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Anyone experiencing delays or cancellation of treatment due to Covid-19?

Lovekitties's picture
Lovekitties
Posts: 3343
Joined: Jan 2010

While I personally am not in treatment, I did read that our largest oncology center has closed for at least 2 weeks due to 2 patients and one staff testing positive for Covid-19.  Their press release said all patients would be called and treatment alternatives would be discussed based on their particular circumstance.  I don't know if there are other facilities where they might be treated, but it certainly would not be at our hospital which has numerous cases of the virus.

Prayers for all of you for your health and safety during this crisis.

Marie who loves kitties

Tom M.
Posts: 129
Joined: May 2019

Not here. I just completed 5 of 6 chemo sessions. My blood work has been staying good thru it all. Stay healthy.

abrub's picture
abrub
Posts: 2130
Joined: Mar 2010

My dr wanted to minimize risk of my getting the virus. I got it and was mostly asymptomatic quarantine ends today, but chemo won't resume   until May at the earliest. 

Tueffel
Posts: 80
Joined: Feb 2020

Hey abrub,

How are you now? And how is your family? If your quarantine ended that means you are recovered now? Probably immune?

I hope your husband and daughter also get better

abrub's picture
abrub
Posts: 2130
Joined: Mar 2010

I feel good and have been to the supermarket, but husband and daughter, while considered to be over the virus, are  still coughing and quite weak. I'm caring for them. Hoping we'll all be back on feet soon. 
Alice

Tueffel
Posts: 80
Joined: Feb 2020

My parents live in the North of Germany. This state has 2000 cases but only 900 active. The hospital where the chemo is, does have patients with corona. Apparently 2 are intubated. From now there are no changes. Last week was my dads last chemo. Next week comes no4. 

But I know how other facilities will manage it but for now most are just preparing. It is not that serious and hopefully stays that way

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

I feel so so very sorry for people in active treatment.  After 15 years of testing and treatment I cannot imagine having the extra stress of this pandemic.  I still do CEA's every six months and CT scan once a year.  i made the decision this month to skip the CEA bloodwork. Just couldn't face negotiating the hospital and the lab...

sending love to all, maggie

jandjinco
Posts: 4
Joined: Apr 2020

I have just finished a 6 month treatment  3 weeks ago and was due to have my follow-up with onc this week which is now going to be a phone call. I don't know that a phone call will do it as most times I am stream of conciousness with my questions. When am I going to fully function with hands and feet? When does the knot feeling in my butt go away? I can't sit straight or walk straight. Working from home for now. 

Sorry, I digressed, my center is still treating patients that are must haves, but spreading times and charirs. Guess I just finished in time.

 

John 

Trubrit's picture
Trubrit
Posts: 5149
Joined: Jan 2013

You write out your list of questions and ask every single one of them, just like you were sat right there in the Doctor's office.  I would suggest a little hand held tape recorder - i use them all of the time, becasue I cannot remember anything anymore - and tape the phone call, or, sit with your computer and if it videos, video yourself talking to the Doctor and then you can replay it and hear his/her answers to your questoins.  I think by law, you have to tell them you are recording the call, just so they know and you are covered, legally. 

Good luck at your appintmetn and I hope all goes well. 

As for the hands, feet and butt. I can tell you from experience, it does not go away overnight. Months, sometimes years. I am six years out of treatment and I sitll have neuropathy in both hands and feet.  If I am not careful with food, and get constipated, then that knot feeling comes back.   If I may suggest, you could start a new thread here  Forum Home Page    and aks the members there expreience with these and other issues you may want to hear about. Sometimes the patients have more answers - or the right answers - than the Doctors. 

Welcome to the forum. 

Tru

SnapDragon2's picture
SnapDragon2
Posts: 279
Joined: Nov 2019

Hi John,  I was expecting to have a phone follow-up with one of my surgeons and had all my questions ready, had my husband there to record everything as it would be on speakerphone.  At last minute his clinc was set up for video apts. You are lucky to finally be done with chemo.  I know that has to be a relief on several levels considering what it is and covid19.  Congrats to you!  

AH,,, just reading what Tru wrote!!!!  So ya, what she said, lol

Joan M's picture
Joan M
Posts: 406
Joined: Oct 2016

Not sure how I'm supposed to benefit by doing a video appointment if I need chemo anyways. 

I was at Mayo for three weeks and ws able to get the radiation treatments,  They were still doing chemo there when I was there but I didnt get chemo at Mayo.  

I just got back home and found out about the video appoiments here Friday afternoon, so wasnt able to get a straight answer as to how I'm supposed to get IV chemo yet.  

abita's picture
abita
Posts: 792
Joined: Dec 2017

Not sure if same for you, but my oncologist visit is on phone now, and I still go in for infusion and bloodwork. The idea is to limit how many go into the facility so as to minimize possible spread. His asst, nurse, etc are all wfh too. Nurses, receptionist, and intake bloodwork people are only ones there. Well, and patients 

Joan M's picture
Joan M
Posts: 406
Joined: Oct 2016

I had an allergic reaction to oxalilplatin and almost died in January.  I most likely would have died if the doctor hadnt been ther to tell the nurses what to do to counteract the reaction.

Basically the one with the knowledge and expertise  is the only one missing.  Something wrong there.  Especially when cancer patients are most at risk.  

abita's picture
abita
Posts: 792
Joined: Dec 2017

I think they can contact him as quickly as if he was in the building. Truth be told, he may even be in the building. I only know I spoke to him on the phone. 

I had a reaction to oxaliplatin too back in early 2018. Ended up having rapid response team take me to emergency. It really sucked. Now I know if I start reacting, hit that clip to stop the flow. I am fine with not seeing him in person. I am terrified of getting covid-19 

Twinzma
Posts: 226
Joined: Jan 2018

My husbands CEA is on the rise again so his oncologist called in a CT stat. They scheduled in Last Tues, told him to arrive at 11:30 for the contrast and they would do the CT at 2pm. He arrived checked in sat down alomost and hour went by when he asked where the contrast was...He was told it was on the news this morning that the hospital will no longer being to contrast so patients would not be sitting around waiting...UMMMM could have told him THAT when he checked in early or had called him to tell him to arrive later. SO he did get it just with IV only. No sooner did he get home, the call came in that his infussion center was closing, staff being laid off becuase they are NON ESSENTIAL and he had to go elsewhere for treatement. I would love to know how a infussion center is "not essential".....UGH so he is going to a facility in the middle of downtown Orlando where most of the COVID cases are here and are being treated! Doesn't make sense to us!!!! 

 

Trubrit's picture
Trubrit
Posts: 5149
Joined: Jan 2013

Cancer patient's lives are now considered non-essential.

That is just pitiful. 

I am glad you found a hospital that would treat him.  If it were at all conviniet, I would tell the other place, to take a hike, when this is all over. 

I hope all turns out well with the CT results, though he really could have done with the contrast. 

Tru

Twinzma
Posts: 226
Joined: Jan 2018

Very minimal growth, but the CEA is rising so next month he begins another 12 rounds of Folfiri. The success on Opdivo was amazing, just wish they started it earlier it probably would have been our answer. His CEA at the start was over 1100 and dropped to 22. The main tumor in the colon is not even visible anymore, it's a couple of the mets in the liver that has grown...Many though are gone. He's doing well, just the ulcers again are his nemesis and cause him all the pain.  They want him to have another EDG but that's on hold too with COVID...Can't win. 

SnapDragon2's picture
SnapDragon2
Posts: 279
Joined: Nov 2019

Wow!!!  That is crazy scary...I feel for you guys.  Chemo and Covid19 is terrifying!

I thought I was safe going for infusions at location I chose but it is now the hotspot.  They told me for now chemo is still on.  I have 3 more rounds after this one.

Capox Dude's picture
Capox Dude
Posts: 77
Joined: May 2019

Is the only word for closing infusion centers.    They bounced my port flush a month due to this, and while I do not relish having it replaced if it can't be un-blocked due to the wait, that is NOTHING compared to a person not being able to get treatment.   Glad you were able to find treatment.

th4rs
Posts: 28
Joined: Dec 2019

So I can relate Doctor seems to see me in person every other week. They state he is at home or were ever not in the faciltiy.  I had the experience of having a new sore on my left foot proop up so no one NP or Docotor was arround to visualize this but cannceld chemo anyway.  I go back next Tuesday to see if they have healled (blisters on the feet)  This not seeing a doctor or even a person  when somethng new is present is un nerving.  

 

Thanks 

 

Robin 

myAZmountain's picture
myAZmountain
Posts: 329
Joined: Apr 2018

I have an appointment with Oncologist here at local hospital next week, they are running the cancer clinic normally here in Northern AZ--and any lab or other tests are designated non-elective so they are getting done wihtout problems. Feel very fortunate. Of course the Sherriff here announced he would not enforce any restrictions placed by the Governor so there is that lol.

Gail E's picture
Gail E
Posts: 19
Joined: May 2020

I was told that if they run short of PPE they might put IV chemo on hold and offer oral chemo options. I don't think it's going to happen, though.

SnapDragon2's picture
SnapDragon2
Posts: 279
Joined: Nov 2019

They have nothing but homemade masks still at center I go to.  It is very stressful for them and me!!!  Where I go is state HOTSPOT...just sad!!!

abita's picture
abita
Posts: 792
Joined: Dec 2017

Homemade masks at a cancer facility!?! That is crazy.

SnapDragon2's picture
SnapDragon2
Posts: 279
Joined: Nov 2019

I asked a nurse 3-4 wks ago why they still haven't gotten proper masks.  She just looked at me and said "don't know."  My stress level is so high when we get close to the center and my heart pounds when I go in.  I wear a mask w/bandana over it, floppy hat and safety glasses.  They wear "cute" homemade masks.  If they go on strike for improper equip. I'm in trouble with finding a new center right now.

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