Canadians in British Columbia
Comments
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CanuckMom - I had dose dense chemotherapy and I do know several others in Vancouver who have had it. It would appear that each oncologist follows a slightly different protocol, and so much depends on the pathology report and what our receptors are. I am sure if you talk with your MO, he/she would explain to you why you are not on dose dense. I am not sure if there is any research to suggest that one is better than the other. Good luck with your chemo - it sucks, but somehow many of us seem to get through it, and actually reach a point where it seems like one bad dream. Rest when you need to and if anyone offers help - accept it! These sites are a wonderful resource and lots of the women on here have been through many things, so I am sure you will find answers to many of your questions. I also went to my MO armed with countless questions - information is power - the more we know the better!!!
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CanuckMom, I too had dense and I don't believe it has anything to do with lesser treatment in Canada but rather with the pathology more for each of us. My BC at first was thought to be no big deal but once I had the lumpectomy, it was a totally different story and my MO preferred the chemo get into me as fast as possible. Dose dense usually means a fast spiralling of WBC etc. and so we get Neupogen shots (actually do it ourselves) several times each cycle to boost the immune system. In the US they use another derivative so it is just one injection but it is very expensive (pharmaceuticals!) and FairPharmacare in BC does not pay for that drug, only Neupogen. If you are familiar with FairPharmacare (most of us only found out about it when Neuopgen came into the picture) they pay for the drug at a point depending on your income tax situation. Also there is/was the Victory Program which co paid much of the cost. I think Neupogen was about $2800 per cycle but I never paid anything like that. My MO said the majority of us go with the 3 week cycle and not dose dense more often than not because of the cost. BTW, the other drug can be covered if you have an extended health benefits plan which I did not.
I did see in your pathology that your sentinel nodes were negative and they may have had a bearing on what your MO has prescribed. But I would have that discussion with her/him.
Marie, keep us posted after your appt. next week. Glad you are staying off the checking of your BW! I am passing all the 2 year anniversary marks and all is well physically though it seems as though the past week has had me spiralling down~~I suspect it is the anniversaries. I am doing the short course triathlon at UBC with two of my kids on Sunday and that is the actually anniversary of the diagnosis so am hoping once I finish the tri and that day is over, that I can get back to feeling good in all ways!
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OK thanks for the info ladies. I will ask my onc about it when I meet with her next week. Good to know this is based on pathology and not a 'conveyor belt' of breast cancer tx!
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Hi Ladies
Back from a three week trip home to Norway, Great trip, got to see most of my family. Hot weather (not normal) 30+ degrees every day.
Looong trip home as we had some delays. In Amsterdam they could not remove the gate from the plane, Took 45 mins to manage to remove it, Then landing in Montreal they could not attach gate so after an hour on the plane busses on hydraulic lifts were brought in to get us off plane, By this time we were running late for our connecting flight to Vancouver. Rushed to get through customs and security, Arrived at gate 10 mins before plane was scheduled to leave only to find boarding had not started yet, found out we needed to get another plane as there were safety issues with our scheduled plane. Waited two hours for a new plane to come. Finally we made it to Vancouver at midnight three hours late.
Welcome canuckmom.
Hope you all continue to have a great summer
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Thanks Ossa,
Hanging out in Oyama, BC right now...my favourite place to be.
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Pt. Grey Triathlon today with my daughter Mary and son Andy~~short course and they did it slow with me. I won first place in my age category! Beautiful day and exactly two years from diagnosis~~great way to celebrate and we had sushi after and cold beer is next.
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Canuckmom - welcome! As Marian said we are all different and each ONC is too. Best thing to do is ask questions and educate yourself.
OSSA - good for you for taking on such a long trip. I bet you had a fantastic time over there. I love to see new places but I hate to fly and whenever my hubby suggests any place the first thing I ask is how long is the flight? I'd love to go to SPAIN so I'm working up to it with a trip to TO in the fall.
Marian - you look fantastic and happy! I hope you had lots of sushi and cold beer to celebrate!
My DX cancer-versary is tomorrow. I actually had forgotten it until you mentioned yours. I don't really dwell on those dates - other than to say that I have passed them and continue to do so with all my focus.
I just checked my BW and the TMs are still down. I just need to see my ONC and get the PET results later today.
Then I can forget for awhile and live my life...until the next test/appt!
Hope you can to enjoy the sun today wherever you all are!
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Good morning ladies!
It had been a looooong time since I have posted, I've checked in from time to time but I have a lot if catching up to do! A lot has changed, Hazel is almost 2!!! I'll post a whole bundle of stuff later.
I just have a question. When does the 'survivor' part of this journey start? The DX? After surgery? After treatment? I was asked how long I had been a survivor, but I didn't know how to answer. What do you use as your date/anniversary?
Hope everyone is doing well and enjoying the summer!!
Mir.
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Mirmi, that is a good question that I have seen several times elsewhere. I guess I have not decided when to measure from other than from my last surgery which was in December. I have never liked the survivor word anyway and instead go with NED (no evidence of disease. But I suppose realistically, the date would be from the final treatment or surgery that removed or erased cancer. For me this would have been when radiation ended, in mid June, 2013. That seems like the last thing done after chemo and mastectomy. Looks like your rads ended just after mine did. I think I will always relate to the date of finding the infamous lump but it is not like I dwell on it. Hazel must be so much fun now!
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Marian, you never cease to amaze me! Congratulations on your great run. You are an inspiration, and such a good role model for your adult children.
I have always wondered about the whole "cancerversary" thing, and I have read and it has been suggested to me that it is the date of diagnosis. I go with that, because it is the only date that I can remember from the whole experience.
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Marian you are amazing
hi ladies hope you are enjoying the weather. Last day of holidays, back to work tomorrow
Mirmi. I counted my NED from my mastectomy date as the biopsy came back NED...
(had chemo first then surgery.) Have an appointment with plastic surgeon next week Thursday as I want some revision done.
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OSSA be careful and think about what revisions the PS suggests. I'm going on 4 years of reconstruction and revisions and I could probably go on for many more years.
Every time I go in for a follow up the PS says he can tweak it a bit more - but at some point it has to stop.
I will never have perfect breasts - never had them to begin with - but these guys are artists and see all the slight flaws that they can "fix".
I see my PS again in August and he has already started rumbling (at last 2 post op follow ups from surgery in Feb) that one more fat graft should do the trick. If so, it will be my third fat grafting!
Don't get me wrong, I do appreciate all that he has done for me (and that he is conservative in his approach) but the time is coming for me to decide when I've had enough.
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Didn’t realise its been so long since I checked in.Dutchgirl: sorry you lost your house. Worked with a woman who also lost theirs. Friends took us in in 2009 with the Glenrosa fire so it was time to pay it back. Thankfully now the fire is out and everyone is back home
Welcome CanuckMom
Ossa – hate delays when flying, but its part and parcel I guess. Good to hear you had a great time.
Marian: you are amazing – way to go !
Sorry to those I may have missed – thinking of you nonetheless.
At work but wanted to take 5 minutes out to say hi and happy BC Day this weekend.
Like Ossa, I take the cancerversary date when they told me I was NED. Guess dates don’t really matter – we are survivors from day 1.
We are off to the States camping – Curlew State Park. Trying to get a camp site in Summer here is practically impossible. Summer has been busy – just with living which is fine by me.
Peace and love to all xxx
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Hello ladies, I haven't been posting for a long time. May I join you on this British Columbia forum as our journey continues ? I have 4 treatments (Herceptin) left . I'm experiencing more muscle, bone & joint pain lately.. I'm not sure if the SEs are from Herceptin or letrozole. I'm trying to stay active but I find it extremely difficult. Anyone else on letrozole, how are you coping?
Mariam- Congratulations on your recent triathlon! YOU are a great inspiration.
Enjoy BC Day weekend!
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Thanks everyone for your comments...I. Have decided to wait till next summer to pursue breast reconstruction. I'd like to make sure the bone tumours are not spreading
. I will definitely check out the Canadian board. 0 -
went to se my PS today he is going to try fatgrafting first as it is the least invasive. I have had one session of fat grafting however it all reabsorbed, PS said he will do more this time also some lipo where I have scartissue If I am not happy with that he will then take out my current implant and put a tissue expander in to expand some more. He did said that he thinks I will need some major surgery in the future as the skin on my lower foob is very thin. He said he can see that become a problem for me, but we will cross that bridge when we get there
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OK Ossa at least you have something to work with and hopefully move forward. Who did you end up getting for a PS?
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Marian. I am back with the PS who did my mastectomy as well as recon. No one is willing to take on another PS's "problems" Any PS my doctor has contacted said they only take new mastectomy/recon do not fix "issues"
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hi everyone, just back from my oncologist,and will be starting tamoxifen this weekend....who thinks I should be okay on it as I already have chemo induced menopause,arthritis and hot flashes...some of the main side effects us ladies complain about. So let the tamoxifen weekend party get started....the treatment that just keeps on giving.
Hope everyone has been enjoying their summer to the best that we can ...what ever stage of treatment we are in.
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Gardengirl. I'm on tamox too... have been for almost 2 years and really, in all honesty I do not suffer too many side effects. In fact none that bad that we would consider coming off it. hot flashes / achy hips and one new one is cramp in my feet. It doesn't last long and not every day (thank goodness) but I am seeing my MO next Thursday so will ask her.Hope everyone is enjoying a nice weekend.
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Tazzy. I am so glad you described your side effects. I have exactly the same side effects. Have been getting cramps in my feet(and sometimes calfs) a lot lately.. Was starting to worry about my achy hip Thank you for easing my mind
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Ossa I have had fat grafting 2 times and it has helped a lot with the look and feel of my foob.
Like you I had very thin skin on the lower part of my foob. It was so thin that I could see a bluish gray underneath - alloderm tissue - showing through.
The last time I had fatgrafting (Feb 27) I had extra lipo (free) and a tummy tuck (not so free).
I see my PS again tomorrow for a 6 month follow up and I'm looking forward to hearing what he has to say. At my 3 month last visit he mentioned 1 more fat grafting - if so I'll get my love handles lipo'd as a donor site!
I hope you get some added benefits to your fat grafting too!
Marie
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MarieK
I did not have alloderm but still have the bluish gray area you describe It looks like I have a big bruise at the lower end of my foob
Good for you.. I have been thinking of a tummy tuck too, but have some issues to figure out first. Have some aches and pains I need to get confirmed as "normal" before I even start thinking of going down that route.. Also need to loos some weight before potential tummy tuck
I will be in your pocket listening to what your PS says
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hi Tazzy, thanks for the info and I am glad to hear you have had two years with not too many side effects. My onc thinks I should be ok ...since I already have most of the side effects that we complain about. I do find the arthritis in all my joints the hardest.... But from chemo .The hot flashes I have all the time , but used to them. I picked up my bottle, but think I will start this weekend. Wondering what time do you take tamoxifen at? On the hormone groups I see there is a lot of talk about different times .
Thanks so much for the info,and hope it goes well next week at your MO and the cramps in your feet go away for you.
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I just read somewhere to take Tamoxifen at night as somehow the dark helps the effect of Tamoxifen. I used to take it in the morning but have switched over to evening
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Interesting - I take my tamox in the mornings (with my vitamins) so will ask my MO tomorrow when I see her. Weird how after this time the SE's show up.Hope everyone is having a wonderful summer wherever you are.
My Outlaws arrive Friday for a month... Thank goodness I love them to bits. Busy time ahead.
Hugs and love to you all xxxxxxxxxxxxx
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Ossa and Tazzy, thanks so much for the info, I am thinking of starting tonight or possible Friday night. Just not sure if a new side effect would show up that fast or not . Mind you ,with all the treatment I have had so far, it always makes me feel like I am jumping in the deep end of the pool and going for it and hoping for the best.
Thanks again, Tazzy hope you have fun with your outlaws and Ossa all the best to you as well !
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All went well with my 3 monthly check up - woo hoo! Switched me from Tamox to Anastrozole (Arimidex). Knew it would happen, but felt a wow moment when realised I'd been on tamox for 2 years.
Well Outlaws were delayed from England so they missed their connector to Kelowna. No flights available tonight, poor DH has driven to Vancouver to pick them up. Geesh! Still least I get a night to myself
Have a great weekend everyone xxxxx
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Ossa, can you give me the name of your PS? I live in Langley and would like to look into fat grafting. I currently have had no reconstruction since tissue expander failed after UMX last fall.
Thanks Carrie.
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Carrie. My PS is Dr Oxley. He is on 96th ave, across from Surrey Memorial. Share office with three other PS
Tazzy
Did you have a choice regarding the switch? My Mo asked me if I wanted to switch or stay on tamox... for 5 years then switch to an aromatase after that. I asked the benefits??? Was told there was a slight advantage for me to stay on Tamox.. (1%) over aromatase.. I said I will take it.. Any % is better than none.
Going to my GP on Tuesday. Have a pain in my back I worry about, have had pain in the area since before C, nothing showed on scans , but three years later hmmmm need to find out what this is... aaarg does this ever end
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