Posted on 02/14/2024 1:01:01 PM PST by nickcarraway
So, what happened??
Cure is not a word normally associated with the disease of cancer.
However, remission is.
I'm here today because of MD Anderson. My first visit was 10 years ago this May.
It is an incredible institution in my experience and for many others that I know.
Be sure to post a follow-up to your discussion.
Thanks.
Jim Allison had been working on immunotherapy since very early in his career. He didn’t have much support for several years.
To be fair, a Japanese researcher had also been working on immunotherapy for cancer treatment. Both were working on immunotherapy without knowing someone else was doing the same. The two of them shared the Nobel Prize.
I will, but I suspect everyone at MDA has been ordered to not discuss the lawsuit with anyone, even other employees.
Amen to that. I was a young, niave biophysicist grad student. I’d already been exposed at the sidelines to academic fraud which probably cost my mentor a Nobel (look up Summerlin & Sloan-Kettering) I reported to R. A. Good..
I was newly graduated from high school at the time and on an American Heart Assoc. research fellowship. Later went to college, then the military, then to grad school.
Fellow grad students (mostly EEs) were using engineering notebooks.. Everything was documented. Seemd crazy at the time because I saved computer code, photos, and a decent lab notebook. You name it.
After graduation I went into academia, then industry. Intellectual property attorneys quickly noted that a full-blown engineering notebook was THE solution.
My only complaint? 39 years later! My budget for good ink pens remains outrageous.
the patent was issued with my name and the names of the bosses that weaseled onto it ... the company paid me a token $1,000.00 when someone bought the patent, so since they didn’t have to actually pay me anything anyway, i was happy ...
My oncologist asked me where I read about it. I also suggested that he not ask anyone about it. If you don’t discuss it with anyone, you don’t need to hire an attorney.
Totally agree. Not everyone can be cured, but they can also live much longer under their care.
What kind of cancer do you have?
I have a rare form of lymphoma -- Mantle Cell Lymphoma.
My onc at MDA is one of the tops in the world for my version of lymphoma. He's Chinese and absolutely brilliant. He immigrated here many years ago, worked at NIH as both a researcher and clinician for years and then moved to MDA.
It is not only the docs at MDA, but the whole concept of cancer care. The very first step in cancer care is an accurate, detailed, and thorough diagnosis. As you probably know, each cancer is different, and being able to zero in with world-class diagnostics is critically important. And, if your version of cancer falls outside the "cookie cutter" treatment, there is another world-class center, the research department, just down the hall that the doctors can visit for the best answers.
My first visit there years ago just blew me away after dealing with a local regional cancer center. By the way, my local onc center was good -- it was just not in the same league. I had the thought from that experience that cancer at MDA was like the common cold in the rest of the world.
I have always made it a point to reach out to other patients when I visit. I normally stay in the Rotary House, where it is easy to strike up a discussion with others. The stories they have to tell are incredible. After talking with many, many patients, I am of the absolute opinion that a diagnosis of cancer is NOT a death sentence (although many do die), but that the quality of care there is orders of magnitude beyond a local onc center.
I get it that not everyone can go to MDA for treatment. However, getting a second opinion and having them direct your treatment locally can dramatically improve your chances of beating the disease.
By the way, what is your cancer?
I was diagnosed with metastatic prostate cancer 9½ years ago. 8 bone mets even though my PSA was about 9.4 at diagnosis. 5-year survival rates was 54%.
I got a TIA probably last July. I got VERY dizzy reffing volleyball in September I had to cancel the rest of my season.
At the time, I had been getting Lupron injections every three months and also taking 160 mg of Xtandi per day. Last September, we cut down the Xtandi to 120 mg per day, and discontinue the Lupron until my PSA and testosterone started to go up. After nine months, my PSA is still undetectable, and my testosterone is still very low.
My oncologist told me yesterday that my PSA might not go up for a year, maybe longer. When I asked him how many of his patients pass away every month, he said between 4-6 on average.
He also said IF Xtandi or the Xtandi/Lupron combo ever stops working, there are 8 to 9 other therapies to go to. He also said it is likely I will never need another treatment based on my response so far. I’ll be 71 in April, so I will almost surely died of something else.
You are absolutely right about MD Anderson. Cancers that are hardly ever treated at any regional cancer center are common at MDA.
First time my wife and I walked in to MDA, we had a strange feeling because it really hits you that your cancer is real. Also had a sense of awe at the place.
Met with my urologist, decided to meet with the radiation oncologist and a GU oncologist. The GU oncologist said I’d have 3-5 years if I did his clinical trial. I declined. Then met with my urologist and he told me my PSA wasn’t very high and I’d be around for a long time. That was such a relief, my wife and I went out for dinner to celebrate.
I tell anyone I know who has gotten cancer to at least get a consult at MDA if for no other reason than to get confirmation for their local diagnosis and treatment plan.
........ I tell anyone I know who has gotten cancer to at least get a consult at MDA, if for no other reason than to get confirmation for their local diagnosis and treatment plan.
I agree 100%!
I was in awe when I visited. I was 69 at the time, a runner, and had never set foot in a hospital as a patient in my life. I had just been discharged from a six-week stay in a local hospital from my cancer and kidney failure (two were related). Frankly, I was not sure if I would make it.
My first thought as I wandered around MDA was, these are my people. Everybody had cancer. You saw people with masks everywhere (long before COVID) and pushing poles down the halls and the street with five and six drips.
After my four-day visit, I had peace. I was confident I had the best care possible and saw so many survivors. Like you, it was a peaceful, inspiring feeling.
I was a real evangelist for MDA. I would tell anyone who would listen who had a cancer diagnosis or a loved one or friend with that diagnosis that they must go to MDA -- at least for a second opinion. My diagnosis was made locally, and chemo treatment started. My visit to MDA and their diagnosis, after extensive testing, was quite different and greatly improved.
After going over the top with my message about MDA to others, I found that nobody heard me. Anyone I approached seemed convinced they had the best doctor and were at a great center. They just did not want to hear what I had to say. Many I spoke with ended up meeting the Lord. I gave up on my story and message. It only seemed to make them angry, and they would just not hear. I now "suggest" they get a second opinion. They still do not hear -- but at least they don't get mad :-). A cancer diagnosis can have a profound mental impact. For me, it was a great change. I accepted my own mortality, and when the Good Lord says it's time to come home, I'm ready to go. I don't worry. It's a peace.
We are both very lucky. Luck seems to follow those who work at it. I respect medical science and most doctors -- but they are human and don't always get it right. That's why it is critical to educate yourself and become your own advocate. A second opinion is so important in a life-or-death disease.
I'm happy for us both. God bless.
I've become a huge fan since my 14-year-old granddaughter is so involved in the sport. In fact, she's driving with her parents to St. Louis (500 miles) for a regional meet with her club as I type this :-).
I can’t remember how many times I have told people to get at least a second opinion at MDA, even for rare cancers. What is rare for most oncologists are everyday cases at MD Anderson. MD Anderson has more clinical trials and research by more of the best researchers and doctors in the world.
Like you mentioned, no one wants to listen.
That said, I know of at least six guys on FR who took my advice and had prostate cancer surgery by the head of the urology clinic at MDA. None of them had long term urinary control problems or ED issues.
I’ll be back reffing in the Fall.
Well, I’m glad for you - you got something out of it. Thanks for responding.
That's quite an accomplishment!
And a pretty good sign that getting the best cancer care in the world just might make a difference.
I assume your surgery was performed at MDA. Do you live in the Houston area?
I live over 500 miles away and have never stayed in Houston for more than four or five days. I can get there in about two hours from my house to MDA with a direct flight. I am typically in my room at the Rotary House in about another 20 minutes. And then, I walk to all my appointments in Mays or the main hospital/clinic and escape back to my room between appointments. It is quite convenient. The restaurant there is excellent -- including the food courts in the walkway.
By the way, they even have a blood draw room in the hotel lobby. That's quite the thing and a big time saver.
Since my lymphoma treatment does not include surgery, of course, I've always been treated locally but at the direction of my MDA doctor. All my tests/diagnostics are done at MDA, though. That's worked quite well.
Having said all that, I've met plenty of patients who stay in Houston for weeks and months. I actually met a guy from Peru who was there for almost a year. He stayed at the Rotary House for the whole visit. I would not want to pay his hotel bill :-). I'm sure it was okay with him. He was still alive!
I did not have my prostate removed because I already had eight bone mets.
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.