Cholangiocarcinoma

Dear Jeff,

We live in Cleveland, Ohio. Partially due to your emails on Bruckner, we went to see him Thursday, 3/16. We plan on starting treatment with him at the end of the month.

My wife has been living with cholangiocarcinoma since last January. We have been under the care of Dr. Dowlati at the Ireland Cancer Center. A clinical trial of rebeccamycin and oxaliplatin worked for about six months for my wife. Since then we have been on Gemazar then Taxotere. My wife is getting worse now. But she is still strong enough to try Bruckner's regime.

We will let everyone know how it goes.

Rick

If what you are facing is progression of one or two discrete tumors rather than generalized metastases, you may want to consider localized radiation treatment. Dr. Riad Salem at Northwestern Memorial in Chicago is a leader in Therasphere brachytherapy. Dr. Bruckner is familiar with him and believes he is good. My wife just underwent the treatment and we are very satisfied with their program. Therasphere involves injecting microscopic radioactive particles directly into the blood supply of the tumor. The particles lodge in the capillaries of the tumor and radiate at a high level for about 10 days, then go inert. The advantage over conventional external radiation is that the intensity within the tumor is very high, but the collateral damage to good tissue is very low. This is not a substitute for systemic chemotherapy for control of metastatic disease, but Dr. Bruckner will tell you that there are 3 targets for chemo: the big tumors, the little nodules that are the first visible evidence of metastases and the microscopic tumors in the making. Systemic chemo may be effective against any of the three without necessarily affecting the others. In other words, the fact that a large tumor is progressing does not mean that your chemotherapy is not slowing the metastatic spread. Going after the large tumor(s) with other methods, such as Therasphere, radiofrequency ablation or photodynamic therapy while you continue chemo may be a good idea. I suggest you run it by Dr. Bruckner. He will give you the right advice. Good Luck. Jeff_S.

Linda: any update on your dad? I was informed on 1/23/06 that I had another tumor in the bile duct that had been disconnected during the first surgery. The surgeon called in a drop down cell. It was near the head of the pancreas so I just underwent a modified whipple procedure on 2/6/06. Everything went well as far as surgery and I came home with a feed tube and a couple other drains. I just got rid of the tube a week ago. I am not scheduled to see my surgeon until June. However, I have developed a virus which has taken its toll on me with the coughing, congestion, etc.
Outside of that I feel good and the path report said it was contained so at the present time I am not scheduled for chemo or radiation.
That's the update on me...but I have not seen anything on your dad. Hope he is doing well. Please let me know
Suzieb

Hello Jeff and all,

Our treatment by Bruckner was a disaster. The one and only treatment wiped out my wife's bone marrow. Her paltlets are at 9000 and not coming back. Now we cannot have any more chemo. Granted my wife was very sick but now we have no options to fight any further.

No one seems to know what happened. I would caution everyone thinking of this treatment to be wary.

Hi,
My Father was just diagnosed with Cholangiocarcinoma, he is 61. He had a Whipple surgery and after his surgery he was told that this was the type of cancer he had. The doctors told him that they caught it but that they were not sure of the stage of the cancer as there was a gland that was removed which had some abnormal cells . He was told that he did not need to have chemo or radiation only that he had to have blood work and CT scans every three months. He and my mother are seeing a councilor and trying to deal with this but they are having a very tough time (which I know all of you are having as well). I feel very helpless and would appreciate any information any one may offer. We understand that the chance of reoccurring is high, I know that he would appreciate speaking to someone going through the same thing.

Jeff,

If you wouldn't mind sending me your information you have collected I would appreciate it. My husbands best-friend was just told he has this cancer. They live in Mass. so it isn't a long drive to get to New York or Boston to see if there is anything that can be done. They have been told by a GP it is not operable. They are heading to a specialist this coming week but, if they had any information ahead of time to look over it may help. This has been a HUGE blow to a family that is already dealing with more than their share of medical issues with other family memebers his wife included. I am at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- if this makes it to you,

Thanks for all your hard work on this issue.
Cathy

Hi Jeff,

I am intrested in receiving your information that you have collected regarding the disease.
could you please either post it or send it to me.
Thanks
Melanie

--- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

Melanie,

I am afraid that it would not be practical to post this information - there is just too much of it. But the editing of your email address seems to be done autmatically when you post something with an "at" symbol or a dot com. Try spelling out those symbols, as I just did.

Jeff

Sorry it took a while to reply to this - I do not check this account more than every couple of weeks. Try telling me your address by spelling out the "at" symbol and the "dot" before net or com. If that workd, I will be happy to send you what I have.

Jeff

I am so sorry to hear of your bad experience with Bruckner. My wife had very good luck with him and we have a lot of treatments under the belt - over 28 now. I sincerly hope your wifes platelets recover and she can keep up the fight.

Jeff