Fay

Dear CC Family,

You are all so kind and caring, I’m not sure how I would maintain my own sanity without your input and support. Thank you.
The only med I can pinpoint some of her nausea to is miralax bc it got worse when we introduced that and returned back to her baseline after I cut it out. As for her pain meds, Yes she takes hydromorphone (contin since available in Canada and immediate release) as well as gabapentin which helps significantly so there must be some element of nerve involvement here. I would have to get a copy of the most recent discharge report to better understand what they meant by their statement regarding the nausea possibly be secondary to her surgery. The scans have not revealed any surgical issues other than a fluid collection that was drained recently. But draining this did not make any difference for her pain or nausea.
I personally wonder if the nausea may also be related to her pain control because we are still struggling with that. Her nausea is worse when she is in pain and better when she is not. We have an appointment with the pain and symptom management team on April 13th. I was going to ask if they think it will be beneficial for her to get a celiac nerve block or use medical marijuana. Her pain is always present. We just mask it with medication. It is right where the tumor was resected and then radiates to the right side of her back. CT scans have not shown any evidence of cancer since her surgery, however her pathology indicates stage 3 disease, so I don’t believe we are in the clear. Could this pain be related to perineural invasion since she has this per her pathology report. The pain brings her to her knees and it is heartbreaking and gutt wrenching to watch. I feel so helpless.

Fay
Xo

Thank you Marion. The tumor was resected but pathology did reveal stage 3 disease unfortunately. She is currently not on chemo or radiation. No one has provided an explanation for her nausea other than perhaps it may be related to the surgery even though she is 4 months out. There is no obstruction from what we were told. Anti emetics are not very helpful. She herself believes it’s the narcotics that make her nauseous. We have a referral for the pain and symptom control team so I hope they can help us out.

Fay
Xo

Dear Mary, Marion and the rest of this incredibly caring CC family,

Thank you all for your input. I have reviewed the SWOG S0809 protocol and suggested it to my mom’s oncologist – and I just felt shut down by him. This is despite me mentioning the positive trends that were noted amongst patients with positive margins and lymph nodes, and we have both of those. We were not even offered the option of any clinical trials. There was mention of cis/gem and that was about it which I am not keen on since I am all too familiar with the SE of those drugs. And prefer the SWOG S0809 protocol or some derivation of that.

My mom lives in Vancouver, Canada. I brought her here to Seattle to get a second opinion at SCCA (I paid out of pocket but she is worth every penny). She is set on staying in Vancouver, so at this point, I have to scramble to find someone who is willing to work with us. Versus watch my mom just progress to stage 4.

Thank you all SO much for your love and support. I read and reread some of your messages over and over again because I value your input. And just knowing that there are people who care, means a lot.

Hugs,
Fay

Thank you. We had our oncologist appointment and our CTs are clear however, there is a large fluid collection that needs to be drained. This is also unfortunately blocking the ability to visualize certain portions of her CT so we’re not really sure if she is in the clear.

Also, the oncologist seems to be leaning more towards no adjuvant treatment which makes me nervous in view of her positive boarders and one positive lymph node. He keeps saying that the evidence is lacking which I’m fully aware of, but just bc there is no statistically significant survival benefit doesn’t necessarily mean we just sit on it. I’m getting tired of dealing with physicians who don’t seem to want their patient to fight as hard as possible. I’m almost tempted to find another oncologist.

Hugs,
Fay

Hi Marion,

Thank you so much for your very kind reply. It’s nice to have this type of support when you’re going through something so emotional. I read the article, and am trying to be hopeful, but unfortunately my mother’s case progressed to stage 3 mostly because of provider negligence as far as I am concerned. So I don’t think the surgery alone was sufficient since we have a positive lymph node, positive margins, perineural invasion as well as tumor extending beyond the walls of the bile duct and into adjacent tissue.
As for my mother herself, she is in a lot of pain which is concerning but she just repeated CT scans and her oncologist will be reviewing those with us on March 6th. I will also ask for a referral to the pain service I think since her level of pain is unacceptable. I don’t even know what the next steps will be since we are dealing with a low grade cancer, and low grade tumors tend to be even less responsive to chemo. So I’m scared and I don’t sleep at night. The most frustrating thing is that I am in healthcare myself, but can’t do anything to help her other than advocate for her and provide emotional support.

Love,
Fay