Are you getting cancer treatments during COVID-19?

Are you getting cancer treatments at the moment? What about diagnostic tests, like blood tests, CT scans, mammography, PET scans etc? Is your surgery going ahead as planned or postponed?
I'd like to hear from you. What is like being in treatment during the COVID-19 crisis? How are you doing?

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

@sundance6

Dadl48, So no I could not convince my PC and 7 other doctors I had it because I life in the high desert and we don't have Black leged ticks here. It finally came from my Orthopedic doc who started in medicine as a Microbiologist in the south. I see him every 60 days for a shot in my hip for burcitias. Everytime I would come in he'd asked me how I was doing and if had any of doctors I had seen had any idea what was wrong with me.
One night I watched a golf show that had Pro Golfer Jimmy Walker on. Toward the end of the show they asked him about his Lyme disease that he and his wife both had.
All of a sudden the Light Bulb went off. I imediately came up to mmy office and started reading about it. Copied off a bunch of articles about it. Went into to see my ortho guy for a shot that week and tookthe articles with me. He just smiled! He said he felt I had Lyme disease but it was out of his field at the hospital.
He said the first time I told him my symptoms he knew what it was. He also knew that the way they intially treated me with a small dose of antibiotics would cover it up. It would not show up on the blood test.
Spent the last year and a half researching it.
Something that has come to light recently is that golfers are very suseptable to Lyme Disease because we go out in the brush looking for our ball. Being in the golf business I have played in most areas of the country. Didn't realize that a pro golfer here in Albuquerque,Tim Heron, had it also.
My PC still will not admit that I have it, partly because of hospital protocal, but we've worked out where he treats the "Symptoms"! In my case Headaches and Fatigue are my Biggest problem!
I take two Oxycodone's every day and i hardly have them anymore. I've given up telling others what I take because the look at my arms for the Track Marks. Although new info I have read recently that the brusing on my arms and legs aren't from the Blood thinners I take,but now they say they are from Lyme.
My family still does not understand what it is like.
I had to take a four day business trip a couple weeks ago. It was all driving 1600 miles. Worked four stright 12 hour days. I knew what would happen and it did. I have been moreorless down since them although I'm starting to feel better. Although today I slept approx 16 hours. But I'm getting my strength back.
I don't know if you have seen but there have been two celebrities, Justin Bieber and Shania Twain who have come forward that they both have Lyme.
It helps to have some famous people come forward that has suffered from it! They try and explain it will never go away. I've found that people have different effects from it, but the headaches, fatigue and musscel soreness seemed to be comon.
Sorry for going on about it, but I truly believe it is misdiagnosed 90% of the time.
I'm sure because of it as an autoimune disease and my age puts me at higher risk for the coronavirus, I reaally don't give a Hoot!
Take Care!
Sundance(RB)

Jump to this post

@sundance6
Yours is not an unfamiliar story. Ten or so years ago, a friend traveled in Australia and picked up Lyme disease and another virulent bacterium from the tick. She went to dozens of doctors here in California who had no idea what was wrong, and one who gave her exactly the wrong treatment. Finally, she was diagnosed correctly by the one lab in the area which knew how to test for it. In the interim, the Australia Health System was denying that it had a Lyme disease issue, and county health departments all over America were denying incidents, because, if doctors can't diagnose it and/or don't report it, then there are no county health records for it. By this time, the borreliosis had embedded itself in her connective tissue, forming shell biomes which antibiotics and other treatments couldn't break into, etc. It's a real nightmare, as you well know, and continues to be a controversial subject among some the best known researchers. My heart goes out to you on this struggle and frustration.

REPLY

My brother took me out today, I didn’t realize so many businesses were closed. 2 shopping centers with over 400 shops.
17 cases in my county, (550,000 people) no deaths.
I’ve been home for nearly a year so isolating myself is no big deal.
Instacart doesn’t let me order TP, paper towels etc.
People are going crazy hoarding stuff.
I was running low on candy today, now there’s cause to panic!!!
@lioness, Linda, I think I read a post earlier today where you said Instacart has free delivery if you spend $35. To qualify for the free delivery don’t you have to pay $99 a year? I usually pay $3.99 but occasionally the delivery fee is $7.99 and I don’t know why the difference, do you? Plus all the other fees plus tip . It is convenient but it gets quite expensive especially when you have to order from multiple stores to get the things you need. Last time I ordered from four different stores and still didn’t get everything I requested.
My dad, Aunts, Uncles & Grandparents lived through the 1918 epidemic, 50-100 million deaths. We don’t know what hardship is. We’re so spoiled.
Stay safe all,
Jake

REPLY

I have stage IIIA Multiple Myeloma. I was diagnosed in June, 2019. I am continuing my treatments with KPD, cycle #4. My restaging PET scan and BMB were cancelled at the last minute, on 3/24/20. They were scheduled for 3/24 and 3/25 at Mayo-Jacksonville, FL. I am an R.N., so I understand the rationale of cancelling non-essential tests and procedures, during this critical time, and the unpredictability that COVID-19 has brought to our world. Right now, the tentative plan for me, is to restage after this 4th cycle, and if bone lesions are under control, we may harvest and freeze stem cells, for future ASCT. I am getting progressively weaker with treatment, although my back, neck, and hip pain has improved, overall. I am very thankful for the decreased bone pain, and pray it is a good sign! I am self isolating as much as possible, because my IgG and IgM are below normal. However, my husband is still working, with the public in retail. So it is still scary. He is being careful at work. We picked up a grocery order at Walmart yesterday, and had to wait a while in the car. Walmart was as busy as ever, and people were coming and going as if nothing is going on. Families with children, and groups of 4, 5, and 6 people with only small purchases, going in and out of the store! The parking lot was full! I wanted to get out of the car and scream at people to go home (but I didn't)! I couldn't believe it! So, I am afraid this COVID-19 pandemic will continue for much longer than anticipated! And my treatment plan will change accordingly. Sorry for the long post!

REPLY
@jakedduck1

My brother took me out today, I didn’t realize so many businesses were closed. 2 shopping centers with over 400 shops.
17 cases in my county, (550,000 people) no deaths.
I’ve been home for nearly a year so isolating myself is no big deal.
Instacart doesn’t let me order TP, paper towels etc.
People are going crazy hoarding stuff.
I was running low on candy today, now there’s cause to panic!!!
@lioness, Linda, I think I read a post earlier today where you said Instacart has free delivery if you spend $35. To qualify for the free delivery don’t you have to pay $99 a year? I usually pay $3.99 but occasionally the delivery fee is $7.99 and I don’t know why the difference, do you? Plus all the other fees plus tip . It is convenient but it gets quite expensive especially when you have to order from multiple stores to get the things you need. Last time I ordered from four different stores and still didn’t get everything I requested.
My dad, Aunts, Uncles & Grandparents lived through the 1918 epidemic, 50-100 million deaths. We don’t know what hardship is. We’re so spoiled.
Stay safe all,
Jake

Jump to this post

@jakedduck1 , you mentioned 1918. A friend just told me about a book, "Minnesota 1918, When Flu, Fire, and War Ravaged the State." I have on reserved at library when it opens back up. In MN, their were political rally's going on to boaster support for war, but it resulted in spread of flu. A terrible time in history, which I was not even aware of. If they taught in school, I must of been sleeping that day.

Laurie

REPLY
@jakedduck1

My brother took me out today, I didn’t realize so many businesses were closed. 2 shopping centers with over 400 shops.
17 cases in my county, (550,000 people) no deaths.
I’ve been home for nearly a year so isolating myself is no big deal.
Instacart doesn’t let me order TP, paper towels etc.
People are going crazy hoarding stuff.
I was running low on candy today, now there’s cause to panic!!!
@lioness, Linda, I think I read a post earlier today where you said Instacart has free delivery if you spend $35. To qualify for the free delivery don’t you have to pay $99 a year? I usually pay $3.99 but occasionally the delivery fee is $7.99 and I don’t know why the difference, do you? Plus all the other fees plus tip . It is convenient but it gets quite expensive especially when you have to order from multiple stores to get the things you need. Last time I ordered from four different stores and still didn’t get everything I requested.
My dad, Aunts, Uncles & Grandparents lived through the 1918 epidemic, 50-100 million deaths. We don’t know what hardship is. We’re so spoiled.
Stay safe all,
Jake

Jump to this post

@jakeduck1 No Instacart you have to by into this for delivery which is 99 dollars a year I pay 9.99 a month for this but Walmart.com is buy 35.00 or more and it is free delivery . My MOm was in the epidemic she had scarlet fever during that time. Stay save and I got 2 large bars of dark chocolate at Walgreens. yum

REPLY
@jakedduck1

My brother took me out today, I didn’t realize so many businesses were closed. 2 shopping centers with over 400 shops.
17 cases in my county, (550,000 people) no deaths.
I’ve been home for nearly a year so isolating myself is no big deal.
Instacart doesn’t let me order TP, paper towels etc.
People are going crazy hoarding stuff.
I was running low on candy today, now there’s cause to panic!!!
@lioness, Linda, I think I read a post earlier today where you said Instacart has free delivery if you spend $35. To qualify for the free delivery don’t you have to pay $99 a year? I usually pay $3.99 but occasionally the delivery fee is $7.99 and I don’t know why the difference, do you? Plus all the other fees plus tip . It is convenient but it gets quite expensive especially when you have to order from multiple stores to get the things you need. Last time I ordered from four different stores and still didn’t get everything I requested.
My dad, Aunts, Uncles & Grandparents lived through the 1918 epidemic, 50-100 million deaths. We don’t know what hardship is. We’re so spoiled.
Stay safe all,
Jake

Jump to this post

Hi Leonard. I was just reading thru posts and saw yours. I'm not sure where you are. I'm in rural CO. We have 22 positive cases and 1 death of an 80+ yr old woman with other health conditions....within ours and 2 other counties, total. Trying to self-isolate but it is difficult to get basic necessities and food items to hold over from just one source. Walmart did a $35 or above order for free except that they only filled less than half my order. I ended up going to 5 stores over 10 days (hard to self-isolate when you have to search all over town for what you need to isolate). Very frustrating. I laughed at your candy comment. In trying to get things I need I kept forgetting my comfort candy. I won't bring myself to go out just for that even though it's tempting. You take care.

REPLY
@sundance6

Dadl48, So no I could not convince my PC and 7 other doctors I had it because I life in the high desert and we don't have Black leged ticks here. It finally came from my Orthopedic doc who started in medicine as a Microbiologist in the south. I see him every 60 days for a shot in my hip for burcitias. Everytime I would come in he'd asked me how I was doing and if had any of doctors I had seen had any idea what was wrong with me.
One night I watched a golf show that had Pro Golfer Jimmy Walker on. Toward the end of the show they asked him about his Lyme disease that he and his wife both had.
All of a sudden the Light Bulb went off. I imediately came up to mmy office and started reading about it. Copied off a bunch of articles about it. Went into to see my ortho guy for a shot that week and tookthe articles with me. He just smiled! He said he felt I had Lyme disease but it was out of his field at the hospital.
He said the first time I told him my symptoms he knew what it was. He also knew that the way they intially treated me with a small dose of antibiotics would cover it up. It would not show up on the blood test.
Spent the last year and a half researching it.
Something that has come to light recently is that golfers are very suseptable to Lyme Disease because we go out in the brush looking for our ball. Being in the golf business I have played in most areas of the country. Didn't realize that a pro golfer here in Albuquerque,Tim Heron, had it also.
My PC still will not admit that I have it, partly because of hospital protocal, but we've worked out where he treats the "Symptoms"! In my case Headaches and Fatigue are my Biggest problem!
I take two Oxycodone's every day and i hardly have them anymore. I've given up telling others what I take because the look at my arms for the Track Marks. Although new info I have read recently that the brusing on my arms and legs aren't from the Blood thinners I take,but now they say they are from Lyme.
My family still does not understand what it is like.
I had to take a four day business trip a couple weeks ago. It was all driving 1600 miles. Worked four stright 12 hour days. I knew what would happen and it did. I have been moreorless down since them although I'm starting to feel better. Although today I slept approx 16 hours. But I'm getting my strength back.
I don't know if you have seen but there have been two celebrities, Justin Bieber and Shania Twain who have come forward that they both have Lyme.
It helps to have some famous people come forward that has suffered from it! They try and explain it will never go away. I've found that people have different effects from it, but the headaches, fatigue and musscel soreness seemed to be comon.
Sorry for going on about it, but I truly believe it is misdiagnosed 90% of the time.
I'm sure because of it as an autoimune disease and my age puts me at higher risk for the coronavirus, I reaally don't give a Hoot!
Take Care!
Sundance(RB)

Jump to this post

@sundance6 You might want to try the following links to locate a doctor specializing in Lyme. https://www.lymedisease.org/members/lyme-disease-doctors/ or https://doctor.webmd.com/find-a-doctor/condition/lyme-disease
Good Luck,
Dave, @dandl48

REPLY

My dad has his monthly infusion of a monoclonal antibody for multiple myeloma next week at Mayo Jacksonville. We are concerned about being exposed to so many people during this day long treatment. Does anyone know if masks are available at the front door of the Mangurian Building right when you walk in? Or can I go to the pharmacy on the main floor of the Davis building to see if we can buy masks?

REPLY

Unfortunately many things have not been taught in history. I am 84 and was 6 years old when WWII started. I vividly remember many things at that time. I remember being quarantined when I had scarlet fever in 1941. My unmarried aunt took care of me in an upstairs bedroom since my sister was only a few months old and my mother could not be with me. My father owned a threshing machine and since it was July with the oats were ready to harvest, he and grandfather had a "threshing ring" where they moved from farm to farm harvesting neighbors grain. Dinner was always served by the wife where they were working and they brought the meal outside to my dad and grandfather, instead of letting them eat in the house with the rest of the men. A sign would be put on your door QUANTEENED SCARLET FEVER and warning people to not enter and also red measles and a few other diseases that I can't remember.

Until 1953 when the vaccine was developed and a few years later, polio was very rampant in the summer time, so we didn't go anywhere. Several of the people living near us and a cousin of mine had this and were in "iron lungs" to help their breathing (probably a forerunner of the ventilators now. People who did recover were often paralyzed, or had other ongoing health problems the rest of their lives.

We are resilient and will get through this. Just be patient (a lacking attribute now) and we will get through this. Stay home and help each other when you can.

REPLY
@rmftucker

Unfortunately many things have not been taught in history. I am 84 and was 6 years old when WWII started. I vividly remember many things at that time. I remember being quarantined when I had scarlet fever in 1941. My unmarried aunt took care of me in an upstairs bedroom since my sister was only a few months old and my mother could not be with me. My father owned a threshing machine and since it was July with the oats were ready to harvest, he and grandfather had a "threshing ring" where they moved from farm to farm harvesting neighbors grain. Dinner was always served by the wife where they were working and they brought the meal outside to my dad and grandfather, instead of letting them eat in the house with the rest of the men. A sign would be put on your door QUANTEENED SCARLET FEVER and warning people to not enter and also red measles and a few other diseases that I can't remember.

Until 1953 when the vaccine was developed and a few years later, polio was very rampant in the summer time, so we didn't go anywhere. Several of the people living near us and a cousin of mine had this and were in "iron lungs" to help their breathing (probably a forerunner of the ventilators now. People who did recover were often paralyzed, or had other ongoing health problems the rest of their lives.

We are resilient and will get through this. Just be patient (a lacking attribute now) and we will get through this. Stay home and help each other when you can.

Jump to this post

Love your story, please share more insight and wisdom, anytime! ❤️ Patience is a virtue, time to look to our higher conscious and realize what we have been living without that we need to put first 🙏

REPLY
Please sign in or register to post a reply.