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Canadians in British Columbia

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  • elderberry
    elderberry Member Posts: 1,037
    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: 1,308
    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 Shocked. I didn't like how squishy it was in "before times"

  • GG27
    GG27 Member Posts: 1,308
    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.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    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: 1,037
    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: 408
    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.

  • elderberry
    elderberry Member Posts: 1,037
    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.

  • GG27
    GG27 Member Posts: 1,308
    edited May 2021

    I've only seen my MO in person once in the last 20 months. She was on sabbatical, then came back & Covid hit. She didn't want me traveling to Vancouver from the island just to see her. I do have a GPO in Nanaimo but only ever did phone calls with him. So I haven't had a physical check for almost 2 years.

    Sadiesservant, I don't know much about this treatment, my MO called me to tell me she thought I should think about it. I too am now heavily treated. We are doing breaks in treatment when I am stable to prolong the length of a treatment. When I was on weekly doxil, I took 2 months off, it was wonderful.

    I'm a bit nervous about this trial, the last one I was on was Piqray & it was horrible for me. I lasted 10 days. Luckily the trial allowed me to stay on Faslodex as a third arm of the trial. But I've blasted through most of the chemos offered other than weekly doxil which I would have stayed on but MO felt that we were getting pretty iffy on the amount of time I'd been on it, with heart damage being a concern.

    take care all, think good thoughts for me for Monday's CT & meeting with trial RN & MO. cheers, dee

  • moth
    moth Member Posts: 3,293
    edited May 2021

    in your pocket for Monday!

    I was seeing my MO face to.face because the trial required it..but now I'm off trial and she's on 3 month sabattical and her locum is doing telehealth only. It's ok I guess. I see my chemo nurses every 3 weeks for treatment.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited May 2021

    Hi Dee,

    Your comments about your MO’s strategy is helpful on piecing together my own MO’s approach. I mentioned on another thread that I was surprised to hear that my MO wants me to stop Xeloda after six cycles, holding it in reserve since I responded well. I was a bit taken aback as many have been on it for years. In his view, it will only drag me down and he wants to try another endocrine treatment (appears he is leaning towards Aromasin). Sounds like a similar strategy to keep things in check as long as possible while limiting the negative effects. I have to admit that I am a bit relieved that I might not need to stay on Xeloda long term. It’s beating me up a bit more with each subsequent cycle and I am only on #5!

    Wishing you success and minimal side effects with the new treatment.

    Pat

  • SaraJay
    SaraJay Member Posts: 63
    edited May 2021

    hi!


    I've been hearing great things about incorporating acupuncture treatment to help with side effects of chemo and I'd like to give it a go.


    I'm looking for recommendations for someone who has experience with cancer patients.


    Thanks!

  • newday123
    newday123 Member Posts: 35
    edited July 2021

    Hi SaraJay, I don't know any acupuncture people. Might your medical team or the cancer agency have a list of potential people to try?

    Dropping by to say hi to everyone, hope you're all keeping well.

    I'm doing ok, just a bit of brain fog once in awhile. Watching a lot of TV shows/movies. Sometimes feel very tired.

  • acepp
    acepp Member Posts: 1
    edited August 2021

    Hello all!


    I am recovering from my partial mastectomy. Margins and lymph nodes were clear 🎉🎉🎉 But tumor was just over the 2cm (2.1cm) when they took it out not the 1.2cm they saw on the scan. Been labeled 2a (HR+ her2 -).

    So with me being premenopausal, surgeon thinks they are going to recommend chemo. So that's not what I was hoping for at all. But good news about lymph nodes and margins!

    I have friends in the States that have used a cooling cap with great results. They were going to mail me theirs, but I read that BC Cancer won’t allow them!?!?!? What the actual f?

    Anyone know anything about this?

  • cathy67
    cathy67 Member Posts: 408
    edited August 2021

    acepp,

    My biopsy said 8 mm, however it was 2.1 cm with 3 mm node involvement. My surgery said chemo will be recommended, and my oncologist also said, however I insisted on oncotype test which I had to pay myself, it turned out low score which means low risk and no chemo benefit, the oncologist said no chemo.

    Well prepared for chemo, however, investigate the chemo benefit with the oncologist, whether it needs or not, the good thing is that we know what is the right choice.

    Pray for you.


  • moderators
    moderators Posts: 7,656
    edited August 2021

    accept, we're sorry for what you are here, but wanted to say welcome! We're glad you found us, and appreciate your participation. We have a thread specifically about cold caps that you might find helpful, here: Topic: Cold Caps Users Past and Present, to Save Hair

    Also, don't forget to fill out your Profile so others can see your diagnostic and treatment information, which will help them answer your questions. You can fill out your profile by clicking My Profile at the top right of your screen, and following the prompts to enter your information in the My Diagnoses and My Treatment tabs.

    We hope this helps. Looking forward to hearing more from you soon!

    The Mods

  • moth
    moth Member Posts: 3,293
    edited August 2021

    acepp, hi, welcome to the boards, sorry you find yourself here!

    Yeah, no cold caps at BCCancer. I never cared but someone who was dx'd same time as me in 2017/18 did and was told nope. I've heard some reasons are that it's not an easy small system, requires outside equipment/space/ etc and the agency cannot give up the space.I use icepacks for my feet and hands to prevent neuropathy from taxanes and gotta admit that even that, in some of the stations, requires wriggling to get stuff to fit (it's a small cooler on a luggage cart). Some centers are way more crowded than others and I think also, that they need policies that are province wide, so here we are...

    Good news indeed about nodes and margins. Chemo is not so bad. I've been on it continuosly for almost 18 months this time. I even made a reel about it: https://www.instagram.com/p/CR-Jkvtlvjo/

    How is the surgery recovery going?

  • Kentiana
    Kentiana Member Posts: 2
    edited August 2021

    Hi Cathy67,

    I’m new here. Just had a left mastectomy 5 days agai and waiting for my pathology. I’m looking for info on getting the oncotypedx test in Ontario. Is it not standard in Canadian breast cancer treatment?

    Any advice on asking for this? I meet my surgeon on Thursday for my pathology. Or is this something I’ll need to wait for my oncologist for? I haven’t been assigned anyone yet.

    Thank you so much for any direction you can offer.

  • moth
    moth Member Posts: 3,293
    edited August 2021

    Kentiana, are you in Ontario or BC - because you're posting on the BC thread so I'm confused.

    Oncotype is covered by all 10 provinces. There are some eligibility criteria - it's usually limited to lymph node negative. Also in some situations, when the oncologists feel that clnically they'll be recommending chemo anyway, they don't always want to send out for the test because it wouldn't help with decision making in those cases....

    Here in BC, it was my oncologist who ordered the test, not the breast surgeon. hth!

  • cathy67
    cathy67 Member Posts: 408
    edited August 2021

    Kentiana, I sent you a private message. Also, moth has provided very useful info.

  • GG27
    GG27 Member Posts: 1,308
    edited September 2021

    I have a question for those who are getting chemo at BCCA in Vancouver. Are you having problems getting your appt times ahead?

    I have repeatedly asked to please get my chemo appts times ahead of time. I travel from Vancouver Island & need to make travel & accommodation arrangements. They used to call me on Thursday for Tuesday appts, now I can't even get them to answer the phone. They seem to feel that calling me on Monday afternoon is more than enough time for me to make ferry reservations and find a reasonably priced hotel room.

    I am so frustrated, it feels hardly worth doing this trial when I could just have chemo in Nanaimo & not bother with the trial drug.

  • Dawgmum
    Dawgmum Member Posts: 3
    edited December 2021

    Hi everyone, I’m on Vancouver Island and had surgery December 10th. I just got my results on line today and am still trying to decipher them. A friend of mine who had breast cancer told me about this group. From what I can tell the margins are clear but it is in the sentinel node 😢

  • cathy67
    cathy67 Member Posts: 408
    edited December 2021

    Dawgmum,

    Sorry to hear that you had to face this during Christmas, we all went through this, and this site is always there to help.

    I just wonder if you already got appointment with oncologist, usually we got news from doctor. I know sometimes post surgery pathological report is worse than biopsy one, like me, it is harder to face, however treatment is more successful nowadays.



  • Dawgmum
    Dawgmum Member Posts: 3
    edited December 2021

    I don’t have an appointment with an encologist yet and am not booked for a follow up with my surgeon until January 4th as he is on holidays. I just kept checking My Health for the results and they were just posted. I had entered what I could but didn’t have it set to public lol….I think I figured it out now. I feel like Covid and the holidays are why I haven’t even had a call from my family doctor yet. 

  • cathy67
    cathy67 Member Posts: 408
    edited December 2021

    Dawgmum,

    Since you figured out what the surgery pathology report explains, this site provides very rich info, you shall be well ready to discuss with the oncologist about the further treatments. I hope this covid 4th wave will be flattened soon, so you can go to hospital safely.

    One thing, we as patients already got chance to get booster shot in October, I don't know if you already got it, if not, now you are in the fast track queue, you'd better do it before your frequent hospital visits.

  • Dawgmum
    Dawgmum Member Posts: 3
    edited December 2021

    Thank you for the reply cathy67. I’ve only had my second shot but I’ll ask about a booster as soon as I talk to my doctor. 

  • cathy67
    cathy67 Member Posts: 408
    edited December 2021

    Dawgmum,

    The vaccine invitation is being handled by cancer clinic as a group, I think, if you have appointment which means you are already their patient, the front desk may arrange this for you, then it will be quicker.

    Best wishes!


  • moth
    moth Member Posts: 3,293
    edited December 2021

    HI Dawgmum, sorry you're going us here. It is a great resource though... so ime after the pathology comes in, then they send the referral to the bc cancer agency & you'll be called to make an appointment with an oncologist. Fwiw, my pcp took a step back and is not involved in my cancer stuff at all. She has been great for everything else, supportive care etc and she reads all my cancer agency updates etc but once it was confirmed as malignant, cancer agency took over all that.

    When you see the oncologist they'll go over the results and the treatment plan. But first they may want to do the Oncotype test to determine the benefit of chemo based on the tumor characteristics. In that case, things will be delayed and they'll need to send a sample to the US and wait for results.

    Hang in there, once the treatment plan is in place, most people feel a lot better.

  • cathy67
    cathy67 Member Posts: 408
    edited December 2021

    moth,


    Thanks a lot, I still remembered when I first came here, your warm messages made me relax a lot. I am reading the posts on your personal website, and pray for you all the time.

    Happy New Year!

  • moth
    moth Member Posts: 3,293
    edited December 2021

    hi cathy! Thank you, love. Happy New Year to you too!!!

  • runor
    runor Member Posts: 1,612
    edited December 2021

    Dawgmom,  happy you found this site but sorry that you needed to.  I second what Moth said. Once you are a cancer patient you become part of a well oiled machine and no decisions are left up to  your regular doc. It can feel a bit like you are sucked into a vortex. In this moment you may be stunned and confused and feeling like the bombs are flying in from all sides. But some of the best treatment I got was for cancer - that cancer clinic had it's act together! So you will be in good hands.  Sort of sad now that it's covid time there might not be the great legions of volunteers there used to be at the cancer clinic. Those volunteer ladies were angels! If you were standing in the clinic looking lost, one or more would swoop in to find where you needed to be and shepherd you there, often with tea and a cookie too. I hope we get to where they can be there again guiding the scared and lost. Or perhaps they never left, I don't know for sure.

    Good luck to you and fingers crossed that everything goes smoothly.