Jan 8, 2018 10:52PM Fembot wrote:
You've been through the wringer. Have you completed your treatments, or must you continue for longer?
Canadian health care, clinical trials, and life in general in the north.
Posted on: Dec 19, 2011 06:17AM
I'm wondering how many West Coast Gals we currently have on here. It makes it a little easier to compare notes as our health-care is provincial. Would be nice to share tips and such to each other as we wade though the health-care Bureaucracy.
I'm in Richmond BC (a part of the Vancouver Lower Mainland) and the majority of my treatment has been at Vancouver General Hospital and Vancouver Cancer Agency.. with a few small surgical procedures done at UBC and my original Lumpectomy at Richmond General. My GP is also in Richmond. Ive been on the BCO boards since 2007 with a few breaks.
Please pipe in even if only to let us know your here
Posts 2011 - 2040 (2,273 total)
Jan 8, 2018 10:52PM Fembot wrote:
You've been through the wringer. Have you completed your treatments, or must you continue for longer?
Jan 9, 2018 12:27AM marianelizabeth wrote:
I am a forever on treatments but no worries~~I am loving and living life
Jan 12, 2018 02:31PM Vilma65 wrote:
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
Jan 12, 2018 04:45PM - edited Jan 12, 2018 04:45PM by Ashlyn
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.
Jan 12, 2018 09:39PM marianelizabeth wrote:
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.
Jan 12, 2018 11:06PM - edited Jan 12, 2018 11:12PM by Ashlyn
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.
Jan 13, 2018 01:49PM Vilma65 wrote:
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
Jan 13, 2018 09:16PM marianelizabeth wrote:
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.
Jan 14, 2018 12:56PM Vilma65 wrote:
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
Jan 14, 2018 10:31PM mandytam87 wrote:
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?
Jan 16, 2018 03:02PM Ashlyn wrote:
Vilma: from Rethink Breast Cancer's Facebook today...
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!
Jan 21, 2018 07:05PM Fembot wrote:
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?
Jan 21, 2018 10:58PM marianelizabeth wrote:
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.
Jan 22, 2018 05:34PM Raeleanne76 wrote:
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.
Jan 22, 2018 05:50PM Raeleanne76 wrote:
Oddly enough just received a call from the surgeon's office. They have scheduled my appointment for 2 weeks from now, Feb 2. That feels like a long time to wait for the answers! But it also seems to me that if it was BC that they would get me in to be seen sooner???? Anyone have experience with that?
Jan 22, 2018 06:08PM moth wrote:
Reaelanne, how is your relationship with your GP? The GP will have copies of the results already as well so you could get them there if they have fast appointments. I didn't see the surgeon until after the core biopsy but even my post op pathology results (about margins etc) my GP communicated those to me asap. In fact, she called me right away to tell me the margins were clear etc so I would know as soon as possible.
I'm near you btw, near Lougheed Mall :)
Jan 22, 2018 08:06PM Fembot wrote:
Raeleanne76, As moth says, you're GP should have a copy of the pathology report. And maybe you can call the surgeon and ask to be put on a cancellation list. Then you have a chance of getting in earlier if something opens up sooner.
Best, from Coq
Jan 22, 2018 08:14PM Fembot wrote:
To all West Coast Vancouver women,
Have you had nipple tattoos that look real? Can you recommend a local artist? I live near Coquitlam IKEA, but anywhere in the lower mainland is fine.
Do you know if it's covered by Medical?
Jan 22, 2018 08:49PM moth wrote:
Fembot, I have never seen the work IRL but there are three 3D nipple artists in the Lower Mainland listed here: https://www.nippletattoos.com/artists
I found out about these totally by accident when someone I know was thinking about getting microblading at Shauna Magrath's salon (beautyink.ca)
Jan 22, 2018 09:49PM Fembot wrote:
Thanks moth! There's a lot of discussion re nipples spread around several boards, not all in one place. I'm wondering if I should start a topic called 'All things nipple'. Maybe try to aggregate in one spot...hm
Jan 23, 2018 09:09AM Wendy3 wrote:
Vilma huge discussion on a thread on Facebook MBC advocacy group and they are also fighting for this. I myself haven’t done Ibrance but I was approved through my insurance. The creepy thing is I’m getting calls from some nurse in Toronto emails etc on when I wil be starting it. Really hard sell its time the pharmaceutical industry was brought to task and the BC government needs to cover it period. I think it will be covered very soon but hey what do I know😊 let’s hope
Jan 23, 2018 01:06PM marianelizabeth wrote:
Wendy, I would not call it creepy if you have been approved. It is her job. Probably the same woman who called me in August and helped me through the process of finding out if I was covered and helped me with a conference call with our insurer. I am not apologizing for Pfizer and their employees so don't get me wrong. I am paying attention to what these wonderful young women are doing to help themselves~~one has US insurance but she has helped to make this front and center.
I do believe it will soon be covered.
Mandytam,I hope you have found info on the transfer~~I and a brief read awhile back and since your mom has such severe LE this might be a god chose. Mine is called severe but it is nothing like what you describe. It is such a difficult thing and I can only assume that she is getting treatment, wearing a sleeve, etc.? I only saw an RMT expert last week for the first time and feel so inadequately educated Something as simple as washing our sleeves every night for instance makes a difference as the mesh clogs up with body oil, sweat and so on. My concern for many is the cost. RMT'sare not covered by my insurance but I can afford it~~with all the other costs for those with only MSP all I can say is that I hope your mom can access all she needs.
Roseanne, I had to wait 7 weeks for my lumpectomy after core biopsy~~summer got in the way for holidays throughout the system. Christmas is usually the same. The waiting game as I call it, is the worst. Hoping you get in sooner. Pathology results often take 3 weeks. May I suggest you check other threads for basic answers as often there are really good answers on the process.
It is so good to see all of you here helping each other. For quite a while, it was very quiet. My heart goes out to each and every one of you, having been there 5+ years ago and on through the years.
Ah, almost forgot about the 3D nipples. Ossa has them and those of us who have seen them can tell you they look so real we all wanted (and did) to touch them I know someone else to who had hers done near Campbell River. My PS suggested "Steve the Breadman" in Squamish. Vinny is famous in the US. Google him and you can see some great work.
Jan 24, 2018 03:30PM runor wrote:
Does anyone know if breast reduction after lumpectomy and rads is covered by medical? I did several Google searches nad cannot find a definitve answer. I see that reconstruction is covered, but no mention of after cancer reduction.
Jan 24, 2018 03:35PM wrenn wrote:
I always understood breast reductions were covered for medical reasons...like sore back etc so you would think the GP could come up with a medical reason following cancer. Sorry I am not more useful. :-)
Jan 24, 2018 06:08PM runor wrote:
I have not spoken to my GP about it. I have changed doctors mid-stream with all this and me and new doc have not really has a good sit down, meet and greet. Need to. Will see what I find out them. But I find people on this forum often are as informed about what's available, or not, as the doctors are!
Jan 24, 2018 07:29PM wrenn wrote:
This forum is not very busy but surely someone will come along with good information.
I wonder if BC people know that if they don't have a GP or don't like them they can see a nurse practitioner at the Cancer Agency. I love mine. She is amazing at covering all the bases and they are at Broadway and Willow so very convenient for many of us.
I hope you get some clarification soon Runor.
Jan 25, 2018 12:06AM Fembot wrote:
runor, I don't know what's covered. If you're in BC you can try searching here http://www.bccancer.bc.ca/our-services/patient-guide/fair-pharmacare
Jan 25, 2018 10:48AM moth wrote:
runor, I think it might be covered but needs pre-approval
(I think lumpectomies are technically called partial mastectomies in the fee guide)
• Reduction Mammoplasty is a benefit for female patients only, where there is significant associated symptomatology such as intertrigo, neck or back pain or shoulder grooving. Ptosis and/or size are not sufficient grounds for MSP coverage of reduction mammoplasty. Mastopexy is not normally covered by MSP.
• Unilateral reduction mammoplasty may be a benefit of MSP if there is gross disproportion present, or in association with approved unilateral augmentation mammoplasty or post mastectomy reconstruction of the contralateral breast.
• MSP authorization is required. "