Canadians in British Columbia
Comments
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GG27, thanks! I will buy it next time when I go to walmart. Don't know when I can start, pray that I can finish before Christmas.
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mk118 I see Dr Smiljanic.
I'm in West Van too. If you ever want to get together - message me.
I find Dr Smiljanic very genuine and caring. I started with Dr Klimo in 2009. They were in practice together and when Dr Klimo retired (he’s since un-retired) Dr Smiljanic took over my case.
I like him and he has served me well. He’s been very proactive with my care with tests and scans as needed. He’s also referred me to specialists for other non cancer related issues.
I first met him in 2009 in the LGH chemo clinic. Then he saw me through my bone Mets in 2013 and now again with my second round of bone mets.
For the next few weeks I will be seeing Dr Nichol (RO) for radiation at BCCA but will go back to seeing Dr Smiljanic on a regular basis for follow up.
cathy67 - I think we may be having radiation at the same time. message me when you will be there - maybe we can grab coffee and chat?
I’m in sunny California this week. A little mental break from work and to gear up for this next round of treatment and testing.
Hugs to all!Marie
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I think aqua (water) is good. But to be honest, moisturizer never did a damn thing to save my boob. This is radiation. It is an insult to your body no matter what you spread on your skin. I think you could be spreading SPF 1000 on your boob and you are still going to get burned. Now..maybe you won't burn. Let's hope!
I steeped a batch of very strong green tea, mixed in sea salt and sprayed that on my boob, because that was the suggestion I got. I burned.
My biggest problem in the weeks after radiation , when the peeling and cracking skin continued, was my bra underwire would dig into the raw flesh, stick to the weeping skin and when I took my bra off at night I'd rip off all that weepy, gooey skin. It was awful! But braless was NOT an option! I finally took a chunk of medical gauze (like for bandages) smeared it with a very thick layer of Zincofax (diaper rash cream, thick, gooey white stuff) and put that on my underneath boob wound. Then the bra overtop. Zincofax does not stick to skin. It's like grease! It stopped my bra from rubbing me. But that Zincofax will never come out of your bra! Wear a bra you don't care if you wreck it. But the diaper cream trick will help AFTER radiation if you crack and weep and peel (and you might not!)
Good luck. This might be a rough few weeks, but you will come out the other end! Hugs to you!
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Hi Marie,
Once I got their call, will let you know. I see Dr. Voduc.
I also want to travel when I have treatment break, but must during school break, then the price goes up.
HI Runor,
Thanks for so detailed information.
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MarieK, PM me when you get back from California. I was unaware of newest met.
Marian
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Hi friends, just wanting to remind everyone of our get together next Saturday in Vancouver!
BCO Meetup
Cactus Club, Broadway and Ash, Vancouver
1:00 pm Saturday November 23
everyone welcome
If you haven't RSVPd yet, pls do! https://www.surveymonkey.com/r/Z9N3LHQ0 -
Anyone know how low hemoglobin needs to be before chemotherapy is postponed? Mine was 93 on Wednesday for chemo Thursday and that was 2 weeks since the last chemo. Clearly 93 is OK because I had chemo on Thursday. Curious though because I do now see why walking up a flight of stairs is hard on me.
Moth, I have booked a flight on Harbour Air for the lunch and Pots is picking me up. I may be just as tired as chemo #2 in my cycle is 2 days prior. But I will be there!
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Moth,
How can I find you then? It will be my first time to meet all of you there. You made reservation? Which name I shall mention to the waitress?
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Marian, so glad you'll make it, you're so awesome!
I don't see anything hemoglobin on the official guideline, just neutrophils and platelets (gemcitabine, right?) http://www.bccancer.bc.ca/chemotherapy-protocols-site/Documents/Breast/BRAVGEM_Protocol.pdf
I'm not sure but I think if hemoglobin or hematocrit go super low they might order a blood transfusion to boost it back up while treatment continues.0 -
Re the get together -
I've made the reservation. Is anyone using a wheelchair or a walker so I can give them a heads up about our needs?
Also, if anyone new or old or lurking wants to join us - please do! It's not too late to get added to the group0 -
Hi Marian,
I saw your question regarding hemoglobin. I don’t know if there is a guideline regarding hemoglobin. As moth indicated, with chemotherapy it’s more about monitoring neutrophils.
Having said that, my MO paid little attention to my steadily declining Hb when I was on Ibrance until it finally hit 80. At that point he said stop.
Below 80 in the US they would transfuse. Here I don’t think they like to give transfusions. When I suggested going back on Ibrance he wasn’t supportive given the anemia. Interestingly, it looks like Verzenio may be having the same effect but it’s a bit too early to know.
Pat.
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Moth, correct. I had a 1 unit transfusion last month when in ER and 2 units in Vancouver years ago when on A/C. I will call BCCA Monday to ask what the baseline is for transfusion. Sadie, after my last transfusion my MO said she will be watching my Hg and will transfuse if too low. Gemcitabine seems to affect blood work. My neutrophils are fine and in fact all those white guys are fine whereas most of the the red ones are low or high. My issue with low Hg is the intense fatigue and thighs burning for lack of oxygenated blood with little effort. All will be fine, just curious on a weekend what the stat is for Hg for BCCA. Truth will tell soon enough.
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Marian, I am happy you will be joining us for lunch and hope you feel stronger on Saturday.
Moth, thanks so much for organizing the get together. How many people do we have right now?
I look forward to seeing everyone, newcomers too!
❤️
Pearl
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Ladies,
I may not attend Saturday gathering, due to some new family arrangement on Saturday.
Sorry for that and enjoy!
Moth,
I just sent another RSVP.
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here's our confirmed
bluesky
nvdobie
pots
dearlife
marian
mariek
J (only have real name, not screen name)
moth
possibly cathy67
anyone missing? Looks like we'll be a group of 8 or 9 tomorrow
ttfn
m
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I'm so sorry everyone but I'm going to have to miss the lunch
I've got a cold!
I need to spend the weekend in bedrecovering - and not infecting anyone else - before I'm scheduled for radiation
I was really looking forward to it... maybe next time?
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Yes for sure next time Marie. Get well soon.
Marian
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Hi I thought I replied before but I am planning to attend again too.
kathy044 in Coquitlam
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Hi MarieK - bummer. get better soon!
Kathy044 - super! see you there
moth
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Hi moth,
Sorry that I won't come, too busy day! Will have routine CT Scan the coming Monday, hopefully it comes out clear, scary.
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ok Cathy thx for letting us know! hopefully we'll meet another time
ttfn
m
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Hi Moth,
Thanks for organizing today’s lunch. We were a small group with lively discussion. I’m trying to get Marion back here in springtime so maybe we can do another lunch with more of us once Pearl is back.
Be well,
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Hope you are all well. For those of us that met up at Cactus Club in 2018, you may remember lots of talk about endocrine therapy options. I ended up taking the ovarian suppression with AI option, per my MOs suggestion. Well surprise! This month I had my first period in 22 months (despite the zoladex for ovarian suppression). Waiting to hear from my MO on what to do from here. Anyone else out there see a return of their period while on AI, or have their estradiol monitored to confirm their post menopausal status? Apparently I’m up to 50 pmol, which apparently is double the expected level while on AI. When I asked my MO in the past about estradiol monitoring she said it’s not typically done, and she wouldn’t know what frequency of proactive testing would be useful. Apparently they only check if you have tender breasts or other common signs of a period.
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Pots and everyone who came out, so good to see you all & catch up! Looking forward to the next.
Walden - wow, that's a surprise. I did find one very recent study which said a) they have a heck of a time measuring estradiol as different methods yield different results and some of the drugs might be interfering with the testing methods and b) they don't really know what the target levels should be; should it be zero or can it be higher..*
fwiw, I think if I were in your position and had a strong ER+/PR+ I'd be considering an ooph. But you're young and an oophorectomy has its own issues too so it's hard. I think there must be a section on this board about ovarian suppression where you might find some info*
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5684855/
" It may also become difficult to gauge whether premenopausal women have achieved adequate ovarian suppression with GnRH agonists. Thus, we call for a more concerted effort from the scientific community to improve and standardize measurement of extremely low estradiol levels. In the same way that estrogen receptor staining has been standardized, and is widely available at most centers, we recommend that ultra‐sensitive estradiol quantitation should also be clinically available and routinely utilized for breast cancer patients. This would also allow us to answer many clinical question moving forward – Are lower estrogen levels associated with improved breast cancer recurrence rates? Is complete or near‐complete estrogen suppression necessary in premenopausal women to achieve superior results compared to tamoxifen?..."
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Hi ladies,
I reported to my local cancer clinic on Nov 20, and did lupron injection there and started to take Arimidex. Then, I felt very hard to sleep well, only couple of hours every day but extremely tired and then headache, and too much family stuff. I am so lucky to spare chemo, then face side effect of hormone therapy, not sure if this will last forever for the coming five years. Cancer is so brutal. In the past 40 years, I never experienced period pain, finally I am suffering from this. Hopefully you are doing great. Waiting for dreadful scans and radiation.
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I just reviewed some of the more recent posts and noticed I missed the lunch yesterday. I haven’t been checking in on the site as regularly as I use to, but hopefully I’ll make it to the next one. Hope you all had a great day, and are doing we’ll in your recovery.
Moth-Thanks for the article link. I’ve also read some studies that said post menopausal women can see their estradiol levels rise while on AI (even patients who are post menopausal before treatment). There is lots of speculation, in the research I’ve read, about why this happens and what it means for treatment. Like you said, monitoring estradiol seems to be highly debated because they don’t yet have reliable ways to measure low levels. Some research says 2.73pg/ml or lower is the optimal target for AI users, but most commonly used tests don’t measure below about 10. One American patient I’ve been in touch with was actively monitored by her MO, and changed her treatment when estradiol got too high. I requested monitoring estradiol a year ago and my MO said it wasn’t necessary and suggested it was just a cash grab when I mentioned some American centers do that as the standard approach. Now here I am wondering if BC Cancer protocols are out dated because they need to save a few bucks, or need more definitive research before they adopt a more expensive protocol? As you can tell I’m a little frustrated with the lack of consensus on this topic
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Walden - just a btw that you should have got an email from me as well. I emailed the distribution list from the 2018 lunch... maybe it got caught up in spam folders. hopefully we'll see you in the spring! I hope your MO comes up with some plan that makes sense to all you and restores your faith in the treatment plan because I'm guessing this kind of shook you up. I mean the whole point of this is to get estrogen to a certain level..
cathy - fwiw, the scan and radiation were pretty easy for me; hopefully it will be the same for you. It's literally just a lot of lying very still. Parts of it were for me pretty relaxing as I just chilled out while the techs and nurses all did their stuff.
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Many thanks Moth for organizing yesterday's lunch and special thanks to Marian for flying to Vancouver to meet with us. It was wonderful to see friends from last year and to meet Elderberry too! Great idea to repeat in the spring, maybe April sometime.
Meeting in person adds so much. Somehow I feel as if I have known you all a long time!
❤️
Pearl
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Moth-thanks for the heads up. I’ll check my spam so I don’t miss the next one. Would be lovely to see you all again!
Looks like I’m switching to tamoxifen with buserelin for ovarian suppression. At least I don’t need to worry if the OS is fully working on Tamoxifen. I’m thinking of it more as a nice to have than a must do. Guess I have stubborn ovaries, they don’t want to quit! We will see if the buserelin does a better job than the Zoladex in a month. Fingers crossed
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Moth, thank you for organizing out get-together last Saturday. It was interesting to have 3 of us with metastatic breast cancer and 3 not. I have the list of us who were at potlucks 3 years ago and will send an email to those who I think might like to attend another. It would be nice to host another potluck at a Vancouver friend's but will see if I am well come spring.
Marian
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