Hi everyone, I've been gone for a long time and I deleted my old posts. But I'm back now. I'm sad to see that Marian passed but inspired that she lived such a good life.
Feeling rather lonely with my new Stage IV diagnosis. But doing quite well, considering.
Saw moth's post for new peoppe with Stage IV re: nausea. Thanks for posting that.
Hello BC sisters,
I got myCovid shot yesterday, Pfizer, at the Italian Culture Center in Vancouver. Process was smooth and very efficient. My arm is sore today and I’m curious to see how the SE unfold.
Welcome NewDay to the mets club, you aren’t alone.
Yeah Pots. My jab is on Friday. Who would have imagined I would be so looking forward to a vaccination!
Mine is also on Friday, I am waiting so anxiously.
To many this is not news as it's posted on other threads, but exactly 4 years after breast cancer it is now looking like I have uterine cancer. No biopsy yet, but ultrasound, to quote the ER doctor, 'is all bad news". Waiting to get appt with gyno. I am not holding it together at all and am falling apart.
Hope everyone who gets the jab has only minimal side effects.
Oh Runor. I am so sorry that you are now facing this new diagnosis. It’s so unfair and unimaginable. I wish there was more that I could say or do. Just know we are here and you are in our thoughts. Please let us know as soon as you know more.
So sorry to hear this Runor, my best thoughts are with you.
Runor I am sorry you are going through this. The anxiety is so awful. I am sending you my best wishes for finding calm while you wait and results that are better than expected.
Runor, know that you are in my thoughts during this difficult time. I’m wishing for good news and holding your hand when you stumble. You’re not alone.
Thank you everyone.
Ilowen, yes, the stumble. I have fallen. Flat on my face. Today when Hub had to go back to work I so badly wanted to beg him to stay with me. Being alone with these thoughts is awful. But he is suffering too. He is a man who needs routine and things to be the same. Work is his safe place. I have to keep in mind this is hard on so many people. But I have stumbled down the black hole and I fear I will never get out. I have been Googling the long term effects of pelvic radiation and I had to stop. I had to walk away from the computer. There was no good news. I hope this goes well but my feelings and the ultrasound say otherwise. Says right on it, suspected malignancy. I hope all of you are supported in the trials that you face. Alone with it is an even heavier burden. Gratitude and hugs to all.
runor, you aren't alone. Ilowen, I am sad to hear about your progression. We're here, we have all fallen flat at one time or another. A second cancer diagnosis shook my soul hard and filled me with despair, yup .....and then, all the tests, appointments, decisions...so exhausting. Take it one step, one appointment at a time, slow down the brain. Wrapping you in hugs
Pots, I haven’t progressed yet but I guess I’ll find out soon (scans this week). Sorry if my post was worded poorly.
Runor, I remember some very important advice that many on this site have given prior to an official diagnosis ... stay away from Dr. Google. You are not a stat, you are a unique individual and your experiences are yours and yours alone. If Dr. Google was all-knowing, I’d likely be on my death-bed right now or in a wheelchair and I’m clearly not.
Dear ladies, sorry to hear all these, I always pray for our group. I will meet MO this Thursday, then checkup in two months.
I was curious about how BC health authorities determine who is considered “Clinically Extremely Vulnerable” and therefore eligible for early Covid vaccination. Found this on the govt websitehttps://www2.gov.bc.ca/gov/content/covid-19/vaccine/cev
Well, first jab under my belt with no issues other than a sore arm for a couple of days. I’ll be interested to see when I get the second dose. There is new studies out of the UK indicating cancer patients (I think primarily those on immunosuppressive treatments) need to have the second dose of Pfizer within the three week window for it to be effective. Apparently we have a much lower immune response than most and efficacy is greatly reduced if the second shot is given more than three weeks out. Awesome. So much for the get out of jail free card!
Well that’s unfortunate to hear, Sadiesservant. There’s so much they’re still learning about this bug and the vaccines. I get my jab on Wednesday. Hoping my SEs won’t be any worse than a sore arm.
I got my jab 2 days ago, arm sore is okay, but I feel sleepy the two days after that, and I feel hungry frequently. All those are minor, just like a gentle cold. Anyway, it is back to normal, but I can feel still not totally recovered, cause today I don't want that much to run, usually I can run every the other day. I was told they will contact me once second dose is ready.
Runor, you aren't alone. I'm so sorry to hear about your diagnosis. It is so hard. We're here for you. The anxiety is very difficult. Post here as often as you need to. Sending love.
Sometimes it is hard late at night or first thing in the morning.
I was at one of Marian's get togethers long time ago and really appreciated her doing that for the group.
Have a good day
In lower mainland BC Canada and starting AC chemo on Thursday. Looking for ways to mitigate neuropathy. Any idea of how to access products to ice hands and feet?
SaraJay, I ordered ice socks from Amazon, I couldn't find any locally. My cancer centre in Nanaimo has ice mittens, I would think that the centre in the lower mainland would have them as well? good luck.
SaraJay, you don't need to ice for the AC part imo. I ice for taxol & now nab-paclitaxol. I use rectangular icepacks from Superstore, roughly 5x10 cm? for my feet I fold them in half, stick my toes in & then put on top of them giant over size socks (stolen from my husband) just to keep them on.
for hands, used to do the same & then stick oven mitts over them to keep them on & insulated. That was back when dh or someone else was able to come with me for chemo & they'd jam the mitts on for me & adjust my headphones & hold up my cup to drink. Now that I'm alone & need my hands, I just keep the icepacks folded over & secured with a rubber band & slip my fingers in.
I bring them all in my own cooler on wheels, packed with hard sided icepacks to keep them cold. I swap out every 20 min or so. Taxol infusions I went through lots as it was a long drip. My nab-pacli is only 30 min. I start icing about 5 min before & keep them on about 5 min after so I only swap once now.
rubber bands help to keep them in place if you're doing it alone
I think dh got the icepacks for something like $4 each. It ended up being the cheapest and easiest solution.
btw, I'm like the only person who ices at Surrey. All the nurses know me now as the crazy lady with the icepacks but I've got the last word as I've lasted a year on taxanes with very minimal neuropathy & it's the major reason people stop treatment with it so I'm just ignoring all the raised eyebrows. They *still* only think icing is for taxotere and for them it's for cosmetic reasons to prevent nail loss/blackening ...
yes surrey has ice mitts for hands too but I thought they weren't as good as mine and they had nothing for feet
I too am the only "crazy" person who ices at chemo. I lasted 16 cycles on doxirubicin. I iced my mouth as well, the only time I had mouth sores was the time I didn't do it.
I'll look into options, ad I have time before Taxol.
Looks like I'll be on a Thursday schedule for now. When are you there?
every 3 weeks starting next Thurs Apri 29 They usually give me the actual time on Tuesday before so I don't know exactly when
There's a chance we could cross paths on May 20 🙂
I imagine most here have gotten (at least one) vaccine, via being clinically extremely vulnerable.
But if not, or if you are conversing with friends/family who are not CEV and are confused, this summary of the recent NACI guidance re: AstraZeneca (risk vs. benefit) is really interesting and seems pretty sound:
In particular, this helps people figure out whether AZ might be worth it, given the blood clot risk vs. ambient level of COVID in your community and how old you are (meaning, how soon the age-based program will offer you Pfizer or Moderna).
NACI = National Advisory Committee on Immunization
Original NACI material: https://www.canada.ca/en/public-health/services/im...
moth: am I reading your post correctly? You are going to Surrey for TX? Are you still on a trial that BCCA doesn't "support" ? It is a good thing the bridge is no longer a toll bridge.
Elderberry - yes, I've had my treatment all along at Surrey, right from Dec 2017. The trial was official - huge international trial and BCCA Surrey was one of the sites - I'm not entirely sure whether we became a site because my Dr wanted us to so she could get me in or whether it had nothing to do with me..... BUT, I ended up being the only Cdn enrolled as the manufacturer closed the trial soon after due to results from a previous trial making them change their mind about the meds they were studying. I still get the immunotherapy directly from the manufacturer now, under compassionate access.
I don't even remember when the toll ended lol. I had the little sticker thingy and I guess we paid a discounted rate or something? I never cared enough, just put the bills on autopay and never looked at them. The Cancer agency does have a pretty large financial support thingy so I think they would have helped if we needed it. Oh & that specific trial also have financial support - I think they would have covered parking and a meal on the days we came in for treatment. Didn't claim any of that because with covid parking was free & I wasn't going to go to a restaurant lol