Are you getting cancer treatments during COVID-19?

Posted by Colleen Young, Connect Director @colleenyoung, Thu, Mar 26 4:46pm

Are you getting cancer treatments at the moment? What about diagnostic tests, like blood tests, CT scans, mammography, PET scans etc? Is your surgery going ahead as planned or postponed?

I’d like to hear from you. What is like being in treatment during the COVID-19 crisis? How are you doing?

Yes, votrient, tablet which I have tried before and it slow it down a little. Be at this since 2013 Mayo removed the kidney and they including all have been wonderful in helping with this

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@seaspray

Thank you Colleen for sending this! I just checked on my portal and they are still saying no masks unless you are sick! It is still worrisome that the 4 doctors and nurses I had contact with Monday & Tuesday for my brain radiation. did not wear masks. Tomorrow I go to an Orthopedic Podiatrist for an ongoing clogged sweat pore in my foot, and I will be wearing a mask. Thursdays I go back to Mayo for labs and then infusion and I plan on wearing a N90 the whole time.

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Don't believe everything you see on the internet…or portal. By all means, wear a mask whenever you leave your home. At Mayo Rochester, patients and caregivers alike are required to wear masks in treatment/exam rooms. Nurses and the entire staff wear masks all the time, even tho they have "self-tested" before coming to work and once during the day. I find that to be more accurate on the mask question than anything else. And good luck with the CART-T. My wife is in day 4 and so far, no side effects except extreme fatigue, which could be the result of nadar from chemo on days -5.-4 and -3.

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@ruttgerbay

Don't believe everything you see on the internet…or portal. By all means, wear a mask whenever you leave your home. At Mayo Rochester, patients and caregivers alike are required to wear masks in treatment/exam rooms. Nurses and the entire staff wear masks all the time, even tho they have "self-tested" before coming to work and once during the day. I find that to be more accurate on the mask question than anything else. And good luck with the CART-T. My wife is in day 4 and so far, no side effects except extreme fatigue, which could be the result of nadar from chemo on days -5.-4 and -3.

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@ruttgerbay – So glad the hear your wife is doing so well.

How is your stay at GOL transplant house?

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@ruttgerbay

Don't believe everything you see on the internet…or portal. By all means, wear a mask whenever you leave your home. At Mayo Rochester, patients and caregivers alike are required to wear masks in treatment/exam rooms. Nurses and the entire staff wear masks all the time, even tho they have "self-tested" before coming to work and once during the day. I find that to be more accurate on the mask question than anything else. And good luck with the CART-T. My wife is in day 4 and so far, no side effects except extreme fatigue, which could be the result of nadar from chemo on days -5.-4 and -3.

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@ruttgerbay – That is great to hear Mayo Rochester requires the use of masks. Too bad Mayo Florida does not and actually asks you not to wear them unless you are sick. This knowledge is from being there 2 days (over 4 hours) with my brain radiation team. I am just praying I have not been exposed. And yes, I will be wearing a mask when I go for my labs and infusion on Thursday whether they like it or not.

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@merpreb

@huronshores– Good morning. It must be extremely frustrating to have your doctor poo-poo a lot of what you ask him. Have you considered a second opinion? Does your doctor want to give you a new medicine or just a refill for the Hydroxyurea? I'm so glad to hear that you are following recent recommendations for protection against COVID-19. Make sure that you wear a mask and gloves. Most phlebotomists wear gloves, but I hope that yours has a mask on. If you have plenty of masks maybe bring one in case she doesn't?

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Thanks .. especially with all that is going on around the world .. I am lucky – so have to continue this course for now. Take care.

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Apparently Jacksonville is like a child–it doesn't listen to what Mother Mayo says (I know from where I speak…had three children). Perhaps their decisionmaking is related to your governor's decision-making on this pandemic. In MN, we've been locked down for many days… unlike our neighbors Iowa and the Dakotas, which our governor suggested they move away from us.

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@grandpabob

@ruttgerbay – So glad the hear your wife is doing so well.

How is your stay at GOL transplant house?

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The place is absolutely wonderful, as is the staff. I'm actually at home now..till next Sunday. My wife's cousin (from Rochester) has her doctorate in nursing and teaches nursing at Augsburg College in St. Paul, and is giving me a break. She's serving as my wife's caregiver … and I'm sure she's better at the medical aspects of it than me. This is literally my first break since the first week in Sept. (8 months) and after 24/7 together, I'm sure she's the one who feels SHE'S the one getting the break! (and on day 4, still no real side effects, other nadir from days -5 through -3 chemo)

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@merpreb

@marvinjsturing– Good morning Marvin. I'm glad that you took care of nausea. It even makes my stomach feel better! 🙂 Fatigue is one side effect that I bet 99% of everyone feels. I'm not sure why it makes us tired but it does. Do you know what kind of radiation you are getting? I don't remember. You are having wacky weather. I'm in southern NE and we have days in the '60s and then it's raw and windy- constant wind- and it dips into the 40's and 30's at night.
Have you considered getting something to tape your show? That would drive me batty.

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@merpreb I asked today and was told that I am getting photon radiation. I am half way through my treatments now. Last week the radiation techs started wearing masks. Today, the ladies at the front desk were also wearing masks.

We do have tivo and I record the shows that I really want to see.

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@merpreb

@devehf– Good morning Dave. If a person wears the right mask properly it might help to stop any fluids from getting into mouth cavities. Wearing a mask is for protection from others if you are well and for protection for others if you are unwell. I would much rather err on the side of caution than take a chance.
Here is a video about putting a mask on and then gloves:

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Thank you so much for these videos!! I am a nurse, but the general public may not know the general rules/train of thought, about clean v. not clean!

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@marvinjsturing

@merpreb I asked today and was told that I am getting photon radiation. I am half way through my treatments now. Last week the radiation techs started wearing masks. Today, the ladies at the front desk were also wearing masks.

We do have tivo and I record the shows that I really want to see.

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@marvinjsturing– Good morning Marvin. My second SBRT was with Photon Radiation too. I was very tired. It takes a full 6 months before you will jump back int he rink again, but it's well worth it!

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@merpreb

@w5wiggi– Good morning and welcome to Mayo Connect. You've really been through a lot! Side effects from treatments that are so bad that they have to be stopped are really the pits. I'm really glad that your lung function is once again good! Is your doctor thinking of trying another chemo treatment?

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yes,when this virus is over at my request

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In case anyone has an upcoming visit to Mayo Rochester, I thought I would share my experience today with on site visit, phone appointment and video visit today.

I had to go in for blood work and ECK on site. I asked to have scheduled at Baldwin building in Rochester because I thought they would not be as busy. I arrived at 6:45 AM. As I enter building, there was tables where I had my temperature taken. It was OK, so proceeded to next table. They verified I did have an appointment and then asked series of question if I had any symptoms of virus or had been in contact with anyone who had been test positive. I passed test, and proceeded to check in desk. I was only patient there. At 6:45 AM you might think that is normal, but this desk is usually very busy at that time because the hours are set up for locals who need to do labs prior to going to work. I have to go back in tomorrow for more labs and an infusion so will see what like be in another section of Mayo.

I was in and out clinic withing 30 minutes.

All employees were wearing masks.

I went home and few hours later had phone call with oncologist. Everything went find, he order some addition appointment and 15 minutes later they showed up in Mayo's portal.

In afternoon I had a video appointment scheduled with another doctor. Yesterday I received instructions via portal, along with a number I could call to verify / test video connection. I called number, was on hold for 30 minutes and gave up.

I have attached the file from Mayo on video appointments.

Mayo uses Zoom software to do video appointments and I had used ZOOM before, so I made sure it was all set to go on my laptop.

At designated time, you logon to Mayo Portal, go to appointment schedule, select detail and there is button to start appointment. A coordinator comes on, verifies everything is working correctly and then you wait for dr to connect. Unfortunately, my dr had technical problems, so he ended up calling me directly.

So, at end of day I accomplished everything that I would of accomplished if I had spent the entire day at clinic.

Laurie

Shared files

video appt (video-appt.pdf)

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@roch

In case anyone has an upcoming visit to Mayo Rochester, I thought I would share my experience today with on site visit, phone appointment and video visit today.

I had to go in for blood work and ECK on site. I asked to have scheduled at Baldwin building in Rochester because I thought they would not be as busy. I arrived at 6:45 AM. As I enter building, there was tables where I had my temperature taken. It was OK, so proceeded to next table. They verified I did have an appointment and then asked series of question if I had any symptoms of virus or had been in contact with anyone who had been test positive. I passed test, and proceeded to check in desk. I was only patient there. At 6:45 AM you might think that is normal, but this desk is usually very busy at that time because the hours are set up for locals who need to do labs prior to going to work. I have to go back in tomorrow for more labs and an infusion so will see what like be in another section of Mayo.

I was in and out clinic withing 30 minutes.

All employees were wearing masks.

I went home and few hours later had phone call with oncologist. Everything went find, he order some addition appointment and 15 minutes later they showed up in Mayo's portal.

In afternoon I had a video appointment scheduled with another doctor. Yesterday I received instructions via portal, along with a number I could call to verify / test video connection. I called number, was on hold for 30 minutes and gave up.

I have attached the file from Mayo on video appointments.

Mayo uses Zoom software to do video appointments and I had used ZOOM before, so I made sure it was all set to go on my laptop.

At designated time, you logon to Mayo Portal, go to appointment schedule, select detail and there is button to start appointment. A coordinator comes on, verifies everything is working correctly and then you wait for dr to connect. Unfortunately, my dr had technical problems, so he ended up calling me directly.

So, at end of day I accomplished everything that I would of accomplished if I had spent the entire day at clinic.

Laurie

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@roch Thank you for an "in the trenches" report! Nice to hear precautions were being taken.
Ginger

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Thanks for the details Laurie! Mayo here in Florida called me yesterday regarding my appts tomorrow. Same 3 questions as usual. I asked if they are wearing masks and was told yes! FINALLY!!! Have labs, come home and have phone appt with PA and then go back for infusion. Hopefully all goes smoothly as I will be wearing my mask!

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@seaspray

Thanks for the details Laurie! Mayo here in Florida called me yesterday regarding my appts tomorrow. Same 3 questions as usual. I asked if they are wearing masks and was told yes! FINALLY!!! Have labs, come home and have phone appt with PA and then go back for infusion. Hopefully all goes smoothly as I will be wearing my mask!

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@seaspray, if you don't mind, could you please post a similar report about your experience at Mayo FL as @roch Laurie did for Mayo MN? I'm sure fellow cancer patients would really appreciate it.

Thanks so much, Laurie!

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