Are you getting cancer treatments during COVID-19?

Synopsis of my visit to Mayo/Florida today: I wore my N95 mask and was not taking anymore chances as I felt I had been possibly exposed March 30-31 during brain radiation because no one wore masks. Greeted by 5 people wearing mask's and asked the usual questions. One came over and took my temperature by a new gadget (new at this Mayo) that read your temperature without touching you while held to your forehead. The place seemed empty until I got off on the 2nd floor. Whooa, lot's of people waiting to be called in for labs or visits. Waited 15 minutes to get called back to have labs drawn. Left the hospital and came home for the 2 hour break. Had a video conference with my PA which did nothing to ease my pain in my side or the pain in my chest. They cannot listen to you breathing or feel for lumps. But, at the same time we all need to keep as much distance as possible. I then drove back to a almost 1/2 empty parking lot. Checking back in to the same area, not as many people but all wore masks. Waited about 15 minutes to get called back. Greeter wore a mask and walked me to my room. Nurse came in with a mask on and asked me the same questions again. Asked her about some other nurses that I am use to seeing (been going almost 6 years) and was told many were sick or quarantined. No surprise there but it saddened me as it was so obvious to me that this was going to happen. Another nurse came in to sign off on my drug without a mask. She said, "sorry, I forgot my mask but we are 6 ft apart". If I had not had my mask on I would of said something not so nice. Had to wait 45 minutes to get my infusion and then another 45 minutes to do the infusion, do bp and get unhooked. When I left at 4:30 there was no one in the waiting room.

I feel that Mayo did not provide the staff with masks when it was deemed necessary, at least a month ago. I will probably never find out the true reason but I have heard the theories. Get to do this again (hopefully) in 3 weeks!

Cab - are you at Mayo? If so see my last response. I do not know about gowns during the scan as they were not using either when I had my scans last month.

I recently had to find a lab in my area for blood test. The hospital Center in nearby city recommended this, due to increased Covid19 threat and to spare all concerned. Lab in our small rural town was closed but I managed to find lab in nearby small town. They were able to give me an appointment time, Hematologist faxed them a requisition and I went to have the test. I found the lab attendants were very appropriately masked, gowned and wearing face shields etc. I was given a mask (I inquired in advance if I should wear one and they preferred to give me one there).The test was done, Hematologist has results and Dr phoned me with directions for prescription of Hydroxyurea continuing. I feel this is a reasonable alternative during these uncertain times. Stay home and stay well. Take care all.

@seaspray- Hi. I'm glad that your CT scan and infusion went smoothly. I hope that in 3 weeks you will be well and able to go back for more! After a day like yours, I'm done in the next couple of days. I travel by train 1 hr both ways. Does this tucker you out?

Would it be possible to move this entire discussion about treatment during COVID 19 elsewhere, in to separate discussion?

@merpreb - I did not have a scan yesterday but yes the infusion went smoothly. I am very fortunate to have NO side effects from my infusion. I came home, walked the dog a mile and made dinner!

I'm going to write here about our good friend who has Cholangiocarcinoma and has been treated at UC San Francisco and Mayo. He needs frequent (every 5 weeks) stent replacements with ERCP and UC San Francisco has been slow to schedule. He will be going to Mayo in Rochester next week for this which he and we hope will be one of the last ERCP before his liver transplant. He is on the transplant list at Mayo. Mayo has not cancelled or delayed any treatments for him. I am frightened for him because he must travel to Mayo in Rochester. But, quite honestly, the alternative of no travel, thus no treatment is worse. We are encouraged by Mayo's responsiveness to him.

@colleenyoung Treatment during this COVD19 has continued with regular appointments of blood draws, oncology office visits, and CT scans. However, Mayo Clinic in Rochester was eerily empty in comparison to a normal visit. My oncologist let me know I may not see him but another oncologist on staff when I come for treatment next month. Mayo is dividing the staff and doctors into teams and rotating work schedules so it is less likely that an entire specialty field becomes infected. Clinical trials are on hold too which worries me regarding possibly limiting options when I need a treatment change - surgery, radiation, etc. likely in May. 3 out of 4 of my last scans showed progression and if it continues in May, I ve been told we have to consider another treatment. I'm on my 3rd, 4th tier of treatment - surgeries, radiation, hormone therapies, new immunotherapies, etc. and my list of options continue to grow smaller.

However, one of the hardest things for me is deciding to travel from out of state at this time and risk exposure and the extra stress that comes from likely a treatment change in the midst of this! I have a rare cancer that cannot easily be treated or decisions made locally with a very complicated medical history. I have several high risk factors for COVD19. My anxiety over the cancer has ramped up even further with COVD19. Because of complications, I don't see any relief in site for complicated risky travel, treatment options and systems being complicated, possibly limited treatment in priority or focus, and living the future in hiding until we come up with treatments and a vaccine for COVD19.

If you're diagnosed or in treatment now, I feel it's a very difficult time on top of all the hurts that come with cancer. Don't be afraid to ask someone for help or just talk. I've been guilty of this. Everyone is coping with their own fears of COVD19 so I find myself not wanting to bother anyone. But find that someone who can listen, we're not alone in this. ❤

I was diagnosed with CC 3 years ago. Your status is familiar to mine as I didn't have a match so we had to wait for a deceased donor and was transplanted in June of 2018. Thruout this journey I had 12 ERCPS and I know what you are and will be going thru. You will be taken care by the elite in healthcare. I offer you much hope and strength as you navigate this critical challenge. God Bless you, Happy Easter..

@leannn You have so much to be concerned about, and you're right, Mayo Connect is a great place to come and vent. We are all on our health journeys, and who else can comprehend our hesitations and worries, than fellow patients?! Drop by at any time and let us know how we can help you, even having a virtual shoulder to lean on. You're not alone, here.
Ginger