COVID-19 effects on cancer patients

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?

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Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    edited March 2020 #2
    Effects

    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
    Evarista Member Posts: 332 Member
    Stressful times

    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
    ShadyGuy Member Posts: 782 Member
    edited March 2020 #4
    This whole virus thing ...

    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
    yesyes2 Member Posts: 591
    edited March 2020 #5
    How the virus is affecting me.

    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.

     

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    Not good ...

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

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    edited March 2020 #7
    yesyes2 said:

    How the virus is affecting me.

    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.

     

    Dilemma

    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
    Almost70now Member Posts: 37 Member
    edited March 2020 #8
    Scary times!

    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

     

  • Almost70now
    Almost70now Member Posts: 37 Member
    yesyes2 said:

    How the virus is affecting me.

    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.

     

    So sorry..

    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

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    ShadyGuy said:

    Hi Sue

    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!

    Bam !

    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
    Almost70now Member Posts: 37 Member
    ShadyGuy said:

    Hi Sue

    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!

    I hear ya ShadyGuy!

    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

  • Almost70now
    Almost70now Member Posts: 37 Member
    edited March 2020 #12

    Bam !

    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.

     

    Max...

    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 

  • illead
    illead Member Posts: 880 Member
    edited March 2020 #13
    Hi everyone

    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
    lindary Member Posts: 711 Member
    scary

    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. 

     

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    edited March 2020 #15
    Very interesting analysis of pandemic trends

    https://healthweather.us/

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    edited March 2020 #16
    Sal0101 said:

    I am concerned too

    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. 

    Immuno

    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."

     

    .

  • Sal0101
    Sal0101 Member Posts: 136 Member
    edited March 2020 #17
    I am concerned too

    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. 

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    edited April 2020 #18

    Immuno

    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."

     

    .

    I agree

    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
    ShadyGuy Member Posts: 782 Member
    edited April 2020 #19

    Scary times!

    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

     

    Hi Sue

    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!

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    Money

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

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    edited April 2020 #21
    ShadyGuy said:

    Money

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

    Vaccine

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