Canadians in British Columbia

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  • ilowen
    ilowen Member Posts: 79
    edited April 2021

    Pots, I haven’t progressed yet but I guess I’ll find out soon (scans this week). Sorry if my post was worded poorly.

    Runor, I remember some very important advice that many on this site have given prior to an official diagnosis ... stay away from Dr. Google. You are not a stat, you are a unique individual and your experiences are yours and yours alone. If Dr. Google was all-knowing, I’d likely be on my death-bed right now or in a wheelchair and I’m clearly not.

  • cathy67
    cathy67 Member Posts: 514
    edited April 2021

    Dear ladies, sorry to hear all these, I always pray for our group. I will meet MO this Thursday, then checkup in two months.

  • akmom
    akmom Member Posts: 272
    edited April 2021

    I was curious about how BC health authorities determine who is considered “Clinically Extremely Vulnerable” and therefore eligible for early Covid vaccination. Found this on the govt website

    https://www2.gov.bc.ca/gov/content/covid-19/vaccine/cev

    Cancer

    • You're having systemic therapy for cancer now or you have had it in the past 12 months. This includes chemotherapy, molecular therapy, immunotherapy, monoclonal antibodies, hormonal therapy for cancer
    • You're having radiation therapy for cancer now or in the past 6 months
    • You're having or had targeted cancer treatments that can affect the immune system such as CAR-T cell treatments in the past 6 months
    • You have blood or bone marrow cancer (such as leukemia, lymphoma, myeloma, myelodysplastic disorders)
    • You have had a bone marrow or stem cell transplant in the past 6 months, or are still taking immunosuppressant medicine related to your transplant
  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited April 2021

    Well, first jab under my belt with no issues other than a sore arm for a couple of days. I’ll be interested to see when I get the second dose. There is new studies out of the UK indicating cancer patients (I think primarily those on immunosuppressive treatments) need to have the second dose of Pfizer within the three week window for it to be effective. Apparently we have a much lower immune response than most and efficacy is greatly reduced if the second shot is given more than three weeks out. Awesome. So much for the get out of jail free card!

  • ilowen
    ilowen Member Posts: 79
    edited April 2021

    Well that’s unfortunate to hear, Sadiesservant. There’s so much they’re still learning about this bug and the vaccines. I get my jab on Wednesday. Hoping my SEs won’t be any worse than a sore arm.

  • cathy67
    cathy67 Member Posts: 514
    edited April 2021

    I got my jab 2 days ago, arm sore is okay, but I feel sleepy the two days after that, and I feel hungry frequently. All those are minor, just like a gentle cold. Anyway, it is back to normal, but I can feel still not totally recovered, cause today I don't want that much to run, usually I can run every the other day. I was told they will contact me once second dose is ready.

  • NewDay123
    NewDay123 Member Posts: 71
    edited April 2021

    Runor, you aren't alone. I'm so sorry to hear about your diagnosis. It is so hard. We're here for you. The anxiety is very difficult. Post here as often as you need to. Sending love.

  • NewDay123
    NewDay123 Member Posts: 71
    edited April 2021

    Sometimes it is hard late at night or first thing in the morning.

    I was at one of Marian's get togethers long time ago and really appreciated her doing that for the group.

    Have a good day

  • SaraJay
    SaraJay Member Posts: 77
    edited April 2021

    In lower mainland BC Canada and starting AC chemo on Thursday. Looking for ways to mitigate neuropathy. Any idea of how to access products to ice hands and feet?

  • GG27
    GG27 Member Posts: 2,128
    edited April 2021

    SaraJay, I ordered ice socks from Amazon, I couldn't find any locally. My cancer centre in Nanaimo has ice mittens, I would think that the centre in the lower mainland would have them as well? good luck.


  • moth
    moth Member Posts: 4,800
    edited April 2021

    SaraJay, you don't need to ice for the AC part imo. I ice for taxol & now nab-paclitaxol. I use rectangular icepacks from Superstore, roughly 5x10 cm? for my feet I fold them in half, stick my toes in & then put on top of them giant over size socks (stolen from my husband) just to keep them on.

    for hands, used to do the same & then stick oven mitts over them to keep them on & insulated. That was back when dh or someone else was able to come with me for chemo & they'd jam the mitts on for me & adjust my headphones & hold up my cup to drink. Now that I'm alone & need my hands, I just keep the icepacks folded over & secured with a rubber band & slip my fingers in.

    I bring them all in my own cooler on wheels, packed with hard sided icepacks to keep them cold. I swap out every 20 min or so. Taxol infusions I went through lots as it was a long drip. My nab-pacli is only 30 min. I start icing about 5 min before & keep them on about 5 min after so I only swap once now.

    rubber bands help to keep them in place if you're doing it alone

    I think dh got the icepacks for something like $4 each. It ended up being the cheapest and easiest solution.

    btw, I'm like the only person who ices at Surrey. All the nurses know me now as the crazy lady with the icepacks but I've got the last word as I've lasted a year on taxanes with very minimal neuropathy & it's the major reason people stop treatment with it so I'm just ignoring all the raised eyebrows. They *still* only think icing is for taxotere and for them it's for cosmetic reasons to prevent nail loss/blackening ...

  • wrenn
    wrenn Member Posts: 2,707
    edited April 2021

    BCCA in Vancouver gave me ice mitts for my hands.

  • moth
    moth Member Posts: 4,800
    edited April 2021

    yes surrey has ice mitts for hands too but I thought they weren't as good as mine and they had nothing for feet

  • GG27
    GG27 Member Posts: 2,128
    edited April 2021

    I too am the only "crazy" person who ices at chemo. I lasted 16 cycles on doxirubicin. I iced my mouth as well, the only time I had mouth sores was the time I didn't do it.

  • SaraJay
    SaraJay Member Posts: 77
    edited April 2021

    Moth,

    I'll look into options, ad I have time before Taxol.

    Looks like I'll be on a Thursday schedule for now. When are you there?

  • moth
    moth Member Posts: 4,800
    edited April 2021

    every 3 weeks starting next Thurs Apri 29 :) They usually give me the actual time on Tuesday before so I don't know exactly when

  • SaraJay
    SaraJay Member Posts: 77
    edited April 2021

    There's a chance we could cross paths on May 20 🙂

  • sasamat
    sasamat Member Posts: 53
    edited April 2021

    I imagine most here have gotten (at least one) vaccine, via being clinically extremely vulnerable.

    But if not, or if you are conversing with friends/family who are not CEV and are confused, this summary of the recent NACI guidance re: AstraZeneca (risk vs. benefit) is really interesting and seems pretty sound:

    https://twitter.com/Billius27/status/1387172516175...

    In particular, this helps people figure out whether AZ might be worth it, given the blood clot risk vs. ambient level of COVID in your community and how old you are (meaning, how soon the age-based program will offer you Pfizer or Moderna).

    NACI = National Advisory Committee on Immunization

    Original NACI material: https://www.canada.ca/en/public-health/services/im...

  • Elderberry
    Elderberry Member Posts: 993
    edited April 2021

    moth: am I reading your post correctly? You are going to Surrey for TX? Are you still on a trial that BCCA doesn't "support" ? It is a good thing the bridge is no longer a toll bridge.

  • moth
    moth Member Posts: 4,800
    edited April 2021

    Elderberry - yes, I've had my treatment all along at Surrey, right from Dec 2017. The trial was official - huge international trial and BCCA Surrey was one of the sites - I'm not entirely sure whether we became a site because my Dr wanted us to so she could get me in or whether it had nothing to do with me..... BUT, I ended up being the only Cdn enrolled as the manufacturer closed the trial soon after due to results from a previous trial making them change their mind about the meds they were studying. I still get the immunotherapy directly from the manufacturer now, under compassionate access.

    I don't even remember when the toll ended lol. I had the little sticker thingy and I guess we paid a discounted rate or something? I never cared enough, just put the bills on autopay and never looked at them. The Cancer agency does have a pretty large financial support thingy so I think they would have helped if we needed it. Oh & that specific trial also have financial support - I think they would have covered parking and a meal on the days we came in for treatment. Didn't claim any of that because with covid parking was free & I wasn't going to go to a restaurant lol


  • Elderberry
    Elderberry Member Posts: 993
    edited April 2021

    moth: I still have my little sticker thing. Basically your car was recorded to and from using the bridge and then you were billed. There was a free period and I still seldom had need to cross. It has been awhile since the toll came off. After the last election? Do you feel like a "rarity"?

  • GG27
    GG27 Member Posts: 2,128
    edited May 2021

    hi all,

    Anyone else going on Tomivosertib & Paclitaxol trial at BCCA? Heading to Vancouver tomorrow for my first appts on Monday morning. A bit worried about all the covid cases on the mainland. I scared to get in the elevator at Fairmont Medical but not sure I'm up to 8 flights of stairs . I didn't like how squishy it was in "before times"

  • wrenn
    wrenn Member Posts: 2,707
    edited May 2021

    GG27. They are very careful at the Fairmont and only allow 2 people on the elevator at the same time. Any time I have been there in the last year I have been the only one on the elevator. They aren't as busy these days. My NP's clinic (UBC Family Practice) does phone or video appointments before booking anyone in person and that is only if 'in person is really needed. I haven't been in a while since phone worked for me but I expect it to be the same.

    Hard not to worry but I think you will be ok. Good luck with your treatment.

    ETA that I am not doing the treatment you mentioned.

  • GG27
    GG27 Member Posts: 2,128
    edited May 2021

    thank you Wrenn for this information. I haven't seen my MO since Feb 2020, so I wasn't sure what the protocol would be.

  • wrenn
    wrenn Member Posts: 2,707
    edited May 2021

    I was afraid to go at first too since I remembered it being very squishy or long waits for elevator because they were all full. I used to have to go to the 8th floor too for oncologist but now only to 4.

    So far, the parking lot, the pay station and elevators have been almost empty. They only allow you to go in one direction on level 2 (where the parking lot is) to go in our out.

    These days I still wear 2 masks and a face shield. It is crazy out there. Stay safe.

  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited May 2021

    Anyone else find it frustrating that we never see our oncologist face to face anymore? I don’t mind some phone calls but like you GG, I haven’t “seen” my MO since January 2020. Sometimes I feel the need to look him in the eyes when we are discussing treatments, etc.

    I am not familiar with that treatment. I thought it was primarily for triple negative, isn’t it? So far I have not had the opportunity to take part in any trials. I worry about limited options down the road of course as I am now in the heavily pretreated category.

  • Elderberry
    Elderberry Member Posts: 993
    edited May 2021

    To All; I would love love love to see my MO in person. He is so good about returning my emails, even for stupid things and we talk every other month. But face-to-face is so much better. I think it was late Feb early March 2020 when I last saw him.

    My MO is on the ground floor of Lion's Gate. The elevator from the parking lot is usually empty or has one person in it. The main entrance and other elevators to the upper floors is also on the ground. Currently the oncology department is completely separated from the rest of the hospital. There is a barrier or some form of plastic sheeting blocking off the rest of the floor. I feel about a safe as one can feel.

  • cathy67
    cathy67 Member Posts: 514
    edited May 2021

    I am in richmond, I just saw my MO face to face last month, I was really surprised to see him cause those days the new cases spiked. He even checked my surgery area, this really made feel comfortable.

  • wrenn
    wrenn Member Posts: 2,707
    edited May 2021

    Pandemics are hard in so many ways. It will be so comforting to get back to the way things were but I have a feeling it will be a while. I still feel pretty lucky that we have the technology to do video calls or even phones. I remember crank phones. I guess in the "olden" days they didn't expect much.


  • Elderberry
    Elderberry Member Posts: 993
    edited May 2021

    wrenn: old phones had some satisfactions. Slamming down the phone when you are mad at the person on the other end of the line was much more effective with an old rotary then it is now when you just hit the stop, off and whatever button to cut them off. The "slam" was so gratifying. The pandemic would have been so isolating for so many without emails, Skype etc.

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