Canadians in British Columbia

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.

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!

MarieK, PM me when you get back from California. I was unaware of newest met.

Marian

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!

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.

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.

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

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.

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?

Hi I thought I replied before but I am planning to attend again too.

kathy044 in Coquitlam

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.

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,

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?..."

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

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