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Viewing 15 posts - 16 through 30 (of 43 total)
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  • in reply to: CA 19-9 #95345
    Fay
    Participant

    Kris,

    I think it is safest to look at the entire clinical picture (as in all signs and symptoms) and not to get too hung up on the number. My mother’s CA 19-9 was around 130 at the time of diagnosis and within normal range (around 20 to 25 for her) post resection. Despite extensive disease recurrence which was finally detected on CT five months post resection, her CA 19-9 were still in the 20 – 25 range. I’m disheartened to say that my sister and I fought hard to convince the oncologist not to get too hung up on that number, as well as other providers, because her symptoms were very progressive in nature post resection. So I think the most important thing is to look at the entire constellation of signs (including CA 19-9) and symptoms. I should also mention that my mom has the rarest form of cholangiocarcinoma from what we have been told – papillary mucinous subtype and I’m not sure if perhaps this changes things. But this has been our experience thus far.

    God bless and hugs to all,
    Fay

    in reply to: Latest Report on Chemo Treatment Xeloda #95009
    Fay
    Participant

    Dear CC Family,

    Thank you for all your comments. I emailed the physician yesterday and asked her to be a bit more mindful of her choice of words, and the patient’s overall illness experience. I was upset because I know my mom has finally turned a corner so to have someone take hope away from her like that, was really upsetting.

    We’ve been working on getting her mood up again for the last 24 hours. I don’t want those unnecessary comments to take away my mom’s happiness and joy…….if anyone has any questions about my mom’s capecitabine and radiation treatment, please ask us. We want to help you or your loved ones by sharing our experiences with you.

    Sending much love to all of you,
    Fay
    Xo

    in reply to: Latest Report on Chemo Treatment Xeloda #95005
    Fay
    Participant

    Dear CC family,

    First of all, I am sorry I have been away for a while but things have been busy with my mom. She just finished a five week course of capecitabine (aka xeloda) with concurrent radiation. Capecitabine is a prodrug of fluorouracil. She was on this regimen five days a week and had the weekends off. She tends to be quite side effect prone but tolerated the regimen very well. Yes she did moisture her hands, feet and abdominal area twice a day. The capecitabine is meant to sensitive the cancer cells to the effects of radiation. So it’s really a synergistic effect. She went from requiring long acting pain meds plus break through every one to two hours, to not requiring any break through at all since the end of June. Her last day of treatment was on July 12th. It has been amazing. We are now titrating down her long acting oxycodone. She feels great.

    Everything was going well until one of her providers was kind enough to destroy her mood with negative talk….basically telling her not to get too excited because it will come back and she may be gone in a year….upsetting and hurtful to say the least. Talk about destroying and taking away whatever hope a patient has. So unnecessary and disheartening.

    If you have any questions about the drug itself, please let me know. I have a lot of PharmD friends that work at the cancer agency in Seattle and I am happy to pass on your questions. I have missed you so much.

    I love you all,
    Fay
    P.S. Dose of capecitabine is lower for this indication, when used concurrently with radiation. That is why it is tolerated better.

    in reply to: Methadone #95104
    Fay
    Participant

    Hi Karen and Marion,

    I cannot view the guidelines unfortunately. She takes long acting oxy q8h with oxy 20mg IR q2-4h Prn. She also takes gabapentin q8h. I’m not really sure why they are pushing for methadone other than her oxy IR requirements have doubled but the logical reason for this would be disease progression resulting in higher requirements and possible tolerance. Her CT scan has shown disease recurrence. I asked for them to adjust her long acting oxy instead but they wanted to switch to methadone and steroids. I’m not doing that since she is started treatment soon and the side effect profile for methadone (specially QT prolongation in setting of poor PO intake and electrolyte imbalance and antiemetic use) is concerning. And the 21 day course of steroids would be more useful during her radiation treatment.

    Her current pain meds bring her to a 6-7/10 however this is also because she is hesitant to take her break through as needed bc of fear of ‘addiction’. This is despite us telling her repeatedly that she has more than a valid reason for pain medication. When she takes them as needed, she is around 3 to 4 or 4 to 5. She has not tried the fentanyl patch and they didn’t seem keen on trying that when I asked about it in the past. I’m at a loss bc they are pushing for methadone and we haven’t exhausted the other options yet. Her pain, I believe is more visceral and neuropathic in nature. Do you think we should consider adding on the fentanyl patch to her long acting oxy regimen. And keep her breakthrough of course.

    Regards,
    Fay

    in reply to: Prognosis #95092
    Fay
    Participant

    Hi Emmam,

    I’m sorry that this is happening to your mother. Please do not settle on one surgical opinion. Seek a second, third, fourth one if you have to. Experienced hands are key especially since this is a rare cancer. My mom had a resection at age 72 and she is a type II diabetic as well (in addition to hypertension and hypercholesteremia). Yes the surgery is massive and recovery time can be long, but your mother deserves a formal surgical consult. Don’t let them brush her off. My mother was mismanaged from the start and this is not a very forgiving disease. Please ensure you get more than one opinion from very experienced surgeons.

    Hugs,
    Fay

    in reply to: Latest Report on Chemo Treatment Xeloda #95000
    Fay
    Participant

    Dear positivity,

    My mom has a recurrence (less than six months post resection) and its extensive. The medical and radiation oncologists are planning a five week course of capecitabine and radiation, five days a week. She will start soon. I hope we have a positive outcome. Just sharing our story with you.

    Hugs,
    Fay
    P.S. I’m currently also reading about hyperthermia treatment which is typically done at a naturopathic clinic. Apparently it increases the efficacy of chemo and radiation when it’s done concurrently with conventional treatment. But regardless, I will still ask our oncologists for their opinion/input. Does anyone have any experience with hyperthermia treatment?

    in reply to: Disease recurrence #94993
    Fay
    Participant

    Thank you everyone. You are all amazing. Yes my mother is Vancouver, BC and I live in Seattle (but I am always in Vancouver whenever I am not scheduled to work). She is a patient at BC Cancer Agency. Thank you Karen, for suggesting Bastyr. I will look into it. I will also look into getting a few opinions from oncology naturopaths in Vancouver. I just have to dig a bit to find who is reputable etc. I feel so rushed because time is not exactly on our side from the way it seems.

    Thank you all for being so kind and supportive. I would be lost without it.

    Hugs,
    Fay

    in reply to: Eight Years and still fighting #94612
    Fay
    Participant

    John,

    You are such an inspiration. I was sitting and balling over my mother’s disease recurrence and then decided to check in with my CC family. Your story made me cry even harder!!!…but happy tears this time. You have given me some hope. God bless and please let us know how you are doing;)

    Hugs,
    Fay

    in reply to: Low white blood counts and platelets #94869
    Fay
    Participant

    Dear Hopeseeker,

    I would be hesitant to use vitamin E since it has blood thinning properties and with such a low platelet count (16), her baseline bleeding risk is already high. You may want to ask her oncologist for his or her opinion on this matter as well.

    Hugs,
    Fay

    in reply to: TO MY CHOLANGIO CARCINOMA FAMILY #94749
    Fay
    Participant

    Lainey,

    I haven’t been on this site for very long, but I appreciate you always taking the time to post positive and helpful feedback. We all love and adore you;) I wish you the absolute best but selfishly want you to please change your mind;)

    Fay
    Xoxoxo

    in reply to: Conferences #94540
    Fay
    Participant

    Thank you!!! I am super pumped to advocate, and participate, and support the cause however way I can. I will look into some of the conferences. The only thing that will stop me from being there is if I have to be with my mom in Vancouver, or if I can’t get time away from work. But I plan to support, inperson, online, fundraise, whatever it takes.

    Hugs,
    Fay

    in reply to: Pain management advice #94599
    Fay
    Participant

    Marions,

    I forgot to mention we did have an admission recently (this was before we saw the pain specialist at the cancer agency this past week) and despite being there for 16 days, the pain team at the hospital was not able to fully treat her pain with an effective regimen. I think part of the issue during that admission was they were switching drugs around too frequently without allowing enough time for the drugs to achieve therapeutic concentrations before jumping to something else. And they scanned her multiple times but didn’t have anything new to share with us.

    Hugs,
    Fay

    in reply to: Pain management advice #94598
    Fay
    Participant

    Dear CC Family,

    I got glassy eyed just reading all of your postings. Thank you so much for caring, and taking the time to post your messages regarding my mom’s pain issues. I’m sorry for not responding in a more timely manner but I live in Seattle but was visiting my mom in Vancouver.
    We did see a pain specialist this past week at the cancer agency who seemed keen on starting my mother on methadone – I was not keen on that seeing as how there are several other steps that we could try before going to methadone. Then the pain specialist suggested enrolling her in a lidocaine 10mg/kg SC (over 5 hours) trial and I am not keen on that either for the same reasons. Additionally, my concern is if she experienced side effects with the lidocaine trial that would delay further adjuvant therapy for the cancer itself. Maybe we will eventually get to having to resort to this, but we are not there yet.

    NSAIDs are not an option since she is on full dose dalteparin for her bilateral PEs so bleeding risk is a concern if we added that. Her gabapentin is titrated to 300mg three times a day. And after going back and forth discussing various options with the pain provider, we decided to keep her on her long acting hydromorphone, but switch her short acting hydromorphone to oxycodone 10-20mg every 3-4 hours as needed. And I’m thrilled to say it seems to be working (at least for now), bringing her pain scale down to 0-3, for up to 6 hours, which is amazing for her. She even went out with her friends the other day which made me really happy since she is a social butterfly at baseline.

    I will keep you all posted. The one thing I am realizing is that this is as you have mentioned before, trial and error. What may work for one person, may fail for the next.

    I love my CC family.

    Hugs,
    Fay

    in reply to: Conferences #94535
    Fay
    Participant

    Thank you so much Gavin!

    Hugs,
    Fay

    in reply to: Magic mushrooms? #94519
    Fay
    Participant

    Hi Darla,

    Thank you for your input. Her provider has changed her pain meds several times over the course of the last several months, and she felt the same despite all the switches. We will see what the pain and symptom management team say next week, in addition to her upcoming tumor marker testing as well as CT scans in May. The location of her pain is very concerning.

    Hugs,
    Fay

Viewing 15 posts - 16 through 30 (of 43 total)