Are you getting cancer treatments during COVID-19?

Posted by Colleen Young @colleenyoung, Mar 26, 2020

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?

@becsbuddy

@monroeed sounds like things are a bit tough for you now so, please don’t think you have to do everything. Your boyfriend has a long way to go and if you wear out, he’ll be high and dry. I don’t think that what he wants, or you either. I agree with @mom23boys when she said to try Walmart delivery. When you have some time, sit with him and make a list of every possible thing you can think of. Put the list on the refrigerator and he can mark things that run out. Then, get on line and put in an order with Walmart (or whatever grocery you shop at). Will you try this?

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Thank you, Ginger for your appreciation. You know what suffering multiple health issues meant. But you learned how to enjoy life and beautify your surrounding. You are very special. God bless you.

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@colleenyoung

I'm relieved to hear that most cancer procedures, testing and treatments are going ahead as planned or with some accommodations. As @pameladstone said, "cancer is not going to wait for the virus to pass."

Several of you mentioned tele-visits and phone follow-ups. Do they make you feel comforted that you don't have to travel to the hospital for care or concerned whether they will be sufficient or thorough enough?

For those of you who have had some procedures postponed, what concerns might you have?

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My concern is about precautions, not about postponement. I check in with Mayo's hematology doc twice a year for guidance. But my chemo treatments are done locally, a three hour drive from Mayo. I get infusions for 7 days on, then 21 days off. Those 7 days are frightening.

My local oncologist has a very loose disinfecting program. People go in and out the door, touching on door handles, the door, the door jamb – then they fail to use hand sanitizer, even though there is hand sanitizer in sight. There's no one watching to make sure they sanitize. The front desk lady – when she has a chance every hour or so – sprays and wipes door handles and the countertop at the window to her desk. With the same cloth she keeps laid on top of the spray bottle between wipedowns. There are no signs or notices to tell patients and caregivers exactly how to conduct themselves to help prevent virus spread. Nothing.

No one sanitizes the chair arms or the toilet rooms. Patients and caregivers sit in the waiting room, sometimes pull their masks down for comfort; no one is making sure they wear them properly or keep them on. Caregivers are not allowed into the infusion room where I'm told sanitizing takes place between patients; but seeing how the waiting room is handled, I have doubts about the procedure.

I am frustrated. I wear a mask, a shield, disinfectant wipes on my hands, a bottle of disinfectant spray in my pocket which I use every time I touch something with my wipe-covered hand. I spray my shoes after leaving, before I get into my car.

Imagine what would happen if I told the doctor all he's failing to do to prevent COVID-19 virus spread. I'd never have a decent relationship with him again, no matter how nicely I present this.

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@5qdeletion

My concern is about precautions, not about postponement. I check in with Mayo's hematology doc twice a year for guidance. But my chemo treatments are done locally, a three hour drive from Mayo. I get infusions for 7 days on, then 21 days off. Those 7 days are frightening.

My local oncologist has a very loose disinfecting program. People go in and out the door, touching on door handles, the door, the door jamb – then they fail to use hand sanitizer, even though there is hand sanitizer in sight. There's no one watching to make sure they sanitize. The front desk lady – when she has a chance every hour or so – sprays and wipes door handles and the countertop at the window to her desk. With the same cloth she keeps laid on top of the spray bottle between wipedowns. There are no signs or notices to tell patients and caregivers exactly how to conduct themselves to help prevent virus spread. Nothing.

No one sanitizes the chair arms or the toilet rooms. Patients and caregivers sit in the waiting room, sometimes pull their masks down for comfort; no one is making sure they wear them properly or keep them on. Caregivers are not allowed into the infusion room where I'm told sanitizing takes place between patients; but seeing how the waiting room is handled, I have doubts about the procedure.

I am frustrated. I wear a mask, a shield, disinfectant wipes on my hands, a bottle of disinfectant spray in my pocket which I use every time I touch something with my wipe-covered hand. I spray my shoes after leaving, before I get into my car.

Imagine what would happen if I told the doctor all he's failing to do to prevent COVID-19 virus spread. I'd never have a decent relationship with him again, no matter how nicely I present this.

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@5qdeletion i am so sorry that you’re feeling uncomfortable when you see the oncologist. Have you asked to speak to someone in the office to express your concerns? I’m sure many of the others feel the same as you. Please try to bring it up with the doctor and/or the office manager. Let me know what they say. Becky

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@mom24boys Just wondering how you’ve been doing. Are you getting your doctor visits OK? I read where you said that your 1year checkup wasn’t good—how are you coping with that and isolation? Becky

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I'm concerned about your local oncologist as well. This does not sound like good health care practices during COVID to me. I definitely would speak to someone in the office be it there office manager/ or the oncologist him/herself. My family Doctor even called me not to attend any of my lab appointments until further notice. My oncologist is going to do a telephone interview at the end of the month rather than having me go to the cancer clinic.– this is all fine with me as I have very low immune system. Glad you are taking all the precautions even if they aren't. Stay safe.

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@5qdeletion

My concern is about precautions, not about postponement. I check in with Mayo's hematology doc twice a year for guidance. But my chemo treatments are done locally, a three hour drive from Mayo. I get infusions for 7 days on, then 21 days off. Those 7 days are frightening.

My local oncologist has a very loose disinfecting program. People go in and out the door, touching on door handles, the door, the door jamb – then they fail to use hand sanitizer, even though there is hand sanitizer in sight. There's no one watching to make sure they sanitize. The front desk lady – when she has a chance every hour or so – sprays and wipes door handles and the countertop at the window to her desk. With the same cloth she keeps laid on top of the spray bottle between wipedowns. There are no signs or notices to tell patients and caregivers exactly how to conduct themselves to help prevent virus spread. Nothing.

No one sanitizes the chair arms or the toilet rooms. Patients and caregivers sit in the waiting room, sometimes pull their masks down for comfort; no one is making sure they wear them properly or keep them on. Caregivers are not allowed into the infusion room where I'm told sanitizing takes place between patients; but seeing how the waiting room is handled, I have doubts about the procedure.

I am frustrated. I wear a mask, a shield, disinfectant wipes on my hands, a bottle of disinfectant spray in my pocket which I use every time I touch something with my wipe-covered hand. I spray my shoes after leaving, before I get into my car.

Imagine what would happen if I told the doctor all he's failing to do to prevent COVID-19 virus spread. I'd never have a decent relationship with him again, no matter how nicely I present this.

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@5qdeletio- Good morning. This situation is very bothersome. I agree with both Becky and @fismom2018 that you might want to talk to the office manager about this. I'm sure that they are aware of what they aren't doing. I'm wondering if you should contact the doctor who recommended him and talk with her about this and see what she says. How long have you been in treatments with this particular oncologist?

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@5qdeletion when is your next 7 day cycle of chemo?

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@monroeed

My boyfriend is receiving his blood tests and chemo infusion every 2 weeks at Kaiser Santa Clara w/out interruption during Covid 19. He’s had a kidney, spleen and part of his pancreas removed; the current chemo treatments are related to the pancreas. After he completes 3 more rounds of chemo they will be looking at surgery for the nodules on his lungs. I’m grateful that my boyfriend has a wonderful oncology team for his care. Unfortunately, his immune system is very compromised and he relies on me for grocery shopping (we don’t live together) and I work FT in a healthcare clinic. I realize my boyfriend’s situation is critical but the waiting in lines and his complaints about what I’m able to buy at the store are disheartening. Fortunately, I have a therapist I’m able to see 1 x per month, but do have times when I feel overwhelmed. Thank you for this forum where I can air my feelings.

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Hello @monroeed,

I noticed that your last post was some time ago and I was wondering how you and your friend were doing in dealing with his cancer diagnosis and the emotional roller coaster this has put you on. How is his treatment going? Have you been able to find enough support for yourself during this time of stress?

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I have reduced my labs from weekly to monthly to reduce my exposure. My labs have been good so I have adjusted. I continue my 90day scans and see my local Oncologist. I am a liver transplant recipient and avoid as much contact as possible. I need some dental work but have delayed it until I feel safer.

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I am about to start my cancer treatment and it really scares me. I realize the chemo breaks down your immune system and right now I have a good immune system but am terrified of what is about to happen. Any words of wisdom?

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Hello @sqdncnws – I see this is your first post.

Welcome to Mayo Clinic Connect, an online community where people can share experiences and ask each other questions about any health issue.
We're not medical professionals who can offer medical advice. We are a group of individuals that can hopefully answer some questions and provide some information from personal experience.

I can relate to your apprehension. Undergoing cancer treatment is not easy. I am a cancer survivor, (Large B Cell Lymphoma) I underwent about twenty chemo infusions. Five different types of chemo was used up to most harsh.

So, you are correct, over time the chemo does wear down the immune system. It has been over two years since my last treatment and my system is still compromised. To stay safe, I restrict my exposure in public, wash and sanitize my hands and never touch my face.

I am assuming your oncologist has reviewed the possible side effects with you. Heed these, in my case, i believe I had all of them with the exception of mouth sores. On the up side, there are excellent medications to combat many of the side effects to a great degree. More importantly the treatments can and do work.

Eating became very difficult for me. (Food simply became non-appealing, tasteless or worse) Plan on eating small amounts more frequently throughout the day/night.

Try to be active, plan some kind of regular exercise, I found this to be most beneficial. I always had someone tag along with me to give me those words of encouragement to keep me gong on my walks.

Are you currently physically active?
When is your first chemo infusion?

I know i just touched on a couple of things however, continue to reach out on Connect and ask questions, me and others on Connect will be more than happy to share experiences with you.

Bob

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@sqdncnws
Well, if it's of any comfort to you, chemo (Taxol in my case) didn't seem to affect my immune system at all and never gave me nausea. I did keep exercising (a mile/day) during the entire three months, never became anemic, and ate whatever seemed to suit my fancy. I did have to stop the Benadryl after the first infusion as it was keeping me wide awake for days, and the first week, I got constipated. For the former, I took a mg/day of melatonin at bedtime, and for the latter, I bought some Smooth Move tea on Amazon which corrected the situation overnight. I also ate a 1/2 cup of applesauce each day which seemed to keep my innards in good shape. And, I took a 50Kmcg of Biotin each day which got my hair growing back, thick and silky.

I guess what I'm trying to say is that each of us is going to have or has had an individual experience. I would advise you not to anticipate a disabled immune system… you may be fine. The oncologist or his/her PA will give you a prescription for nausea which you may not need. If you get mouth sores, ask the PA for a prescription for Magic Mouthwash (which you can only obtain at a compounding pharmacy). The PA may know where one is close to you. You may want to get some Smooth Move tea, applesauce, and melatonin ahead of time, just in case, and try to exercise each day (which also helps with sleep and bowel regulation). You will find that your oncology team is prepared to address any issue which you may encounter.

Bring snacks (like those tangerine Cuties and almonds), water, napkins, and a good book for your infusions. You'll be there a while.

The other thing which I found helpful was having an Amazon Prime account where I could order whatever and have it in about 24-48 hours without having to shop outside for it. I was surprised how cold my head was (day and night) when I lost my hair and I found some wonderful soft knit chemo caps there in various styles and colors… that kind of thing. Before you know it, chemo will be behind you and you'll be focused on styling that beautiful, new head of hair. And, don't forget, your friends on MayoConnect always are here for you when you want to vent, comment, or ask questions!

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