With the increasing spread of the coronavirus disease 2019 (COVID-19) and the significant threat the disease poses to myeloma patients as well as the general public, we thought it would be useful to start up a forum thread dedicated to the topic.
How are you reacting to the spread of the virus? What are you doing differently? What are the challenges you are facing related to the disease? Have you developed COVID-19 and, if so, what has happened?
We'd like this thread to be an opportunity for forum members to share experiences and strategies they are putting in place relating to the coronavirus.
The thread is not intended as a place to discuss policy or scientific issues related to the virus, or as a place to promote links to coronavirus-related information pages, guidelines, or the like.
(Myeloma-specific scientific issues related to COVID-19 can be brought up, when relevant, in separate forum threads.)
Forums
Re: Coronavirus (COVID-19) & multiple myeloma
I still work, so I made a decision this past Thursday that starting this coming Monday I would not go into the office and work from home. Not surprisingly, the company late Friday made its decision to allow all people that had the ability to work from home do so. Almost all of us have VPN access through our laptops.
Now I face a decision about my continued participation in our church choir. I talked to the choir director and told him I will be there this Sunday, but I am taking a wait-and-see approach as to next week and on. It is Lent and we have been gearing up, practice-wise, for holy week and Easter as we have been practicing a lot of music. I am torn, so I am playing it by ear. I am not the only person in the choir with cancer as one of our altos has ovarian cancer and is undergoing chemotherapy. We are both in our late 60s so are double risk.
Now I face a decision about my continued participation in our church choir. I talked to the choir director and told him I will be there this Sunday, but I am taking a wait-and-see approach as to next week and on. It is Lent and we have been gearing up, practice-wise, for holy week and Easter as we have been practicing a lot of music. I am torn, so I am playing it by ear. I am not the only person in the choir with cancer as one of our altos has ovarian cancer and is undergoing chemotherapy. We are both in our late 60s so are double risk.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Coronavirus (COVID-19) & multiple myeloma
Hello,
My son called me last night and proposed that his Pop and I take a couple of weeks of self-imposed quarantine. He’ll deliver groceries, etc. I’m in shock.
I’m 71.
I have myeloma, free light chain only. I'm in remission, but my red cells and neutrophils are currently slightly below normal range. My immunoglobulins are way, way below normal: A, G and M and have been that way since my autologous stem cell transplant in October 2018.
I’m on Revlimid, only 5 mg daily.
We live in a townhouse development in downtown Squamis, British Columbia. I walk out on our estuary daily with my dog and will continue to do so. Some things are not negotiable. (I only pass others in the windy, ocean air.)
I have reluctantly agreed to quarantine, i.e., no shopping, social life, dragon boating, or yoga for two weeks, only because of concerns about asymptomatic young people spreading the virus unknowingly. March break is here, and schools will likely be shut down for an additional 2 weeks, which will put lots of young folks out and about. Our town is currently listed as having 0 cases.
Funny how I worried about multiple myeloma robbing me of time with my grandson and then along comes COVID-19.
I do wonder if this is an overreaction.
Jmz
My son called me last night and proposed that his Pop and I take a couple of weeks of self-imposed quarantine. He’ll deliver groceries, etc. I’m in shock.
I’m 71.
I have myeloma, free light chain only. I'm in remission, but my red cells and neutrophils are currently slightly below normal range. My immunoglobulins are way, way below normal: A, G and M and have been that way since my autologous stem cell transplant in October 2018.
I’m on Revlimid, only 5 mg daily.
We live in a townhouse development in downtown Squamis, British Columbia. I walk out on our estuary daily with my dog and will continue to do so. Some things are not negotiable. (I only pass others in the windy, ocean air.)
I have reluctantly agreed to quarantine, i.e., no shopping, social life, dragon boating, or yoga for two weeks, only because of concerns about asymptomatic young people spreading the virus unknowingly. March break is here, and schools will likely be shut down for an additional 2 weeks, which will put lots of young folks out and about. Our town is currently listed as having 0 cases.
Funny how I worried about multiple myeloma robbing me of time with my grandson and then along comes COVID-19.
I do wonder if this is an overreaction.
Jmz
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janimcdo - Name: Janice McDonald
- Who do you know with myeloma?: me,
- When were you/they diagnosed?: Yesterday, April 2018
- Age at diagnosis: 69
Re: Coronavirus (COVID-19) & multiple myeloma
I try to avoid going to the hospital, grocery store, etc. I had an Aredia (pamidronate) infusion scheduled for this month but delayed it to avoid the long hospital visit. My continuing, unsolved problem are germs I get from my daughter in elementary school.
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Coronavirus (COVID-19) & multiple myeloma
This is a very interesting topic!
Ever since I caught a respiratory bug while on a military deployment to Turkey, I've had repeated bouts of what I believe to be bronchitis. It lasts two or three weeks and is very debilitating.
For that reason, I am very concerned about catching the COVID-19 virus.
I believe that if I catch the virus, and if it enters my lungs, it will take me out.
I'm going to be extremely careful and aware of my surroundings, but not panicky.
Ever since I caught a respiratory bug while on a military deployment to Turkey, I've had repeated bouts of what I believe to be bronchitis. It lasts two or three weeks and is very debilitating.
For that reason, I am very concerned about catching the COVID-19 virus.
I believe that if I catch the virus, and if it enters my lungs, it will take me out.
I'm going to be extremely careful and aware of my surroundings, but not panicky.
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Coronavirus (COVID-19) & multiple myeloma
Hi all,
I am 55, in remission, on Darzalex, Pomalyst, and dex, very healthy otherwise, and I am not planning to leave my home except to run alone outside until we can know it is safe. My teenage son is no longer in school, he has quit his athletic training, and no longer goes to the gym. My big question is whether he should be allowed to have single friends over to work out with him in our garage, or how can I make sure he gets a chance to see his girlfriend. For now, we are thinking of having them not come into our main house, sanitize their hands, and make sure they are healthy, but I know that even that is a risk because not everyone is symptomatic. My husband is limiting himself to two grocery store trips a week; he works from home so that is a blessing. We are trying to treat this as we did when I was just post-autologous stem cell transplant: very careful with sanitizing surfaces, keeping our distance. Heartbreakingly, I don't even hug my son at a time when hugs are desperately needed. Perhaps when the 2-week period after he last went to school we can loosen that rule.
I really don't think we are overreacting, and I really think we have to act now and get everyone around us to act now. We multiple myeloma patients are much more likely than the general population to have severe problems and a much higher death rate, and we are really in trouble if there are no beds in the ICU to take us in. They are doing wartime "triage" in northern Italy right now, where in some cases older patients or those with underlying conditions are not getting the most intensive treatment, but it is instead going to other patients deemed more likely to survive. No, we are not overreacting.
I wish everyone good health and best of luck in the weeks and months ahead. I look forward to hearing what you are doing to protect yourselves and stay healthy, mentally and physically.
I am 55, in remission, on Darzalex, Pomalyst, and dex, very healthy otherwise, and I am not planning to leave my home except to run alone outside until we can know it is safe. My teenage son is no longer in school, he has quit his athletic training, and no longer goes to the gym. My big question is whether he should be allowed to have single friends over to work out with him in our garage, or how can I make sure he gets a chance to see his girlfriend. For now, we are thinking of having them not come into our main house, sanitize their hands, and make sure they are healthy, but I know that even that is a risk because not everyone is symptomatic. My husband is limiting himself to two grocery store trips a week; he works from home so that is a blessing. We are trying to treat this as we did when I was just post-autologous stem cell transplant: very careful with sanitizing surfaces, keeping our distance. Heartbreakingly, I don't even hug my son at a time when hugs are desperately needed. Perhaps when the 2-week period after he last went to school we can loosen that rule.
I really don't think we are overreacting, and I really think we have to act now and get everyone around us to act now. We multiple myeloma patients are much more likely than the general population to have severe problems and a much higher death rate, and we are really in trouble if there are no beds in the ICU to take us in. They are doing wartime "triage" in northern Italy right now, where in some cases older patients or those with underlying conditions are not getting the most intensive treatment, but it is instead going to other patients deemed more likely to survive. No, we are not overreacting.
I wish everyone good health and best of luck in the weeks and months ahead. I look forward to hearing what you are doing to protect yourselves and stay healthy, mentally and physically.
Re: Coronavirus (COVID-19) & multiple myeloma
How things have changed in two weeks. On March 14 my daughters, who are hospital nurses, asked me to self-isolate. Now my state (Maryland) is under a stay-at-home order. Last fall I was enrolled in a clinical trial. The goal of the trial was to see if the treatment would extend progression-free survival. I’ve reached stringent complete response (sCR) and MRD+ as a result of the trial agent plus Revlimid maintenance. Monday was to have been my 6-month appointment with blood work, a bone marrow biopsy and treatment. Instead, my clinical trial, like many others, is on hold. We hope that maybe it can continue in 4-6 months. I had a telemedicine video call with my specialist. He told me to stay home, probably for at least two more months. No visitors, mask and gloves if I must go out. He looked at me very seriously and said,”This virus is really bad stuff.” So here I am.
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LindaM - Name: Linda
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2016
- Age at diagnosis: 59
Re: Coronavirus (COVID-19) & multiple myeloma
This is very scary stuff and protecting oneself is critical. This virus is the real deal.
Eric
Eric
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Entropy - Who do you know with myeloma?: Me (MGUS)
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 48
Re: Coronavirus (COVID-19) & multiple myeloma
With social distancing, most non-essential businesses have been shut down as well as large public gatherings, including churches, gyms, all sporting events, etc.
I have been working from home and my choir has been canceled as our services are virtual.
I still ride my bike outside 3 or 4 times a week, but it is primarily solo or in small groups of 2-4.
I have to go to my oncologist office once a week for a Velcade shot and a blood test. They now have a table set up in the hall before you go in. They make sure you are wearing a mask, take your temperature, ask questions about your travel and if you came in contact with anyone who was diagnosed or showed symptoms of COVID-19. Finally, they make you wash your hands with hand sterilizer before admitting to the clinic. Only patients are allowed.
They redid the waiting room so the seats are all at least 6 feet (1.83 m) apart. All of the staff wear gloves and masks but not other protective gear. After I get blood drawn, I proceed to the infusion room. While waiting for the test results, I occupy one of the infusion chairs, which are spaced 6 feet apart. The Infusion nurse then gives me my shot and I leave. So far, none of the staff has tested positive. They all worry since they come into contact with dozens of patients every day.
I have been working from home and my choir has been canceled as our services are virtual.
I still ride my bike outside 3 or 4 times a week, but it is primarily solo or in small groups of 2-4.
I have to go to my oncologist office once a week for a Velcade shot and a blood test. They now have a table set up in the hall before you go in. They make sure you are wearing a mask, take your temperature, ask questions about your travel and if you came in contact with anyone who was diagnosed or showed symptoms of COVID-19. Finally, they make you wash your hands with hand sterilizer before admitting to the clinic. Only patients are allowed.
They redid the waiting room so the seats are all at least 6 feet (1.83 m) apart. All of the staff wear gloves and masks but not other protective gear. After I get blood drawn, I proceed to the infusion room. While waiting for the test results, I occupy one of the infusion chairs, which are spaced 6 feet apart. The Infusion nurse then gives me my shot and I leave. So far, none of the staff has tested positive. They all worry since they come into contact with dozens of patients every day.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Coronavirus (COVID-19) & multiple myeloma
I work in a laboratory that's considered an essential service (we are involved with food safety), so we have to keep running. Since lab work inherently involves being in the lab, our opportunities to work from home are limited. What we've done is to split the lab into two teams. The teams do alternating five day shifts so that no more than half of our staff are in the building at any one time. This gives us ample room for social distancing. When at home, we can use emergency leave hours to cover our time off as well as doing whatever remote work we can.
On the "staying sane" side of things, we started doing 5:00 p.m. neighborhood happy hours. Anyone interested is welcome to come set up a lawn chair on our front yard (at least six feet from any other lawn chair) and to also bring a beverage of their choice. This has been a really nice way to stay connected with the other people in the neighborhood, keep an eye on the elderly among us, and give the folks who are at home with their kids a chance for some adult conversation. If you're comfortable doing this and your neighbors would be into the idea, I highly recommend it.
On the "staying sane" side of things, we started doing 5:00 p.m. neighborhood happy hours. Anyone interested is welcome to come set up a lawn chair on our front yard (at least six feet from any other lawn chair) and to also bring a beverage of their choice. This has been a really nice way to stay connected with the other people in the neighborhood, keep an eye on the elderly among us, and give the folks who are at home with their kids a chance for some adult conversation. If you're comfortable doing this and your neighbors would be into the idea, I highly recommend it.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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