Clinical Trials)

I just joined the forum and would love to get the group's thoughts on clinical trials. I'm looking into a clinical trial for my father, and am finding that I'm a bit confused about the process. I'm posting this in the chemotherapy forum as well because it seems that chemotherapy clinical trials are often discussed in the that forum. By way of background, my father has extrahepatic cholangiocarcinoma. He had surgery (the Whipple procedure) where the doctors were hopeful they had a full resection, but followed up with radiation (with Xeloda) and then Gemzar just in case there was microscopic residual of the disease.

Just last week, (6 months after surgery and in the middle of Gemzar) we got confirmation that the cancer is definitely back, most likely in a few local lymph nodes and what sounds like sort of scattered around the area of the surgery, but not a well-defined tumor in one particular location. We were told that surgery and radiation are no longer options, only chemotherapy.

My dad's oncologist has agreed to delay the next phase of treatment (combination Gemzar and Cisplatin) for two weeks in order to allow us to search for a clinical trial. I would really appreciate any advice that you might have along the following lines:

1) what recommendations do you have for finding a clinical trial? I have found a number of clinical trials for recurrent and/or unresectable extrahepatic cholangioc on cancer.gov and clinicaltrials.gov. However, since I'm not a doctor, I don't really know how to go about figuring out which ones would be the most promising, or which ones would be the best fit given the specifics of my dad's cancer. We also are under time pressure since we only have 2 weeks until the Gemzar/Cisplain starts so I want to try to focus on trials that look the most promising and that my father is most likely to qualify.

2) I know every trial is different but the one we were hopeful about now looks like my father will not be eligible because of his prior radiation and chemotherapy treatment. For others that may have been looking for clinical trials for a longer period of time, I'm wondering if you have found this to be a common problem, or if some trials are more flexible on prior treatment. Also, does anyone have an opinion as to whether it would be more difficult to get my dad on a trial after he has had the 9 weeks of Gemzar/Cisplatin?

3) Even if we are not able to get him into a clinical trial right now, I'm wondering if he can get treated with the same drugs, just outside of a trial. I've noticed that many people on this forum are being treated with the same medications that I see listed in clinical trials. Is it possible to be treated with these medications outside of a clinical trial? I guess that means it isn't "approved" for this type of cancer, but if it looks promising enough for a doctor to recommend you go to a clinical trial, why not just treat with the same drugs if you can't get into the trial? Has anyone had success at some of the major cancer centers in getting treatment with clinical trial type drugs but outside of a clinical trial?

4) I really want to take my father to one of the large cancer centers such as MD Anderson in Houston. However, I'm having some trouble making headway over there. If anyone has any advice on who to contact or how to find someone to review my dad's records, please let me know. I called the main number and was directed to the GI patient access services. The woman I spoke with basically said that they could not see my father because he had already received a round of chemotherapy. Instead, she said I would need to talk to their center for targeted therapy, which does clinical trials. When I contact that office, I'm always transferred to a voicemail box. I have left three messages over the past week, but I have yet to get a return call. Any advice on how to get through?

5) We actually have an appointment at the Mayo Clinic next week, but they will not look at records in advance. I am hesitant to have my father travel to the Mayo Clinic only to have them look at his records and not offer us anything new. Does anyone have any advice/experience with going to the Mayo Clinic not necessarily for a diagnosis, but to find out about new treatment options and available clinical trials?

Thanks everyone in advance for sharing your advice and experiences. I've been reading the forums on this site ever since my father was diagnosed and I appreciate all of the information that you all have shared.

6

(5 replies, posted in Chemotherapy)

I just joined the forum and would love to get the group's thoughts on clinical trials. I'm looking into a clinical trial for my father, and am finding that I'm a bit confused about the process. I'm posting this here in the chemotherapy forum as well as the clinical trial forum because it seems that chemotherapy clinical trials are often discussed here. By way of background, my father has extrahepatic cholangiocarcinoma. He had surgery (the Whipple procedure) where the doctors were hopeful they had a full resection, but followed up with radiation (with Xeloda) and then Gemzar just in case there was microscopic residual of the disease.

Just last week, (6 months after surgery and in the middle of Gemzar) we got confirmation that the cancer is definitely back, most likely in a few local lymph nodes and what sounds like sort of scattered around the area of the surgery, but not a well-defined tumor in one particular location. We were told that surgery and radiation are no longer options, only chemotherapy.

My dad's oncologist has agreed to delay the next phase of treatment (combination Gemzar and Cisplatin) for two weeks in order to allow us to search for a clinical trial. I would really appreciate any advice that you might have along the following lines:

1) what recommendations do you have for finding a clinical trial? I have found a number of clinical trials for recurrent and/or unresectable extrahepatic cholangioc on cancer.gov and clinicaltrials.gov. However, since I'm not a doctor, I don't really know how to go about figuring out which ones would be the most promising, or which ones would be the best fit given the specifics of my dad's cancer. We also are under time pressure since we only have 2 weeks until the Gemzar/Cisplain starts so I want to try to focus on trials that look the most promising and that my father is most likely to qualify.

2) I know every trial is different but the one we were hopeful about now looks like my father will not be eligible because of his prior radiation and chemotherapy treatment. For others that may have been looking for clinical trials for a longer period of time, I'm wondering if you have found this to be a common problem, or if some trials are more flexible on prior treatment. Also, does anyone have an opinion as to whether it would be more difficult to get my dad on a trial after he has had the 9 weeks of Gemzar/Cisplatin?

3) Even if we are not able to get him into a clinical trial right now, I'm wondering if he can get treated with the same drugs, just outside of a trial. I've noticed that many people on this forum are being treated with the same medications that I see listed in clinical trials. Is it possible to be treated with these medications outside of a clinical trial? I guess that means it isn't "approved" for this type of cancer, but if it looks promising enough for a doctor to recommend you go to a clinical trial, why not just treat with the same drugs if you can't get into the trial? Has anyone had success at some of the major cancer centers in getting treatment with clinical trial type drugs but outside of a clinical trial?

4) I really want to take my father to one of the large cancer centers such as MD Anderson in Houston. However, I'm having some trouble making headway over there. If anyone has any advice on who to contact or how to find someone to review my dad's records, please let me know. I called the main number and was directed to the GI patient access services. The woman I spoke with basically said that they could not see my father because he had already received a round of chemotherapy. Instead, she said I would need to talk to their center for targeted therapy, which does clinical trials. When I contact that office, I'm always transferred to a voicemail box. I have left three messages over the past week, but I have yet to get a return call. Any advice on how to get through?

5) We actually have an appointment at the Mayo Clinic next week, but they will not look at records in advance. I am hesitant to have my father travel to the Mayo Clinic only to have them look at his records and not offer us anything new. Does anyone have any advice/experience with going to the Mayo Clinic not necessarily for a diagnosis, but to find out about new treatment options and available clinical trials?

Thanks everyone in advance for sharing your advice and experiences. I've been reading the forums on this site ever since my father was diagnosed and I appreciate all of the information that you all have shared.