My Wonderful Mother – Stage 4 Cholangiocarcinoma

Dear All,

My mother Kathy was diagnosed with cholangiocarcinoma back in May 2014 at the age of 64. She noticed she was starting to lose weight and felt a lump/mass on her side when she rolled over in bed one day but was otherwise in terrific health. The diagnosis was a blow to us all but it was isolated to her liver so it was deemed to be operable. She was operated on at Morristown Memorial hospital in NJ in May 2014 and the large majority of her liver was removed. During the operation, the doctor investigated the stomach area and chest cavity and found no further spread so the hope was that all the cancer had been surgically removed. Since so much of her liver had to be removed, the margins were smaller than what would be ideal so as to retain as much of her liver as possible. The biopsy came back showing that the cancer was at a stage 2 point so there was concern of microscopic spread which lead to the doctors putting her on a chemo regime of primarily gemcitabine, which had to be altered/reduced slightly in dosage to account for her body’s difficulty in tolerating the chemo (her white blood cell count was consistently low and she had to be hospitalized once with infection). Her last gemcitabine chemo treatment was January 2015 and the CAT scan that followed showed no return of the cancer, so we were thrilled. The plan then was that she would be monitored on a rolling 6 month basis just to make sure no other issues arose.

We were devastated when we found out from her 6 month scan in late June/early July that the cancer had not only returned, but it returned rather aggressively and had metastasized to her lungs. Since they were focusing on the lower part of her stomach, they followed up with a more broad scan and found small spots in her upper lungs as well and even an indication of metastasis to her spine (no compression). As soon as we found out it was back, we began looking all over the country (and beyond) for possible treatment options. Her doctor recommended FOLFOX but made clear that there was no expectation that the chemo could cure this cancer. We investigated hospitals and trials all around the country, including doctor Rosenberg’s trial at the cancer institute, which we thought she was eligible for after weeks of communication (they even sent a blood work kit to get her started on the trial) but once they saw her scans, they rejected from eligibility for the trial. That was a major blow since we thought there was real hope there considering what we had come to learn about Melinda Bachini and her success with the trial. Melinda’s situation seemed to sound a lot like my mom. We had a lot of medical professionals call Dr. Rosenberg’s trial team but we were told that nothing could be done to get them to allow her to participate.

We got a second opinion from the GI oncology team at Memorial Sloan Kettering Cancer Center in New York City, which was largely in line with the opinion of her oncologist at Memorial Sloan Kettering. They offered her the opportunity to participate in a trial that supplemented the FOLFOX with an experimental shot of ADI PEG that is hoped to stop certain cancers from picking up Arginene, which is an amino acid that certain cancers rely on for growth. Because there was no evidence that ADI PEG was producing positive results and the treatment regimen would have been immensely more taxing on my mother, she decided not to participate in the ADI PEG additive trial. Memorial Sloan is also running her blood work to do gene/DNA testing to see if any of the trials for certain gene mutations might be a fit.

Along the way, we also looked into consultations with Johns Hopkins, Mass General, MD Anderson, Baylor, Fox Chase and NCI but none of them could really offer any different hope that made it make sense to further delay her treatment and go through the additional travel. We sent her records to most, but most would not give any partial opinion unless she traveled to be seen in person for a consult.

Given the aggressive spread, based on the recommendations of the doctors involved, we got her started on FOLFOX after about two weeks of assessing all options (and immediately after we got the new scan back). She just underwent her second chemo treatment yesterday (8-18-15). The FOLFOX is administered every two weeks. After speaking with her oncologist, the hope for next steps is unclear. It seems they will scan her again sometime after the fourth treatment and then assess options from there, but it is unclear what those options might be. Certainly, if the FOLFOX is working, the expectation is that she will continue as long as her body can take it but I am concerned that her body may not be able to take too much more. She is convinced that her best hope is for a miracle immunotherapy trial to come along that might offer hope for a cure.

I have been in touch with the clinical trial finder hotline and have over 90 trials that could possibly be a match, but most are not and some are for specific gene mutations that she might not be eligible for. As non-cancer experts, there it is practically impossible to identify any trials that we can know to be a fit for her and worth resting our hopes on. We are in “wait and see” mode right now and that is difficult to accept. We have seen mention of Keytruda on this site and we are trying to understand more about that.

I am planning to have her get a third opinion at this point, possibly at the MD Anderson satellite location in Camden, NJ.

If anyone has any thoughts or recommendations, I would love and appreciate if you would share. I will do anything in the world for my mother. She deserves a long, healthy and happy life, and I will do absolutely anything to help make sure that happens.

I know everyone on here is suffering similarly, either directly or through loved ones, and this community of support is just wonderful to see.

Thanks to all!

Sincerely,
Steven