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COVID-19 effects on cancer patients

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

I am just wondering if anyone could share how they are dealing with the confusion and disruption in medical care caused by the COVID-19 situation. We represent an at risk group. Since January 2019 I have been in hospital twice for pneumonia so I am a bit concerned. This year I am feeling much better. I had to cancel a trip to UK, Portugal and Israel and generally avoid other people. I got a shirt that says "I like coffeee - and maybe three people". This is especially true for grandkids, the walking germ factories they are. I miss them. Yesterday I had to convert my appointment with an onc to telephone call. Is anyone else being denied office visits?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3450
Joined: May 2012

One cousin (50y/o) was diagnosed with Stage 4 lung cancer two months ago, has yet to receive treatment, due to logistical slowdown.   A niece in Texas (also about 50) was diagnosed with colorectal, metastatic to the breast, and got in to MD Anderson right away and has been getting timely care.  The main medical limitation that I am seeing is that there is no cure or treatment for stupid yet.

Evarista's picture
Evarista
Posts: 287
Joined: May 2017

No doubt.  My clinic sent me a "Don't call us, we'll call you" message and is postponing routine visits for the time being.  Don't have time for a long post but wanted to make people aware of some resources available from LLS. 1) a COVID-19 Telephone/Web Program happening live tomorrow (03/26/20).  Register here: https://prodadminportal.azurewebsites.net/Register/Registration?programId=38521en&clientId=1007&isPreRegistration=false

They have some other links they've sent, including a chat feature (I have not used) but I cannot post them here, unfortunately. Probably because they contain phone numbers, but private message me if you want. Be well.

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

While serious, this situation is greatly overblown - IMHO. So far COVID-19 pales in comparison to the normal flu - H2N2. In a typical year H2N2 kills about 36,000 Americans. This year it is on track to take 50,000 Americans. Worldwide it kills several million each flu season. I think its a mistake to shut down areas where the COVID-19 virus is not a threat. People at low risk should go to work while the vulnerable are protected. The WHO estimates 80% of those infected have few or no symptoms.To me this means there are millions walking around with COVID-19 who don't even know they have it. The cat is already out of the bag so why destroy our economy and way of life? Protect those who need protection - the rest go back to work.

Jus sayin'

yesyes2
Posts: 592
Joined: Jul 2009

I havn't written in a while.  I live on the central coast of California and our entire state is on Sheltering in place.  I am glad my state is handling it in this way.  Both my husband and I are in our seventies and I am currently battling 2 cancers and a host of autoimmune diseases.  Since late October I've been dealing with metestatic breast cancer along with a blood cancer, not NHL, although I am a NHL survivor.  I was to start chemo for the MBC 2 weeks ago as prior treatment did not work.  I'm scared to death to begin this chemo.  All my doctor appointments with Stanford, UCSF and local Hemo/onc have been by telephone. I'm fearful I'll get sick with the chemo and can not go to the ER because of the virus.  Infact I've been told to avoid the er.  So really don't know what to do.  In the last two weeks I've been outside twice.  Once for an Onco appt and a week ago to have blood work for my blood cancer.  I'm feeling pretty much like I'm on my own.  Not asking for help just sharing where I currently am.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3450
Joined: May 2012

yes yes,

Sorry about your terrible dilemma.  All Cancer Centers have inpatient accomodations.   It sounds like in the current environment, you should certainly qualify.  Ask about inpatient status until this passes.

If you live near Big Sur, you also are privilidged to the most beautiful scenery on earth.  I hope that can help some small amount,

max

Almost70now's picture
Almost70now
Posts: 34
Joined: May 2019

yesyes2...I am so sorry you are dealing with metestatic breast cancer since October. I'm praying my scan comes back clean, because like you, I'm scared to death to even think about doing any chemo during the current situation of COVID-19. I can't even imagine how hard this is for you and my heart goes out to you! Please let us know how it goes for you when you start treatment. I will be keeping you in  my prayers dear. Love. Sue

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

I am so sorry for your current situation. Wish I could help. Best of luck.

Almost70now's picture
Almost70now
Posts: 34
Joined: May 2019

I went a week ago Friday for my yearly scan and currently waiting for the results. I have an appointment to review my scans on Tuesday with my cancer doctor, but have decided to have him call me instead of going in to the clinic for a sit down one on one review. I don't go anywhere and basically have distanced myself from family and friends. Steve does all the shopping alone and then takes all the precautions once he gets home...washing the clothes he wore shopping, showering and then wiping down the groceries before coming in contact with me. We've decided it's better to be safe than sorry. I have COPD, along with my compromised immune system from the cancer so I have to be very careful not to catch anything. We are ok with staying home and yes we miss seeing our children and grandchildren, but have worked out a good plan with daily phone calls and drive bys to stay in contact. All is done from a distance. I have a new grandson born a week ago and haven't held him yet, but get to see him through the car window a few days a week when the kids do a drive by. I guess we have to be creative during this scary time. This is something new to all of us, and takes the term "new normal" to a whole different level. Stay safe my friends.

Love Sue

 

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

I have really missed hearing from you! Yes, times are tough. In my world I miss my grandchildren horribly. Two of my three sons are now unemployed due to this situation with the third expecting to get the ax this week. Portfolio values are already way down and all my models show the Dow going down to $15000. Lets hope they are wrong. On the bright side, once an effective treatment or vaccine is available, things should spring back rather dramatically. As I said in an earlier post, I have been hospitalized twice in just over a year with pneumonia. Both times caught from munchkins. If I get COVID-19 I am a goner. Your grandchildren are beautiful! Good luck everyone!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3450
Joined: May 2012

I went back to work two years ago, part-time.   The last three months I've been FT.  Today, my boss called and said he is being tested, awaiting results.  He wants me to do about 60 hours/week, if I can.   Somerhing's gotta give....  This is very mkuch like The Walking Dead series, in my opinion.

Fortunately, the grocery stores are well-stocked in Upstate SC, and Wal Marts here allow anyone over 60 to shop Tuesday mornings at 6:00 Am; the store opens to the public at 7:00 AM.

 

Almost70now's picture
Almost70now
Posts: 34
Joined: May 2019

Hi Max... Are you able to work from home? 60 hours a week is a lot to have to do...hope you can handle the task ahead of you. I hope your boss tests negative. Our grocery stores here have been able to keep up with the demand, and so far we have not had a problem getting items we need. Steve shops very early in the morning to avoid crowds and takes advantage of the different stores that are giving seniors special times to shop. Take care my friend and try to rest when you can while working such long hours. Love, Sue 

Almost70now's picture
Almost70now
Posts: 34
Joined: May 2019

I too feel like I would be a goner if I caught COVID-19, hence, total distancing from family, friends or unnecessary outings. Last March(2019), I landed in the hospital for 3 days with a severe bronchial infection and have since had to have home oxygen when needed. If I catch a cold it always takes a deep dive down into my chest, so I'm always cautious to not be around anyone that is sick. My youngest son works for Homeland security so for the time being his job is deemed essential, but my oldest son works construction and has had his hours cut by 20 hours a week and facing possible full shut down in the coming week. I have a feeling we will see more changes to come in April and May and sadly now that testing is being done on a wider scale, the number of infected people will surely rise. All we can do is pay attention to the rules that are in place and stay at home. I get so angry when I see on TV the large numbers of people still ignoring the warnings, as was the case with all the kids on spring break in Florida. I pray for all of us! Love, Sue

illead's picture
illead
Posts: 857
Joined: Aug 2012

Glad to hear that everyone is coping okay but for most of you, I know it isn't easy. So sorry to hear that you are dealing with major worries besides the virus.  Bill and I are doing fine so far, although Bill's immune system is pretty low, IgG is 707 and at 71 we are having to be very careful also.  I think I told you before that he has suffered from a chronic sinus infection for over 2 years and I have been meaning to tell you Shady the latest with him.  The last time he saw his onc. she referred him to an ENT at UC Davis.  He ended up having a 3 hr. procedure of an intense roto router.  He had a fungus ball the size of a large golf ball.  The doctor said it is not uncommon but most people with good immune systems can deal with them.  His sinuses were also running pus, he said he didn't know how Bill dealt with it for so long.  His surgery was mid Jan and he is still recuperating but doing much better now.  The doctor is incredible and is convinced that Bill will have no more problems.  The local ENT here told Bill there was nothing more he could do and Bill would have to live with it.  Also I had a complete shoulder replacement the end of Jan and Bill had cataract surgery a week and a half ago.  We are both doing very well with all the surgeries and so thankful we just made it under the wire before everything pretty much shut down.

My thoughts and prayers are with you all, hang in there and please be safe,

Becky

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Hi everyone. This virus has me worried too. Last year Nov-Dec I had a really bad cold that kept me home for 2 weeks. The coughing was the worse. It took about 4 weeks before I felt like I was getting over it. Based on symtoms mY dr did believe it was flu (I did get a flu shot) but had me take decongestants without the cough suppresant. I have one of those plastic devices for checking the breathing by doing deep inhaling. Did it almost daily to make sure it didn't hit my lungs. Don't want anything like that again, if I can avoid it. Not sure my immune system can handle it. 

 

Sal0101's picture
Sal0101
Posts: 132
Joined: Sep 2015

Hello!!  Being 3+ years out, I have wondered if I am still considered immunocompromised.  I am taking all the precautions I can, considering my lungs were a tad compromised in the beginning. My husband does the grocery shopping, I just started wiping down the groceries. I miss my grandchild more than I ever thought I could. Both of my kids are considered essential, my daughter is a Nurse practitioner working in nursing homes, my son is a detective.  We havent seen them in two weeks, although my daughter did toss some support stockings from my front porch to the inside my house over the weekend.  After putting it on hold for several years, on March 9th I finally had a total knee replacement. That was right before the pandemic, chaos, etc. began. i was somewhat prepared to be cooped up for awhile. I however do have to go to physical therapy twice a week, and that concerns me.  It scares me to be out in public.  All non-critical PT was  cancelled and critical  sessions are staggered. I am the only Person along with my physical Therapist in a huge room so that is some consolation, but it still worries me. The last thing I want is covid-19 after over-coming what I did. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3450
Joined: May 2012

Sal,

My understnading, and the policy of my cancer center (which is large/Medical School related) is that a person who has had a blood cancer (Lymphoma, Leukemia, M.M.) is autoimmune compromised for life.   My paper files are marked as such.   However, this does not mean that these individuals necessarily have weaker systems; I myself gets fewer colds or flus than almost anyone I know.  It IS a relevant designation with most insurance carriers.    My own oncologist, who has five Board Certtifications, told my wife and I that the strength of a person's immune  system is essentially equal to their WBC count; if normal counts, then they have normal range infection-fighting abilities.    I have had knowledgable people here respond to that by saying it is an oversimplification, and I do not doubt that. 

Not directly related but interesting is that the American Red Cross will accept donations from organ cancer patients after then have been in remission for a certain number of years, but NEVER accepts donations from people who have had a blood cancer.

Sue,   No, I have to go in to work, but the facility is mostly empty anyway....

To paraphrase the old country music hit,  "I was social distancing before social distancing was cool."

 

.

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

I was told that as a lymphoma sufferer I was generally not eligible to be a donor for blood, organs or other tissues for life regardless of if I was in remission. Also was told that I should consider myself immuno-compromised for life. This was from MD Anderson when I went for a second opinion. So be careful out there to avoid covid-19 exposure.

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017
ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

Money may be one of the main spreaders of the coronavirus. Avoid cash when possible. Use creditcards.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3450
Joined: May 2012

Got my Pneumococcal-23 Booster today.   A booster is recommended every 5 years for persons autoimmune compromised.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3450
Joined: May 2012

My boss, a 24 y/o kid who tested positive three weeks ago, returned to work today (Monday).  Cleared from DHEC.  He never had fever or pain, just a cough for a period.   The vast majority of persons who test positive never have any symptoms, or at least none worse than a common cold.    As more and more test positve with no symptoms, the best mortality estimates are showing CV-19 to be less deadly than common, annual influenzas. In the mean time, the Constitution and civil liberties are shut down

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

But I do think a lot of this must be for political gain. And you are right, certainly my constitutional rights have been violated. I have a house in the outer banks but am not allowed to go to it for annual maintenance. Local residents and the residents of the three adjoining counties can come and go at will regardless of whether they are property owners and regardless of where else they may have traveled. That is a violation of the Equal Protections as guaranteed in the constitution by the 5th and 14th amendments. A federal lawsuit has been filed. A lot of people stand a better chance of gaining power in the fall elections if the economy is crashed. I do so hope I am wrong about that but it appears to be the case.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3450
Joined: May 2012

I attempted to respond, but was blocked by the Googlefuehrers before even transmitting.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3450
Joined: May 2012

Korona uber Alles  !

 

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

This is a tightly controlled and monitored forum. I sometimes wonder just how much is censored or edited out. Maybe that is why its such a dead forum? This was a wonderful helpful forum in past years. I benefitted greatly from it. Now it goes days at a time with no posts. Sad. Maybe I just survived too long. Thank you for your communications over the years.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3450
Joined: May 2012

Shadester,

As you know from our PMs, I have not yet been rendered what the Soviets described as 'Non-personhood.'   That is, a person who 'never existed, does not now exist, and of whom no one may speak, lest you become non-persons also.'

Obviously, you are very correct that the vibe here has been 'anemic'; ironic for a blood cancers site.  Maybe that's what happens after a month of site down time, and a year before that, loss of massive numbers of posts.    "Nothing to see here folks, move along.  Do NOT look behind the curtain; Ignore that old man !"

 

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

and please send all your money to me so I can sterilize it for you! LOL Joking of course.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I got one 2 years ago

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I check here about once a week but I don't always post. Like you said, not much going on. I talked to my oncologist last week, planned meeting by phone. She told me the using a bandana as a mask was sufficient but to limit where I go. (Don't take chances.) I live in the Chgo area so the company I work for requested everyone work remotly until further notice. It took me a week to get myself really set up but I am enjoying it. Two of our 3 kids have jobs where they can work from home. Our 3rd kid has a job with no remote options and has applied to unemployment $. I guess the quarentine status doesn't bother me too much since it is still cold and we had snow twice last week. Not sure if I want to go back to the office.  Except to see my coworkers.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3450
Joined: May 2012

I'm glad you and your family are mostly doing pretty well through this historic period.

SC is reopening many forms of retail today (Tuesday).  Georgia is ahead of us, with most restaurants reopening this week.

As Bob Dylan noted in Tangled up in Blue:  The only thing I knew how ta do was ta keep on keepin on, gettin thru...tangled up in blue.

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

A very strange dude but a great poet, singer and musician. He has a distillery in Tennessee producing a brand called "Heaven's Door".

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3450
Joined: May 2012

Greenville, SC, is the largest town near me.  In the 80s, Dylan was playing the Convention Center (since torn down), and walked from his Hotel to the rear stage door to get ready for that night's show.   Security took him to be a mentally deranged bum, and refused his access.  He had to call his contacts to eventually get in.

Also, the Convention Center was the last place the original Lynard Skynard played.  The private plane they boarded was the one that went down, killing two of the founding members.  The brother of the lead singer took over the role of lead vocalist.

 

 

 

 

 

 

 

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

Having seen Dylan up close I can see why the security guards thought this. He is scary looking. His real name is Robert Zimmerman from Chisholm Minnesota. He was raised Jewish but was also a prominent member of the group "Jews for Jesus". In short a Jesus freak. Chain smoker. However is one of my top 3 favorite musicians and I love his music. Wouldn't change a hair on his head. He is great. Makes the best rye whiskey ever at his distillery in Tennessee. Its called "Heaven's Door", I assume after his song of the same name.

I apologize for putting this on a cancer blog. Helps me cope. Please forgive.

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