Coronavirus
Comments
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I went for Herceptin on Friday. They gave us masks at the reception desk and took a temperature before you were allowed to sit in the waiting room. I already had a stretch bandana around my face but they wanted us to wear the surgical masks.
My pet scan is scheduled for April 20th. I am in a hot spot in NJ and I am tempted to put off this scan appt. The thought of laying in that machine is not too appealing. Wish I had a hazmat suit.
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Tina2. I'm visualizing you mooning everyone in a drive up Faslodex line. That made me LOL.
I go to a huge building connected to other huge buildings at UTSW in Dallas. I think there are some hospital rooms. Usually I sit in the chemo waiting room to get my labs and shots. I go back to the lab area, it's usually one room with one patient and two nurses for the shots. I'm going to wear my mask and gloves. Everyone in the waiting room has them on. I just say I'm not sick, just protecting myself.
I'm thankful that Faslodex does not affect my labs. I'm not immunocompromized like most of the patients in the chemo room. I do have lung mets, I can't be too careful. I am at high risk if I get this virus. 💞
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About masks--
When I went to the hospital last week for scans, I was required to wear a mask the whole time and everyone in the building had on a mask. Same when I saw my endocrinologist this week.
At this point I don't hear anybody saying masks don't work. Every doctor I've asked has said "ALWAYS WEAR A MASK."
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Now it seems the CDC is changing the advise to wear a mask.
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I've not ventured into any stores the past 4 weeks, but I ride shotgun and wait in the car while hubby goes shopping, just to get out for a bit and see some scenery. While I was waiting for hubby I decided to dust the dashboard. My windows were up and I was enjoying some jazz. There was a guy sitting on the hood of his car next to me talking on his cell phone. Dusting at home usually causes me to sneeze. And its not usually once its usually 5 or 6 in a row and then I'm done. Well, after dusting, I started sneezing and counting "1, 2, 3..."....outloud and on my fingers. Well the guy talking on his cell phone next to me on his car looked over at me with huge eyes and immediately dashed into the driver seat and closed to door mostly leaving a small gap....after my last 2 sneezes were over, I felt bad I scared the guy. I had done the same thing many months previous waiting for hubby to come out the hardware store (tools interest hubby not me) and no one batted an eye. Now its different people are on edge, and I don't blame them a bit. Once I sanitized my hands I went over the dashboard again, not for dust but to clean up my snarfle.
Crazy times we are living in now. My church is not meeting until the social distancing is lifted April 30th. Instead we are keeping each other company with phone calls and sending deliveries and groceries to those who need it in the congregation and outside it. I've seen alot of people come together while apart in my community, its been really good to see.
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lol Radagast Rabbit...:)
It's been decided for me that I will be getting my Faslodex shot at home by a visiting nurse, the hospital recommended it. I just hope the visiting nurse knows how to give this type of shot, and is wearing a mask. I agree, I think masks are essential, can't understand what my MO was talking about. And I hope the nurse uses hand sanitizer between patients etc. Oh well, I am at their mercy. Also hope they don't hit my sciatic nerve. Sooner or later I'll run out of masks, absolutely none are available at public pharmacies, not where I live.
I live with my 96 year old father. It's just the two of us. We're going to get groceries delivered to us but I've been feeling so badly I haven't even been able to get on the laptop and make our order, just getting through the registration is daunting.
I've been feeling unwell and more pain than usual from the Faslodex, and the pain nurse gave me extra medication, only enough for five days, after which I am supposed to talk over the phone with her and see if it has helped. I took 6 mg more Hydromorphone CR in the evening and I think the pain was less. I'm only supplied 15 days of narcotics at a time, so it seem that I am always on the phone with the pharmacy ordering some drug or another. The extra drugs were delivered by two young guys from the pharmacy, I was sad to see that they didn't supply these guys with masks or anything. It is my belief that it is some of the lowest-paid workers who are being provided the least protection from the virus, especially in retail. There was a story in the NY Times about it, food preparers, bus drivers etc.
What a scary and horrible time we are living in. I apologize if I sound negative, just feeling the weight of all this.
Hoping you all stay safe, and as well as possible.
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Rabbit- Hahahahahahahaha. I needed that laugh this morning. Poor guy.
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Hi all, An update to note that a small trial out of Wuhan China indicates that HCQ (chydroxychloroquine) DOES seem to help mild or moderate COVID infections to resolve faster (link below). 25 of 31 patients improved more quickly than did the control group and none progressed to severe disase, whereas 4 in the control group did.
https://blogs.sciencemag.org/pipeline/archives/202...
As I mentioned before, the non-prescription (over-the-counter) supplement Quercetin, is related to HCQ and in the literature has similar but weaker anti-viral activity. It is also being studied for anti-cancer activity. I keep some Quercetin and zinc nasal spray nearby in case anyone in our house gets symptoms and worries they may be coming down with a virus infection. No idea if it works, but it feels good to have something. Some nurses blogs indicate they are taking it prophylactically, but I believe that it is not recommended for continuous use, and makes no sense if you are not being continuously exposed to virus.
There are some studies indicating it might dampen immune system hyper-activation (cytokine storm) that is a problem with severe patients but no data on that, and we will never have a study that says whether or not it is safe for cancer patients, for example. We are on our own, as is the case in so many situations.
In NYC, FDA has already approved HCQ for hospitalized patients awaiting good trial data on the basis that hopefully it does no harm, and all patients taking it are automatically enrolled in a clinical trial and so we should get meaningful numbers soon (?). Some hospitals are only giving it as last hope for very sick patients, but in the literature the mechanism of blocking virus entry suggests it would work best if given at first sign of disease, or at least before virus burden gets too high. Hope it works and cuts down on the hospital stays and need for ventilators, we could sure use some good news!
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Divine, you stated it perfectly!
Sending you a warm virtual hug...
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Cure-ious, just remember that pretty crappy data so far are causing runs on chloroquine and hydroxychloroquine. People with Lupus and RA can't get the drugs. There are going to be a lot of lupus flares in the hospital if we don't stop the hoarding.
It's as if someone decided that letrozole plus Ibrance would cure this and all the MDs prescribed it for coronavirus and their families (which is what's happening now). Ergo no breast cancer patient could get it. . .
We should have decent data in 3-4 weeks. They're enrolling into RCTs right now in Boston. It's totally possible that these drugs do work, and I hope they do, but the data are pretty iffy.
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I get my last loading dose of Faslodex tomorrow. (Yes, I took it for years, but after a year's break, it's a whole new world.) Today I got a call from a nurse at my oncologist's office. This is extremely rare. She asked how I was feeling and said the office had a minimal staff. She warned me that my MO would be out, that she and other staff would be masked and gowned, and that I should use an elevator with no other passengers. She said I might want to wear a mask. I responded I had none, that they were not available anywhere and, besides, Tony Fauci said people who weren't exhibiting signs didn't need them. She then suggested I wear a scarf over my nose and mouth when I got into an elevator.
Make no mistake, this woman is a wonderful person and I admire her, but I was left thinking "WTF?"
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well pajim, my argument was about the quercetin supplement and zinc, which if people did it would potentially alleviate some of the hoarding of HCQ (Quercetin is over the counter and has not been hoarded). If good studies are reported for HCQ, they will have to figure out how to deal with the demand, which is obviously a separate issue.
Apparently some good basic research on vaccines may be forthcoming, as something is coming soon in Nature and Bob Gallo was hinting at promising results on MSNBC tonite. These would be in the realm of basic science,and vaccine testing of doses and types will take a long time. Still hoping for remesdevir too!
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If the supplement is available go for it! It's just that I'm pretty annoyed at the people hoarding medicines and paper products (we have just enough TP at our house).
For instance, I can't get Tylenol anywhere around here. Nor at Amazon. If I really really needed it to turn my ocycodone in to Percocet I'm SOL.
We need to hold tight for a couple more weeks to get good data. The Italians are trying hard. The Chinese are finally in a position to analyze the data they have. Or at least look through their medical records.
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On HCQ, I have siblings on these for RA and they were told to hoard a month ago as supplies may run short, which may have actually caused a shortage if all patients were being told this. I got a month's supply in case I have a lupus flare. Given my history of autoimmune disease (and my family's) I would not be surprised if I were more susceptible to cytokine storms in general. Actually I have always wanted to take a short malaria prophylactic course as I do travel to where malaria is endemic but have been scared of side effects.
I was recently in New York where my brother was hospitalized at Sloan Kettering. At some point they were still allowing 1 visitor at a time per patient. I warned my SIL who thought she was safe in a cancer hospital that anyone could be getting infected outside if not inside. At some point the doctor advised us to be wearing a mask at all times inside and outside. Turns out there were already reported infections among both staff members and patients. So everyone, wear a mask even a cloth one!
I am back at home now and I still wear a homemade or ski mask to go outside. I cut holes on wide headbands for my ears or use rubber bands on scarves. You are up to 80% less likely to catch a respiratory illness in general with a mask. Even a cotton scarf could have 50% of the protection of a proper mask. Better than nothing. I double up my ski masks and wash in hot water after each use. I am thinking of ordering hepa filters as cotton masks are too flimsy to withstand wind forces while on my bike. I also need to protect my lungs from exhaust fumes.
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Hi all, on March 20th I was "accidentally" exposed to Covi19 by a client. She called me the next day to tell me she had been exposed by her 28 year old daughter who tested positive and then my county health dept called me on 3/25 to tell me that I had been exposed as my client had by that time tested positive (they don't tell you by whom but the city you were with the person). I was instructed to self quarantine for 14 days and today is day 14.
I had used some basic protection such as gloves, hand sanitizer, maintaining 6 ft distance etc. I sell real estate and she wanted to see a vacant home that was new on the market. I opened all the doors and we were in separate cars I work with a business partner so there were 4 of us present. The good news is that besides the one positive case, the other 3 of us have not come down with it!
I am very relieved that I didn't get it! Since 3/20 our state has really limited any meetings with clients and I am working really via video which is fine with me! I was not wearing a mask but have a friend making fabric masks and will get one today!
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Dear aprilgirl1,
Thanks for sharing your story. We hope that you continue to stay well. Keep us posted.
The Mods
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aprilgirl, I'm glad you got through 14 days quarantining and are okay. It sounds like, since you were around someone who tested positive for th virus, your precautions against getting the virus worked, and that is good to hear. You were social distancing, wearing gloves and using hand sanitizer. Adding a mask is a good idea. I will be using them if I need to go out, too.
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Here is a link to a paper that just appeared in Cell, reporting that a targeted drug has been designed by a private Austrian biotech that blocks the ability of Coronavirus to get into lung and heart cells. This company had previously carried out phase 1 and 2 trials testing whether this drug helps with damaged lungs, so they know it gets into patient cells and is safe. In the new Cell paper, they show it blocks coronavirus entry 1000-5000x. The company already started a short phase 1 trial in China to show it is safe for infected patients, and hopes to move quickly to phase 2. Sure hope it works!!
The drug is called ACE2, and is angiotensin-converting-enzyme-two, so maybe related to the ACE blood pressure drugs? Anyway it is supposedly a fragment of the ACE2 protein that serves as a binding site for the spike protein of the virus, and mediates entry of the virus into cells.https://www.sciencedaily.com/releases/2020/04/2004...
https://www.eurekalert.org/pub_releases/2020-02/ms...
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Dear God.
Just read a news article about a couple in my State that killed themselves for fear they had Coronavirus. Murder/suicide. Man and woman in their 50's. Single gunshot each. Relatives said they feared the virus. Autopsy showed negative for the virus.
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What awful news Candy. How fearful and desperate they must have been. Very sad and disturbing for those left behind.
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It’s a shame that someone goes off on the deep end like that, but imo, the person committing the murder/suicide because of coronavirus fears was already on shaky psychological ground. and may have even had a history of psychotic behavior.
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Or the cynical side of me says Covid was the excuse for a murder/suicide. Yes, I watch too much of Dateline.0
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I'm having mental shutdown from this lockdown. I spent 3 months failing chemos that I couldn't tolerate side effects. Then got on target therapy regime and anti depressant. Drugs ok and February was improving mental attitude. Started taking walks and socializing again. Then had a cold that put me in bed 1st week of March and been in lockdown ever since. I can't concentrate to read and just cooking a little and cleaning kitchen are about all I do. Showers and getting out of PJ's seems superfluous. Started a couple of cleaning out closets but quit. DH is depressed ( doesn't acknowledge it, but sleep or reads or plays game on phone 20 hours a day). I've told him that is depressing me as I feel like there's no reason to try if this is all that's left and he says he'll do something but doesn't. I don't even care what chore he takes on but just something. If I mention hiring help, like for outside rock, dirt or tree work he says no, either doesn't need it or he can do it. Won't even pick up dog poop or wipe kitchen counter with being asked twice. A friend died last week after brain surgery and he was all alone because of the virus, his wife couldn't even talk to him. I said if I have breathing problems again I'm not going to hosp. With a terminal illness and a DNR, they probably wouldn't bother draining my lung again and I have opiods and oxygen at home. I try not to breakdown to DH more than 3 or 4 times a week and can put on reasonable front for family and friends on phone. But I needed to vent. Sorry.
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I was pretty depressed when I saw MO in Jan and mentioned that I couldn't even look at ads for spring clothes as I didn't think I'd need any. She assured me I would. Ha! I was uncannily prescient, with this lockdown I haven't needed anything but pjs and sweatpants.
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nopink Me either. Jammies and house/ garden clothes. Plus, I've gained the Pandemic/Faslodex five. Wonder when we get to have our normal world back?
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I am trying to use up some of my jeans that probably need to go to the trash but I feel like I can wear around the house and farm until I actually have to see people again. Same on shirts. I am pretty much living in t-shirts. I am working from home so I still have that to do every day but I have tried to avoid the pjs and sweatpants during the day as I need to lose weight and my old jeans will keep me more honest. I'm pretty sure I would blow right through the Pandemic/Faslodex five pretty quick if I stayed in sweatpants.
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My cancer hospital finally texted me to tell me I was on the 12 week 'shielded group' which meant I am not to go out but can 'sit by an open window.' These letters/texts started coming out like 4 weeks ago. Since then I've BEEN to the damn hospital twice, the store, walks, etc. No one mentioned at my check up that 'oh yeah, you need to be housebound for the next 12 weeks.' Supposedly the databases are all whack-o and folks are getting them who shouldn't and folks who should aren't.
I don't have lung mets, feel like I may have already HAD this back in mid March in a mild form, and otherwise am healthy minus the damn cancer. I wash/spray everything coming into the house,wash hands throughout the day, spray down surfaces if they have come in contact with 'the outside' and walk in the evenings away from people. The complete housebound lockdown seems a bit extreme for only being on Ibrance.
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Ibrance can lower your wbc, giving more risk for infection. Mine are lowered, at the end of my cycle. MO says he’s not concerned. Guess if they tank he will be😂.
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Was on abraxane, but it was tanking my neutrophils. I was really responsive to Xgeva, and about 5 months in when I started showing some resistance, but no real growth. Then... corona. My oncologist was so concerned about me not being about to fight off the virus, he pulled me off the abraxane. No treatment at all. Took a month to find an alternative. A month of wondering which would get me first. Corona, or advancing cancer under no treatment. Starting Lynparza and caropentin on Tues.
I feel like I'm getting flipped in a snow globe constantly. Relief from some of the side effects so welcome, but then staying out of the cancer center for a month with no data - no cancer marker, no blood tests - to give insight into what was happening in my body so terrifying. Found out that a person that tested positive for corona was in the cancer center two days after my last appointment. It was only then that I realized they don't sanitize the waiting room chairs in between patients. Will now be bringing wipes to appointments.
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MW - I saw the nurses wiping down the chemo chairs in the ward last month when I was in for injections and it occurred to me then that gee,had they always done that or was this new?
Spookie- I had one low count, my first, and I was barely a smidge under. Since then been fine. However, they seem to keep changing the rules and guidelines daily/hourly so who knows. Im in for bloods/injections next week so let's see what the new rules are.
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