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What I was trying to say is all great cancer centers are good, or excellent, but some specialize in specific cancers due to personnel on staff.
My brother went through years of tests at OHC, Mayo and The James Center before he was finally diagnoses and treated for MM at Cleveland Clinic Ft Lauderdale
1st was bone marrow transplant, then each different chemo only works for only a few years then they have to change it
MM is a miserable disease. Hard to diagnose - hard to treat - never curable (as of now)
What I was trying to say is all great cancer centers are good, or excellent, but some specialize in specific cancers due to personnel on staff.
My brother went through years of tests at OHC, Mayo and The James Center before he was finally diagnoses and treated for MM at Cleveland Clinic Ft Lauderdale
1st was bone marrow transplant, then each different chemo only works for only a few years then they have to change it
MM is a miserable disease. Hard to diagnose - hard to treat - never curable (as of now)
I REALLY appreciate that last sentence - "MM is a miserable disease...never curable (as of now).
I also agree that all of the renowned cancer centers are good, and better than your local hospital. We live 45 minutes from the Cleveland Clinic. We are moving to Cleveland in a few months. We have offered my sister a room at our home if she wanted to be treated at the Cleveland Clinic. In fact, if she was interested, we would look for a mother daughter situation, where her SO (who is not her husband, they have been together for over 25 years) could also come. He receives social security and doesn't work, with the exception of booking acts once a week for which he probable earns less than $500, much less)
The closest cancer center to her is Memorial Sloan Kettering in NYC. She won't go there or see a doctor there because "it's depressing and full of cancer and death". Instead, she has chosen to obtain treatment at a cardiac centered hospital. That is who the specialize in. It is known as "The Heart Center". They do have an oncology department, but that isn't what they are noted for.
This is noteworthy because my mother, who died in her early 50s, also refused to be treated at Memorial Sloan Kettering for the same reason. She instead chose a hospital that is known for treating the wealthy - Lenox Hill, and requested a "private room facing Central Park".
This was a woman with four daughters - none yet settled in life, and had lives that were put on hold because of her illness. Her youngest daughter was only 13.
Make sure your sister is seeing a MM Specalist. It makes all the difference.
I am not sure it is a "death sentence" any longer. Immunotherapy has made all the difference. Tom Brokaw was diagnosed with it about 10 years ago and he is still alive.
My sister is willfully NOT seeing an MM specialist. She also does not have the fame and recourses of a Tom Brokaw, so I think that isn't a great comparison.
I do think that wealthy and famous people have better outcomes in all diseases.
I REALLY appreciate that last sentence - "MM is a miserable disease...never curable (as of now).
I also agree that all of the renowned cancer centers are good, and better than your local hospital. We live 45 minutes from the Cleveland Clinic. We are moving to Cleveland in a few months. We have offered my sister a room at our home if she wanted to be treated at the Cleveland Clinic. In fact, if she was interested, we would look for a mother daughter situation, where her SO (who is not her husband, they have been together for over 25 years) could also come. He receives social security and doesn't work, with the exception of booking acts once a week for which he probable earns less than $500, much less)
The closest cancer center to her is Memorial Sloan Kettering in NYC. She won't go there or see a doctor there because "it's depressing and full of cancer and death". Instead, she has chosen to obtain treatment at a cardiac centered hospital. That is who the specialize in. It is known as "The Heart Center". They do have an oncology department, but that isn't what they are noted for.
This is noteworthy because my mother, who died in her early 50s, also refused to be treated at Memorial Sloan Kettering for the same reason. She instead chose a hospital that is known for treating the wealthy - Lenox Hill, and requested a "private room facing Central Park".
This was a woman with four daughters - none yet settled in life, and had lives that were put on hold because of her illness. Her youngest daughter was only 13.
My mother was also a narc.
Wow. Sloan-Kettering is the first place I would go.
Wow. Sloan-Kettering is the first place I would go.
Your sister is her own worst enemy.
That reminded me, one of my dear friends said the same thing about the well known university's cancer center near her, she said she would never go there and be a guinea pig, everybody died there.
Then about 3 months later she called me and said she finally agreed to go, nothing else had worked, she went there and died soon after. She also had some sort of blood cancer.
I'm hoping for everyone that her fighting spirit helps her.
That reminded me, one of my dear friends said the same thing about the well known university's cancer center near her, she said she would never go there and be a guinea pig, everybody died there.
Then about 3 months later she called me and said she finally agreed to go, nothing else had worked, she went there and died soon after. She also had some sort of blood cancer.
I'm hoping for everyone that her fighting spirit helps her.
I know people who were treated at Sloan-Kettering years ago and are still here. Yes, a lot of people who are treated at major cancer hospitals are going to die. Some do get more time, though.
I know people who were treated at Sloan-Kettering years ago and are still here. Yes, a lot of people who are treated at major cancer hospitals are going to die. Some do get more time, though.
Yes, I know that. It's just that she had the same fear and unfortunately they couldn't save her.
In 2020, I used a brand of hand sanitizer that later turned out to be contaminated with benzene. In May 2021 I was referred to an oncologist who ran my blood work and said I had a 70% chance of NOT getting multiple myeloma and a 30% chance of getting MM. 6 months later he ran it again and the results showed no paraprotein (abnormal protein made by the body). So he said, "Come back in a year." This year's results were the same: no paraprotein.
This is good, but I'm guessing we still have to keep on top of it. So that in a nutshell is my history with multiple myeloma.
My brother in law was diagnosed with MM in 2010. He had a tandem stem cell transplant in 2011 and has remained on several different oral medications since that time. He was only 49 when he was diagnosed and was told that the younger you are at diagnosis, the harder it is to survive. However, he has done quite well! He works full time and is very physically active as well - in fact, he never sits still! He has only had one hospitalization since the stem cell transplants were completed and that was for influenza pneumonia the fall before the pandemic. He has taken COVID precautions very seriously and has dodged that bullet. He receives his care at his community hospital having declined opportunities to travel to more well known cancer centers because at the time of his diagnosis he had kids at home in school.
I will hope that your sister has an outcome like my BIL. Cheering for you.
Wow. Sloan-Kettering is the first place I would go.
Your sister is her own worst enemy.
Highly agree. If I was near Sloan-kettering, that's where I would go unless I had brain cancer. Last I checked, one of the Massachusetts cancer centers was ranked number one for brain cancers.
Her sister could have better odds if she went there from the start. Sloan Kettering is highly rated on US News for most cancers.
My dad lived in Union County when he was diagnosed. He was sent to Robert Wood. My son has an uncle who was a cancer drug rep for Bayer, he said Robert Wood was great but Sloan Kettering was better if my dad would go there. He chose not to, mostly because he liked his team plus he was in the process of moving to Burlington County which was an hour and fifteen minutes from it. Sloan Kettering would have been at least two hours drive.
As for the comment about people going to these famous cancer centers, of course some will die but it is not black and white. They most likely got to the famous cancer center much too late for them to be able to change the outcome. It's like using a fire extinguisher when most of the house is engulfed in flames.
Quote:
Originally Posted by fluffythewondercat
In 2020, I used a brand of hand sanitizer that later turned out to be contaminated with benzene. In May 2021 I was referred to an oncologist who ran my blood work and said I had a 70% chance of NOT getting multiple myeloma and a 30% chance of getting MM. 6 months later he ran it again and the results showed no paraprotein (abnormal protein made by the body). So he said, "Come back in a year." This year's results were the same: no paraprotein.
This is good, but I'm guessing we still have to keep on top of it. So that in a nutshell is my history with multiple myeloma.
Have you been tested for Benzene exposure? I have. I have high levels in my body from using Benzene products for 20 years. The cancer that Benzene causes is AML Leukemia which is what my dad died from. He'd been exposed to Benzene from the 1950's until 2003 when he retired. He was a mechanic, using the Benzene products multiple times a day, every day except Sunday. In addition to mechanics being at risk for AML Leukemia being caused by Benzene, people who do auto body have been exposed similar to what my dad and I were.
I've said this before, I honestly don't see how you would get cancer this fast after using a hand sanitizer that contained Benzene. Were you soaking in a tub of this hand sanitizer?
What I know about this benzene caused cancer is that our bodies will fight it until we get run down, then our bodies aren't able to fight it. My dad had anesthesia for a prostate biopsy that he never recovered from.
My husband had an HPV+ cancer in 2009. Similar for him. He fell off of his car carrier while delivering cars, then he ended up with the flu. Next thing we know, he has a swollen gland in his neck, right over the carotid artery winter of 2008. By summer of 2009, he went on vacation, when he came back that swollen gland was the size of a golf ball.
Every person I ran across that also had his cancer said the same thing, their body was run down before they got diagnosed.
HPV can lay dormant for over 50 years. Men can not be tested, only women and gay men. If you have never been tested for HPV by your gyno, I suggest you consider being tested.
I also suggest you get tested for Benzene exposure if you haven't.
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