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  • moth
    moth Member Posts: 3,293
    edited December 2017

    Thanks Pat & wrenn. I'm actually kind of ok right now but I was just a bit taken aback because it wasn't what I expected it would be like...

    wrenn, I saw the mindfulness course but not sure I should do it as I've been practicing mindfulness meditation on & off for years. Is it more for beginners or do you think experienced meditators should also take it?

    Callanish does sound amazing but definitely not a commute I want to do. I've bookmarked it in case I want to think about a retreat though.

    I'm just compensating for anxiety by trying to map out and overplan things. Learning to surrender to process has been a lifelong challenge lol; I expect there will be lots of opportunities for practice now. I was in counselling for quite a while before and I already know I'll go back - just not sure where as my old counsellor is herself on medical leave. We have extended health so that makes things a bit easier & I'm tempted to arrange something myself in addition to whatever the agency also offers through their center.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited December 2017

    Moth, not sure which center you will be at. Thinking you said Coquitlam so not sure if you go to Surrey or what? I was in Vancouver. The course Wrenn refers to is MBSR which stands for Mindfulness Based Stress Reduction and not sure any centers but Vancouver offer it. I too had done other practices but this one was right for so many of us I can't tell you. Attrition almost zero and some of us still go back for short evening refreshers. The woman who started at BCCA Vancouver just retired after 18 or so years of facilitating. Another social worker who is on mat leave should be taking it over. Jon Kabbatt-Zinn began it back in 1979 and nothing to do with cancer. One summer when I was depressed, my BCCA psychiatrist (yes, they are also there) suggested I do a one to one Mindfulness Cognitive course with a senior resident and that too was helpful.


    Earlier on I asked to see a counsellor and that did not work out personality wise thus the other referral later on. Also InspireHealth in Vancouver is now free for cancer patients. They used to charge about $500 but got a grant and fundraiser. I found it here too and just started utilizing it.

    I never talked to anyone at the agency before seeing my oncologist so that was probably about 2.5 months after diagnosis and 4 or 5 weeks after lumpectomy. My experiences once then are excellent. I am now at the agency in Victoria and again, I feel well taken care of.

    It is so early on for you that it is tough to wait and see. I have always felt the "waiting game" is the worst.

    At the top of my dx etc. on this site~~at the bottom of my posts, there is a link to my blog which I started with the help of my daughter in the fall of my diagnosis. Not sure it is at all useful but it does describe those early days when it was so overwhelming. I have just started posting again.

    Marian

  • moth
    moth Member Posts: 3,293
    edited December 2017

    I'm referred to the Fraser Valley one in Surrey. I'm glad because it's a pretty easy commute for me but from their website tbeir program seems leaner than what's in Vancouver. Could just be a population density issue I guess.....

    Ok thx ladies for the info & links & support.

    At this point I'm just going to practice waiting :) (& ignoring the annoying relatives & the stupid things they say.... )

  • runor
    runor Member Posts: 1,615
    edited December 2017

    Moth, there is a forum for the stupid things people say. It can be truly mind boggling at times. Check it out to discover that your family and friends are not alone in the crazy things that come out of their mouths.

  • moth
    moth Member Posts: 3,293
    edited December 2017

    hey guys - my gp called to say she got my pathology report and wanted to let me know right away the margins were good & the sentinel node biopsy was negative. Love my gp because otherwise I'd have been waiting till Jan to see the surgeon to get these results but she just picks up the phone & calls.

    Still waiting on the oncotype score and rad + chemo v. rad alone recommendations.

    I'm wondering if any of you used medicinal marijuana during treatment and how that was received by your oncology teams? If we go to chemo, I'd definitely want to explore that as I'm Miss Barfy. I make myself car sick in my own car, while driving... I really want every anti nausea thing possible.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited December 2017

    Ha! I haven't used Mary Jane but generally don't have too much trouble with nausea typically. They will likely give you Zofran which is their standard anti-nausea med depending on the treatment they give you. But be forewarned... it causes MAJOR constipation. I ended up with thrombosed hemorrhoids from that drug. I had six cycles of CEF and by the second cycle I learned to have an arsenal ready pre and post treatment. Laculose (not sure if this is the correct spelling but it's a god awful sickly sweet liquid that helps keep things moving) a couple of days before chemo and a couple of days after. Lots of apricots, prunes... you get the picture... and still I had to strain. White knuckle experiences let me tell you!

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited December 2017

    Moth, going back to where your treatment center is and the MBSR course~~it is not recommended for anyone in active treatment so it is something you might consider for later on if you would be willing to come into the Vancouver center.

    So happy you got the path report before Christmas~~having a good GP is wonderful.

    As for medical marijuana, back 5 years ago there were not so many pot shops around so I went through the referral from my MO for the Compassion Society. I wanted edibles as I had lost a fair bit of weight along with everything else. I had no problem with the referral process. Of course now it is much more accessible. This time I really am going to use it as medicinal marijuana as an adjunct to my pain meds used for nerve pain and damage. CBD's are what I am after and have found a very professional shop plus the Victoria Compassion Society. Yesterday my pain doctor at BCCA brought up CBD's. Of course it is illegal and as always the fact that as yet there are no qualitative and quantitative studies to speak of comes up. But~~my doctor is for it from what they do know. I have a 4:1 tincture to try as it seems that some THC is recommended specifically for my issues.

    I did not have the same S/E as Sadie and we all have such different reactions. Breast cancer has taught me much and the fact that each one of us is so individual stands out as one of the most important things to consider and remember as you go down this path. I did have a lot of diarrhea which is not always normal.

    Keep us posted after the NY and enjoy as best you can these holidays. The sun is out here on the island and two of our 3 kids are here for a few days.

    Merry Christmas to everyone!

    Love Marian

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited December 2017

    AMH51, welcome and I think there are several women out your way. Where are you receiving your chemo? I saw your dd comment and am wondering if you mean every two weeks with neupogen to keep your WBC's up? I managed to get through AC dose dense but was hospitalized just before taxol as my WBC's tanked as did my hemoglobin and I got 2 units of platelets which did the trick and no problems with Taxol really.

    Looking at your pathology it seems your that you are Stage IIIA but probably more due to the size of your tumour rather than nodes as was my case. Did you have a lumpectomy and axillary dissection or did your breast surgeon take 15 nodes because she saw something?

    There have been more posts of late which is nice to see.

    Marian

  • Ossa
    Ossa Member Posts: 685
    edited January 2018

    hi all been a long time. Welcome to the newbies. Sorry you have to be here but glad you found this site. These ladies kept me sane when I was going through treatment. Hope you are all doing well Marian your place looks amazing I bet you are enjoying that view every day. Wishing you all a healthy new year.


    I am finally having my re-reconstruction. New surgeon new procedure. I am having a lattimus flap Feb 22. Then going to Mexico with my son and his family in April. Hubby is not coming along this time as he will be starting a big project an can’t get away. The two of us are going to Norway in July for a few weeks. As we will be celebrating our 40th anniversary and my brothers 70th birthday Look forward to going

  • Fembot
    Fembot Member Posts: 59
    edited January 2018

    Hi everyone,

    This is my 1st post. I've just been DX w/ DCIS in 1 breast, just short of my 47th birthday. I'm thankful for this site and your contributions to it. So much fear and anxiety.

    I've met with my general surgeon. Meeting with plastic surgeon in a few days to talk reconstruction. I've decided on nipple-sparing BMX with immediate implant reconstruction. Hopefully that's possible.

    Thanks for being there, and I wish you all the very best.


  • moth
    moth Member Posts: 3,293
    edited January 2018

    Hi Fembot. Welcome to the suckiest of clubs but at least we have each other.

    I'm still in a holding pattern. BS follow up on Jan 9. Finally got the referral to the cancer center for Jan 24 so I guess that will be the day I find out / decide re chemo.

  • adin
    adin Member Posts: 3
    edited January 2018

    Hello, please has anyone experienced moving while dealing with treatments? Can you recommend me where to start and how to smoothly transfer all my appointments while we are relocating from BC to AB, Edmonton? Is there any institution to help to answer medical coverage questions. Thank you ever so much

  • Fembot
    Fembot Member Posts: 59
    edited January 2018

    Hello adin,

    I'm sorry you have to move during a stressful time. Vancouver Health Authority (VHA) has some useful links and phone numbers at this page breastreconstruction.vch.ca/information

    Also in many hospitals and cancer centers, a social worker may be available to help you help with non-medical challenges such as navigating the health care system and accessing support resources (financial assistance, home care, etc.)

    This page may be helpful too: support.cbcf.org/get-support/national-regional-resources




  • adin
    adin Member Posts: 3
    edited January 2018

    Thank you Fembot so much.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited January 2018

    So good to see everyone helping each other on our BC/BC thread! As Ossa and Wrenn and others know, it has always been helpful for us. I hosted 3 brunches in Vancouver but missed last year due to our move to Victoria. If I can "borrow" a house from friends in Vancouver this spring I will host another~~they were so good for all of us to make contacts.

    Marian

    At the bottom of my posts, there is a link for my blog. Not promoting it at all but I find writing from the very start has been good~~I look back and see how far I have come. I almost used progressed but sometimes normal words can be poor choices

  • Fembot
    Fembot Member Posts: 59
    edited January 2018

    Hi Marianelizabeth,

    You've been through the wringer. Have you completed your treatments, or must you continue for longer?

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited January 2018

    I am a forever on treatments but no worries~~I am loving and living life

  • Vilma65
    Vilma65 Member Posts: 69
    edited January 2018

    Hi all, I just have been diagnosed with bone mets, my doctor wanted to put me on Ibrance but my extended doesn't cover it, we are going to appeal it. Does anyone had experience with it? will appreciate any input also in regards to alternative medication

  • Ashlyn
    Ashlyn Member Posts: 93
    edited January 2018

    hi Vilma

    Who is your provider? I was able to get coverage with GWL after my MO filled out the forms and contacted Pfizer for partial pay. Pfizer picks up a portion that GWL won't pay through their compassionate assistance program. This was back in July for me that I was able to access it.

    There is also a trial for a similar drug called Ribociclib (Kisqali) that you could ask your MO about getting into if you don't get Ibrance covered. This was the drug I would have been put on if I didn't get Ibrance covered.

    Best of luck.

    Ash

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited January 2018

    Vilma I am on Ibrance and was lucky our insurance covers mine. I am not sure what GWL stands for in Ashlyn's post but from what I know about the Ibrance process is that Pfizer wants people on Ibrance and there seem to be a number of ways to that you can get coverage. Did you have a three way conversation with Pfizer and your insurance company?

    I would not have wanted to be on a trial that is 50/50 (Ibrance/placebo) at this point. What does your oncologist say? I am crossing fingers for you. If you have no luck (or even so) I am on a Facebook group for Canadians with metastatic cancer. Let me know if you want an invite.

    Ashlyn, how many cycles have you been on? I start cycle 6 tomorrow night.

    Much as I hate to say this, I am grateful that there are some of us on this BC/BC thread that are in this mets boat together.

    Marian

  • Ashlyn
    Ashlyn Member Posts: 93
    edited January 2018

    GWL: Great West Life - Pfizer did all the organizing for me once my oncologist filled out the paperwork. I hope you find a way Vilma! In the meantime, will you start Letrozole

    Marian: I was under the impression that Ribo was into PHASE II trials. Does that not mean that you're guaranteed the drug?

    I'm in the middle of cycle 3 right now. How are you doing on Ibrance Marian? I have yet to scan since I started. End of this month. Nervous.

    I've been mostly hanging out over on the Ibrance board since I started in October. Managing but chronic low counts and lately GI issues giving me grief. I've been getting Grastofil (like neupogen) to get me through.



  • Vilma65
    Vilma65 Member Posts: 69
    edited January 2018

    Hi Ashlyn and Maryelizabeth, Pfizer rep said that they will help me to appeal, I haven't had the change to talk with my MO yet about what are her thoughts due to the weekend, just received the info on Friday, so looking forward to Monday to see if I can start moving things along

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited January 2018

    Ashlyn, I don't know anything about Ribo trials or phases so you are ahead of me on that. I only know that I don't want to on any trials. If I had wanted Faslodex free for instance, I could have got it from Victoria BCCA but I am lucky that my insurance pays for both my Ibrance and Faslodex.

    Vilma, keep us posted and I suspect all will go well.

    Marian

  • Vilma65
    Vilma65 Member Posts: 69
    edited January 2018

    Thanks, I hope so. I'm getting a bit discouraged since I just was told that the extended won't cover the denosumab either. I did get a call from the victory program and they offered to cover up to 50%, but that will still mean 300$ from my pocket each month that I'm reluctant to spend since I will provably have to reduce my work and I'm a single mom living in very expensive Vancouver

  • mandytam87
    mandytam87 Member Posts: 2
    edited January 2018

    Hi lovelies!

    My mother is a 3-time breast cancer survivor and her lymphedema (swelling of the arm) has gotten a lot worse the last year (it will swell up instantly by bending down to tie her shoelace). Has anyone had any success in completing the LVA surgery (lymph node transfer surgery) in Canada or Asia?

  • Ashlyn
    Ashlyn Member Posts: 93
    edited January 2018

    Vilma: from Rethink Breast Cancer's Facebook today...

    "IBRANCE ANNOUNCEMENT📢📣

    Yesterday we received the news that Ibrance is one step closer to being publicly funded in Canada. The negotiations at PCPA were completed and we are waiting for provinces to sign the letter of intent to fund the drug!"

    Hope this means you and everyone else who has been waiting will get it fast!

  • Vilma65
    Vilma65 Member Posts: 69
    edited January 2018

    Wow, thanks that is great news!!

  • Fembot
    Fembot Member Posts: 59
    edited January 2018

    Hi mandytam87,

    I didn't know LVA (lymph node transfer) was possible. That's good to know. You might try doing a search on this site using the search term LVA to see if anyone's talked about it.

    Is your mom getting help for the lymphedema from a physical therapist?

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited January 2018

    There has been much discussion about Ibrance this past week due to a brave woman who got it "public." Dr. Moore at BCCA spoke on a radio (I think) program and it is still in review and at the end he did say 2-3 months possibly.

  • Raeleanne76
    Raeleanne76 Member Posts: 5
    edited January 2018

    My name is Deana and I am 41. I live in New Westminster but work downtown Vancouver. Had my first ever screening mammogram on December 19, a call back for a diagnostic mammogram on Jan 4 (which didn't surprise me, had been told previously that I have lumpy breasts). GP called me the next day to advise I need biopsy on a 3mmx5mmx7mm "spot". I was so shocked I didn't ask any of the questions I should have so I don't know the birads or anything. Met with a surgeon 3 days later and had a core needle biopsy a week after that. The surgeon said they would "get that thing" out of me but needed the biopsy to determine staging and to determine if they are taking out lymph.

    Now I am sitting here waiting for the pathology report which I am supposed to hear about by Wednesday. (biopsy was at Burnaby hospital).

    I am not sure what questions I should be asking. I am wondering if anyone has advice on what to expect etc. I guess.

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