Canadians in British Columbia

I haven't used them but if you search "Dr. Chia" here there was a post years ago saying her was interested in it. They won't supply them but if you bring your own I don't think they would object. They did supply me with cold gloves which I didn't like because I couldn't use ipad.

Keep us posted.

Hello,

Thought some of you might find this article interesting re: Ibrance and tumour marker testing that doesn't happen in Canada. The article seems to imply these are for stage 4 ... so if you don't want to read it, that's OK.

http://www.cbc.ca/news/canada/british-columbia/a-tale-of-2-friends-with-breast-cancer-1-has-coverage-for-costly-drug-the-other-forced-to-pay-1.4495123

It's a CBC article about "A tale of 2 friends with breast cancer" where 1 has coverage and the other is forced to pay. The one forced to pay lives in B.C.

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Hi AnxietyGirl,

Welcome, and I'm sorry you have to be here. I didn't use a cold cap so I'm not able to help.

I'm wondering where you can purchase the cold cap, what is their return policy? If you never use it, can you get a full refund?

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I'm not on this site much now that it has been a few years and I'm doing well. I hope you're all doing well too!! I didn't read through all the messages, but thought if more people knew about Ibrance in B.C./Canada can lobby for it, for those with stage 4.

I make sure to get some sunlight/daylight whenever possible and not to work too much. I hope you're all getting a chance to enjoy some sun.

Best wishes.

Runor, my breast reduction was covered. I had it 3,? Months after mx

Hi NewDay123,

I wanted to wait until I knew if I would be allowed to use it before I spent the money and made the arrangements, since it's all a big hassle and I can't really handle any more of that in my life these days! Trying to keep this all streamlined.

Then I spoke to the Cancer Agency and they turned me down flat, cooling caps are banned in all of their chemo units, end of discussion, so now it doesn't matter anymore. I'm doomed to lose my hair, there's nothing I can do about it. It would be hard enough if it was available and I couldn't afford it, but it seems exceptionally unfair that I'm willing and ready to put myself into debt for this and the Powers That Be are actively preventing me from doing it, it's almost like they ENJOY seeing their patients lose their hair. >:(

(Apologies if I seem angry, I am right now, it's just all too much to cope with at the moment.)

I start next Wednesday, Valentine's Day, which has always been my least-favourite day of the year (ask me about my Valentine's Day horror stories, ugh). The irony isn't lost on me. It's times like this when it's hard to believe that the universe doesn't have it in for me.

I've been in touch with the Canadian distributor for the Paxman system and she's suggesting that I go to the media with it (CBC and CTV), but I start chemo in 6 days, I'm already exhausted and incredibly fragile from all the stress, I work very long days with no time or privacy to make phone calls to sort this out, and I'm doing everything in my power to keep this diagnosis private, it's all so much, I just don't think I have it in me to tackle this by myself right now.

It shouldn't have to be this hard. Cancer is hard enough all on its own, there's no need for those in power to make it more difficult for us.

The use of cold caps is approved by Health Canada but some centres just don't allow it. There was an article about a woman being allowed to use it at Penticton Hospital (which is closer than Seattle) but might not be worth the struggle to travel while trying to maintain a heavy work schedule and to maintain privacy. Going to the media might be an added stress. Maybe once you are done treatment and have built up some strength you could make that a project.

Telling you your hair will be back by next year is not going to help but finding ways to face this nightmare with fewer stresses will help.

Oh Hugz, I hate to hear this. I am hoping it is all a horrible mistake. You sound like you have your ducks in a row. Hope you don't need them. Prayers.

Hi Hugs4u. I don't think that Ibrance is approved yet. The last I heard it Pfizer was in negotiations with the BCCA but I don't know if there has been a final outcome. I was able to access it through my extended health when I was initially on it. I had to stop due to severe anemia but my MO is now thinking we may try again at a lower dose. I'm not sure if access will be an issue for me now.

As to oncologists in Surrey... sorry I have no suggestions as I am on the island. I don't know how easy it is to request someone in any event. Our system isn't really designed around choice. Fortunately, I think the world of my MO.

Pat

Sadie/Ash. Thx for heads up on Ibrance. Sure hope I won’t be having a recurrence but’s it’s nice to be educated.

Nope we sure don't get to choose our oncologist except sometimes the rule of “squeaky wheel gets the oil" works. If I hear of some good surrey MO/RO recommendations which I hope you girls will chime in then I am sure to be the squeaky wheel.

When your dealing with your life you want the best. I did fire two docs in the last ten years. One said he hates paperwork and yup you guessed it, I required paperwork that he kept sitting on. But the last straw was when he laughed straight into my face and said I wouldn't get lymphedema. dang it anyway to say the least, that did it. BTW I did get lymphedema.

Other was my breast surgeon. Wow she got so flustered at my thoughtful questions she had to leave the room temporarily to relieve the hot flash I gave her. When I told my MO I wanted another surgeon scheduled he hummed and hawed and quietly said something under his breath about hospital politics (?) not going to like it.Dang it, I'm dying of cancer and do I look like I care about their scheduling of docs and who get OR time etc, just give me what I want... ugh! Btw girls the pleasant words “I'm not comfortable with that doc" works pretty good" as squeaky wheel ammunition.

I'm going to try my best to make sure my wheel is extra, extra squeaky for requesting a mri Friday. I hope it works! Thery hard to get as we all know. New doc so I'm in unchartered waters.

Funny how cancer makes you gutsy. I'm pretty passive otherwise.

Ok all, have a smashing great day all you and looking forward to MO/RO recommendations. Dishes piling up here and are calling out to me. dang

Wrenn: Many moons ago,and I shouldn't say it but it's true, I found chia not to be socially inept when he was training female interns. This is when he would pull out his full show of peacock feathers. I was entertained by it all and he was more attentive. Yes he will answer all your questions which is wonderful, but boy he sure didn't want to hear about my vitC IV. I learned to shut up really quick when it came to complementary med.

Anyway I don't want this thread to be a gossipwagon so I'll quit while I'm ahead. Just looking to see if there are any good MO /RO in surrey then I may not request chia. I am grateful that he treated me aggressively.I do feel he is brilliant.

Wrenn lol, yah I remember the good ole days when I went to bcca and the parking was something like a buck an hour. That all changed as I think they went private. My pet peeve is paying to park a car and unless I’m really ill I’d don’t mind walking up to half a mile even in the rain If it saves bucks.

For my giant tumor stuck to chest wall they sat around the table and discussed who would do the job and how. But yeah they do have a protocol to follow. The smart oncs can tweak your treatment to optimum, so experienced onc is good. Also a onc that loves his job is a good pick! (And yes I did have mammos for five years starting age 4O but tumor was was missed for dense tissue.) I hear Karen Gelmon is good and Marianne liked Shenkier. At bcca.

I’m glad mo did have some compassionate words for you. We sure do need them in times like this.

UBC is enrolling cancer patients with chronic pain in a study - sounds like they're wanting to use immersive /virtual reality media for pain

http://blogs.ubc.ca/arvrha/files/2017/05/Recruitme...

moth. Thx for the info on the study. I'm signed up. It's a month long study and takes 30 min a day. That's doable. I'm waiting for all the particulars in my email to come. Apparently you wear a head set that's maybe about two pound size and they come and set up equipment for you. I'm on vaca early March so will start late March if all goes well.

They are recruiting 100 people so act fast if you are eligible and want to. Thx.

Also did you get a good flavour from talking to your new surrey mo? Does he answer all your questions. How was your first round chemo on you?

I did read up on Pansegrau and his rating said he was pleasant and answered questions. Glad you confirmed it! Thx

I wonder if he likes dr google. Most docs don't like the competition as it keeps them on their toes when you saddle them down with googles research. I don't bother with anything that sells products just university type and major cancer centres.

So far he looks like my only choice if I do decide on surrey. Nope you can't pick your MO unless your a squeaky wheel. But I'm gonna try.

AnxietyGirl how did you valentines treatment day go. So sad they won't cold cap. I could handle no hair but no brows and lashes was such a blow. I felt like I was ETs sister.

moth I've had that great drug. It works! Towards my last chemo to be finished, one morn I came out of my bedroom and felt so weak my brain said to lay on the kitchen floor and so I did and didn't move muscle. Thankfully My sis had one look at me and packed me off to bcca where they admitted me for deadly low levels. So low I was not in my right mind to even know how Ill I was. They gave me that nupeogen (sp?) drug.I bounced back quick and they discharged me after a day. Oye the things you go thru. I hope you recover super speedy so you get your next chemo on time. Keep marching forward