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Viewing 13 posts - 31 through 43 (of 43 total)
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  • in reply to: Magic mushrooms? #94511
    Fay
    Participant

    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

    in reply to: lasix causes Hyponatremia #94526
    Fay
    Participant

    Hi,

    There are 3 types of hyponatremia and they are hypovolemic hyponatremia, euvolemic hyponatremia or hypervolemic hyponatremia. The clinical scenario you describe fits the hypervolemic (i.e. Volume overload) category. And yes lasix can cause electrolyte abnormalities however in this case, it is the underlieing hepatic pathology that would seem to be the more likely culprit. Agree with Marion that it would be best to have the patient seen and examined in person by a physician.

    Best wishes,
    Fay

    in reply to: Magic mushrooms? #94515
    Fay
    Participant

    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

    in reply to: It must be March… Bad news #94197
    Fay
    Participant

    Hi Kris,

    Fed Hutch in Seattle is heavily involved in cancer reasearch. My mom lives in Canada but I took her across the boarder for a second opinion to see Dr. William Harris at Seattle cancer care alliance. He was excellent. If you do decide to consult there, you can stay at my place. I live five minutes away from SCCA and work in the ER so am not home very often.

    Stay strong and think positive. Today may suck but tomorrow is a new day. A much better day.

    Love,
    Fay

    in reply to: Two types of CC? #94491
    Fay
    Participant

    Thank you Lainey,

    You are an angel and Teddy was lucky to have you care for him so lovingly.

    I heard on the news today that a family donated $35 million to Fred Hutch in Seattle for cancer research. That made me happy and I pray a nice portion of that goes towards funding research for CC treatment.

    Fay
    Xo

    in reply to: Two types of CC? #94493
    Fay
    Participant

    Thank you so much. May I ask what supplements? Should we also consult with a naturopathic doctor? In addition to her medical oncologist of course.

    Fay
    Xo

    in reply to: Two types of CC? #94489
    Fay
    Participant

    Hi crfisher…am very new to this site but my mom has papillary mucinous cc and it is a slow growing tumor. And yes from what I know, they are more rare, have better prognosis (if caught early), but are less responsive to chemo b/c chemo is designed to kill more rapidly growing tumor cells (which is why chemo also affects hair, blood counts, gastrointestinal track, etc.).

    We requested for microsatellite instability testing of the tumor, as well as molecular profiling. Still waiting for the results. This has been our experience so far. I am not an expert by any means and am stlll learning.

    in reply to: Mucinous CC #94225
    Fay
    Participant

    Hi Marion,

    She had her surgery at Vancouver General Hospital (excellent surgeon). And she is a patient at BC Cancer Agency (where I am unhappy with the person overseeing her care). We will likely either have to find someone else there, or, go to a private oncologist in Vancouver, BC.

    Fay
    xo

    in reply to: Mucinous CC #94223
    Fay
    Participant

    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

    in reply to: Mucinous CC #94219
    Fay
    Participant

    Thank you. We had another appointment with him. He is so set on the lack of evidence that I think he just wants to ‘monitor’ my mom. Meanwhile she has stage 3 cancer. I feel overwhelmed by him and am asking around to get another opinion from someone who will work with us.

    Fay

    in reply to: Mucinous CC #94217
    Fay
    Participant

    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

    in reply to: Mucinous CC #94213
    Fay
    Participant

    Hi Marion,

    I don’t believe the surgeon was aware of lymph node involvement prior to taking her to the OR. And the boarders being positive was a microscopic finding and I’m guessing not visually apparent during surgery. Unfortunately she was an overnight case so a pathologist was not available during the procedure to assist in determining how much tissue needed to be removed.
    Additionally her pancreas was still quite inflamed which made surgery more challenging.

    The pain, I believe is likely secondary to the perineural invasion as well as possible ongoing pancreatitis (she developed acute pancreatitis post ERCP) as well the surgery itself. The CTs will clarify this for us hopefully. The pain is steady and constant but there as an element of gastroparesis post ingestion as well. She has metoclopromide but that does not help much. I will tap her in with the pain service because the pain is her biggest cause of unhappiness at the moment.

    And yes I have requested for molecular profiling to be conducted. As for the constipation, I put her on docusate 200mg BID and senna 2 tabs QAM and it is helping with her BMs. If I have to add something else, I was thinking about miralax. Thank you for being so kind and supportive.

    Love,
    Fay

    in reply to: Mucinous CC #94212
    Fay
    Participant

    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

Viewing 13 posts - 31 through 43 (of 43 total)