Lymphoma and COVID-19

ShadyGuy
ShadyGuy Member Posts: 769 Member

I am just wondering if anyone on here has had complications in their lymphoma treatments (other than inconvenience) caused by the COVID-19 virus. So far I have been able to avoid it even though my neighbors and their four kids and my daughter and her husband and son have had it. All nine of these people tested positive but had either mild or no symptoms. Six were kids aged 3-17. The adults were 55, 53, 32 and 29. I have had minor difficulty arranging and attending medical appointments which have been mostly virtual. I am concerned that all these people with such minor symptoms will cause others to take less care in prevention. Without an effective vaccine I fully expect we will eventually have a 100% infection rate which will really solve the problem except for we who are vulnerable.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,725 Member
    My world

    I have lived as if there never was a COVID-19, with no negative effects.   I have probably close to 100 cousins, many, many neices and nephews, etc.  Plus, I have a wide range of friends both at work and church.    No one I know has had ANY symptoms of covid, but a few have tested positive.   No one in their own households later tested positive or showed any symptoms.  Every time I speak to an aquaintence or friend whom I contact only rarely I consciously ask "Has anyone you know had any symptoms of COVID ?, and 100% have answered "not one soul."

    I HAVE had trouble getting medical appointments.  My annual PSA check for prostate cancer was delayed two months:  the urological group shut down.   When I finally got an appointment with my NP, I asked why, and she said ""because of COVID."  I asked how many of their 16 urologists had been needed to treat COVID patients, and she sheepishly replied "none."   I presssed as to what they were doing, and she admitted "nothing."   Urologists, almost always, are NOT the type of MDs who treat epidemic viruses:  this is done by pulmonologists, cardiologists, and internal med doctors almost exclusively (Hospitalists almost always function as internal med doctors).  The urolologists groups is in a brand new building, which serves urology patients ONLY.  It was shuttered "to accomodate the flood of COVID patients." Except that, the local hospitals never even approached full utilization, and there was never any plan anyway to treat COVID at the urology center.  The reasoning is Schizophrenic and anti-science.

    It took me weeks to get scheduled for a P-23 vaccine two months ago.  My doctor and her practice (nearly 10 MDs total) were "working from home."   When I did go in for the shot, the small, regional hospital they are in was EMPTY....  When I got to the doctor's office itself, there was no one waiting, and I saw zero other patients present.   I asked the NP who gave me the shot how many COVID patients were in that hospital, and she replied "NONE."   The receptionist in fact said to me "DO you suppose no one is having heart disease or ulcers or blood pressure issues or appendicitius while this is going on ?"   I replied, "Yeah, I bet they are."

    My cousin has advanced, Stage IV lung cancer, diagnosed about 8 months ago.   SHe has thus far received ONE immunological treatment (she is at her second IV infusion today).  It took her two months to get a biopsy, "because of COVID."    They don't want people getting sick, even if actively dying in the mean time.  Very likely, given my cousin's particulars, COVID hysteria has cut at least a year off of her lifespan, and definitely eliminated any prospect of curative treatments.

    This is pathetic, anti-scientific, and an indictment of the medical industry -- that they can be this idiotic and irrational.  The ability to reason is gone in Western societies.

    max

  • ShadyGuy
    ShadyGuy Member Posts: 769 Member

    My world

    I have lived as if there never was a COVID-19, with no negative effects.   I have probably close to 100 cousins, many, many neices and nephews, etc.  Plus, I have a wide range of friends both at work and church.    No one I know has had ANY symptoms of covid, but a few have tested positive.   No one in their own households later tested positive or showed any symptoms.  Every time I speak to an aquaintence or friend whom I contact only rarely I consciously ask "Has anyone you know had any symptoms of COVID ?, and 100% have answered "not one soul."

    I HAVE had trouble getting medical appointments.  My annual PSA check for prostate cancer was delayed two months:  the urological group shut down.   When I finally got an appointment with my NP, I asked why, and she said ""because of COVID."  I asked how many of their 16 urologists had been needed to treat COVID patients, and she sheepishly replied "none."   I presssed as to what they were doing, and she admitted "nothing."   Urologists, almost always, are NOT the type of MDs who treat epidemic viruses:  this is done by pulmonologists, cardiologists, and internal med doctors almost exclusively (Hospitalists almost always function as internal med doctors).  The urolologists groups is in a brand new building, which serves urology patients ONLY.  It was shuttered "to accomodate the flood of COVID patients." Except that, the local hospitals never even approached full utilization, and there was never any plan anyway to treat COVID at the urology center.  The reasoning is Schizophrenic and anti-science.

    It took me weeks to get scheduled for a P-23 vaccine two months ago.  My doctor and her practice (nearly 10 MDs total) were "working from home."   When I did go in for the shot, the small, regional hospital they are in was EMPTY....  When I got to the doctor's office itself, there was no one waiting, and I saw zero other patients present.   I asked the NP who gave me the shot how many COVID patients were in that hospital, and she replied "NONE."   The receptionist in fact said to me "DO you suppose no one is having heart disease or ulcers or blood pressure issues or appendicitius while this is going on ?"   I replied, "Yeah, I bet they are."

    My cousin has advanced, Stage IV lung cancer, diagnosed about 8 months ago.   SHe has thus far received ONE immunological treatment (she is at her second IV infusion today).  It took her two months to get a biopsy, "because of COVID."    They don't want people getting sick, even if actively dying in the mean time.  Very likely, given my cousin's particulars, COVID hysteria has cut at least a year off of her lifespan, and definitely eliminated any prospect of curative treatments.

    This is pathetic, anti-scientific, and an indictment of the medical industry -- that they can be this idiotic and irrational.  The ability to reason is gone in Western societies.

    max

    Max .....

    I generally agree but we do not all have the luxury. I am so happy for you that you are in full remission from two types of cancer. That is absolutely wonderful and an encouragement to those still in the fight. Your posts are interesting and helpful. Thank you for them. But please remember there are others on here who are fighting daily just to survive. They need to be cautious with covid-19 exposure, especially while getting treatments.

  • ShadyGuy
    ShadyGuy Member Posts: 769 Member

    My world

    I have lived as if there never was a COVID-19, with no negative effects.   I have probably close to 100 cousins, many, many neices and nephews, etc.  Plus, I have a wide range of friends both at work and church.    No one I know has had ANY symptoms of covid, but a few have tested positive.   No one in their own households later tested positive or showed any symptoms.  Every time I speak to an aquaintence or friend whom I contact only rarely I consciously ask "Has anyone you know had any symptoms of COVID ?, and 100% have answered "not one soul."

    I HAVE had trouble getting medical appointments.  My annual PSA check for prostate cancer was delayed two months:  the urological group shut down.   When I finally got an appointment with my NP, I asked why, and she said ""because of COVID."  I asked how many of their 16 urologists had been needed to treat COVID patients, and she sheepishly replied "none."   I presssed as to what they were doing, and she admitted "nothing."   Urologists, almost always, are NOT the type of MDs who treat epidemic viruses:  this is done by pulmonologists, cardiologists, and internal med doctors almost exclusively (Hospitalists almost always function as internal med doctors).  The urolologists groups is in a brand new building, which serves urology patients ONLY.  It was shuttered "to accomodate the flood of COVID patients." Except that, the local hospitals never even approached full utilization, and there was never any plan anyway to treat COVID at the urology center.  The reasoning is Schizophrenic and anti-science.

    It took me weeks to get scheduled for a P-23 vaccine two months ago.  My doctor and her practice (nearly 10 MDs total) were "working from home."   When I did go in for the shot, the small, regional hospital they are in was EMPTY....  When I got to the doctor's office itself, there was no one waiting, and I saw zero other patients present.   I asked the NP who gave me the shot how many COVID patients were in that hospital, and she replied "NONE."   The receptionist in fact said to me "DO you suppose no one is having heart disease or ulcers or blood pressure issues or appendicitius while this is going on ?"   I replied, "Yeah, I bet they are."

    My cousin has advanced, Stage IV lung cancer, diagnosed about 8 months ago.   SHe has thus far received ONE immunological treatment (she is at her second IV infusion today).  It took her two months to get a biopsy, "because of COVID."    They don't want people getting sick, even if actively dying in the mean time.  Very likely, given my cousin's particulars, COVID hysteria has cut at least a year off of her lifespan, and definitely eliminated any prospect of curative treatments.

    This is pathetic, anti-scientific, and an indictment of the medical industry -- that they can be this idiotic and irrational.  The ability to reason is gone in Western societies.

    max

    I know ....

    of a major hospital chain under near lockdown conditions which just resumed some elective procedures because they were going broke. Their occupancy rate was only 42%. Many employees are afraid to work and some make more for not working. The result is that even at reduced occupancy rates there is a shortage of personnel. Staff meetings turn into cry fests. Saving room for the rush that never happened. The small rural county where I spend summer is having a "terrible" outbreak, among the worst in the state. It has had 288 confirmed cases, 1 death and 8 hospitalizations, mostly overnight with zero people on ventilators. The one death was an 88 year old nursing home resident with the underlying condition of COPD. I do believe this is a very dangerous disease but only to a narrow segment of the population. Protect the vulnerable but everyone else get on with life. Take COVID-19 seriously. Wear your mask in crowded places, wash your hands, protect the vulnerable among us but get on with living. We only go round once. As per appointments I just a few minutes ago got a call moving a cardiology appointment from September to December "because of the pandemic". Routine visit so no big deal but it serves as an indicator of what Max is saying. Frightened people often make bad decisions. Be brave but not foolish about it. (edited by author so times are not accurate)

  • Lym999
    Lym999 Member Posts: 43 Member
    Lymphoma and Covid 19

    Max,

     

    Let me first say, I barely even heard the word Lymphoma. I talked with friends, relatives, and others and they knew of nobody that ever had it. To say just because you didn't know anyone who had COVID 19 doesn't mean it isn't out there. We all ended up with some form of Lymphoma and whoever thought that was possible. I just finished up my treatments back in early March and got sick at the end of March along with my wife and son. I was sick for a week with COVID 19 like symptoms including the loss of smell. My wife and I still haven't recovered our sense of smell. Even though we don't know for sure if it was Covid or not it could have ended much worse.

     

    John

  • ShadyGuy
    ShadyGuy Member Posts: 769 Member
    edited August 2020 #6
    good info

    There is a whole series of videos on youtube for people with lymphoma concerned about covid-19.  Just go on youtube and search "lymphoma and covid-19". Also this site in the UK has some relevant info and advice https://lymphoma-action.org.uk/covid-19-and-lymphoma

  • Grateful Mary
    Grateful Mary Member Posts: 5
    edited August 2020 #7
    Just being safe

    Since I had just began my journey with NHL when all this COVID started, I had begun to be causeous because of my treatments. Then I saw everyone else struggling with the COVID. It was a bit surreal. Now others are becoming more comfortable going out and doing life. I am still staying locked down and very causeous. It is ok for me. I get out some (and not just for doctors anymore) One day we will have a new normal. 

  • ShadyGuy
    ShadyGuy Member Posts: 769 Member
    Lym999 said:

    Lymphoma and Covid 19

    Max,

     

    Let me first say, I barely even heard the word Lymphoma. I talked with friends, relatives, and others and they knew of nobody that ever had it. To say just because you didn't know anyone who had COVID 19 doesn't mean it isn't out there. We all ended up with some form of Lymphoma and whoever thought that was possible. I just finished up my treatments back in early March and got sick at the end of March along with my wife and son. I was sick for a week with COVID 19 like symptoms including the loss of smell. My wife and I still haven't recovered our sense of smell. Even though we don't know for sure if it was Covid or not it could have ended much worse.

     

    John

    Odds of getting lymphoma
    Overall, the chance that a man will develop NHL in his lifetime is about 1 in 41; for a woman, the risk is about 1 in 52. Of course some will be more likely than this and some less likely due to the presence or absence of risk factors. The biggest risk factor is age, thus older men are more prone to developing NHL than any other group.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,725 Member
    ShadyGuy said:

    Max .....

    I generally agree but we do not all have the luxury. I am so happy for you that you are in full remission from two types of cancer. That is absolutely wonderful and an encouragement to those still in the fight. Your posts are interesting and helpful. Thank you for them. But please remember there are others on here who are fighting daily just to survive. They need to be cautious with covid-19 exposure, especially while getting treatments.

    Certainly

    I understand yor response, Shady.  But be aware that I have never encourage anyone to avoid due care in avoiding infections.  What I suggest is that medical providers not cease to treat people due to unjustified hysteria.   COVID is very 'real'; I actually have never heard anyone deny that it is a real disease, and dangerous to a limited few under some circumstances.   We cannot stop the world, medical carre, or normal child development regardless.  COVID is a real flu, so let's all react as if it is a real flu, instead of acting as if we are in a 1950s space-invaders horror film.

    As you know, no one is ever truly 'cured' of Lymphoma, certainly not me.  I have continuous reminders: neuropathy, shortness of breath, perpetual itchiness, an occasional CBC result out in left field, weakness.   I am still 'in the game,' and in no way feel privilidged.

    Your friend,

  • duckhead
    duckhead Member Posts: 15 Member

    I will try to revive this thread as the last post was made by Max back in 9/2020. It appears the subject of this thread is still very much an enigma, at least to me, almost 2 years later.

    Since the beginning of Covid, has the medical community learned anything about Covid 19 with respect to those of us who have undergone or are currently receiving immunotherapy or immuno-chemotherapy?

    I just finished my course of Bendamustine + Rituximab (BR) regimen. I have done quite a bit of Googling on this subject of lymphoma and Covid 19 but I am still left scratching my head.

    There is research out there which states that having Covid vaccines PRIOR to Rituximab immunotherapy does provide some protection but not the other way around. How much protection, it appears nobody seems to know.

    So now that I am done with BR, does it mean getting the second Covid booster will not be beneficial? So how long a wait before taking the booster? And how long will it take for someone who finished R-CHOP or BR or whatever regimen to regain normal or close to normal immunity? If ever?

    I have also read somewhere that people like us have a 2-3 times or higher mortality rate from Covid compared to the general population. I have also read that people in our position should get an extra dose of vaccine but if one is undergoing treatment or having just completed treatment, how beneficial is the extra dose? Is Evusheld the answer to sort of fill the gap? As you can see, lots of open questions and very few authoritative and definitive answers.

    I certainly plan to ask my doctor these questions during my next visit in August. Not sure if I will get a definitive answer. So I thought I’d revisit this thread and see if you all have any new new insight on this subject, almost 2 years later. Going back to the original post by ShadyGuy, those of us who are vulnerable, how will we fare if and when we contract Covid?

  • duckhead
    duckhead Member Posts: 15 Member

    Shortly after I posted, I saw a recently uploaded video on YouTube on this very topic. It is from Australia, about 1 1/2 hour long and the title is “Lymphoma and Covid 19 update May 2022”. It is quite informative and answers some of my questions. Hope this helps.

  • ShadyGuy
    ShadyGuy Member Posts: 769 Member

    My question which I hope someone in the medical field can answer is “is this really a vaccine”? Isn’t a vaccine normally made from the pathogen you are seeking protection from? The current vaccines with one exception are”messenger RNA”. Basically as I understand it a strip of synthetic DNA. It seems relatively effective so I am not saying it doesn’t work. My question is “ is this truly a vaccine or should it be called something else?”

    No one in my close circle of family has been hospitalized with CoVID despite several positive tests. My son and his family, despite being fully vaccinated, have all tested positive. He was out of work and quite ill but not hospitalized. Despite having both boosters, he caught it a second time a month later. However I do know of several older (like me) folks who died of it - 3 in one week. All had co morbidities and were in their 70s - 80s. A friend who is an MD says he has lost over 50 patients to CoVID, all but one were unvaccinated and all over 60. Lets face it folks - eventually we all die of something.

    I am opposed to vaccinating young children with this messenger RNA. The risk/reward ratio , in my opinion, does not warrant it.

  • ShadyGuy
    ShadyGuy Member Posts: 769 Member

    From the dictionary

    Vaccine

    Noun

    A preparation of a weakened or killed pathogen, such as a bacterium or virus, or of a portion of the pathogen's structure that upon administration to an individual stimulates antibody production or cellular immunity against the pathogen but is incapable of causing severe infection.