A little encouragement, I hope

[JudeD59]

My brother Steve, who is three years older than me, was diagnosed in 2012 with adrenal cancer. Adrenal cancer is very aggressive and very, very rare. It has a very poor prognosis. Steve had surgery and treatments to remove the tumor. He lives in a rural area of PA with a pretty good hospital that had a doctor who had experience with adrenal cancer.

In 2014 they found spots on his lungs. I told him to contact MD Anderson. He did and then flew down to meet with the team there. He stayed for a week undergoing tests. He was able to then go back home to have his treatments, but the treatments were under the advice and supervision of the team at MD Anderson. They were in constant contact. He reached NED again.

Last year, three months after a clean scan, a new scan showed spots on lungs and liver. His oncologist in PA told him there was nothing they could do and he should enjoy the time he had left with his family. He went back to MD Anderson and they wanted to start him on a trial drug. But since adrenal cancer is so rare and affects so few people, there isn't much research done on it. So the FDA wouldn't approve the trial drug for use against adrenal cancer. MD Anderson submitted a request for a different trial drug. The FDA said no. And then a third drug. No. Finally they fought for him to be able to take Opdivo and after a battle (remember that the cancer is growing this whole time and he isn't getting any treatment to slow or stop it) the FDA okayed it.

His scans since starting Opdivo have shown not only no new growth, but some shrinkage of the tumors. He's had no side effects, goes to work every day, enjoys time with his family, does all his normal activities, and even drove 4 hours last weekend to come hang out with me for a couple of days, give me nuggies, and generally be an annoying big brother. To be around him, you wouldn't even know he was sick. If he had listened to his local oncologist, he would be dead.

So even though colorectal cancer SUCKS, we are lucky that there is so much research going on with new treatments and procedures being tried every day. I have high hopes that one day a cure will be found. Rarer cancers don't get as much research or as many new trials. Of course I hope that someday all forms of cancer will be rare and curable.

My brother's story also proves that statistics are just numbers and each individual has their own path. The numbers can be wrong, the doctors can be wrong, and sometimes you can beat what seems unbeatable, or at least give it a hell of a run for it's money. Go, Steve! Kick cancer's ass!

Judy

[MissMolly]

Judy:
Thank You for sharing your brother's inspiring story.

You both share a valuable character trait of personal resiliency and resolve.

My brother is a survivor of a Grade IV glioblastoma multiforma (malignant brain tumor). The unexplainable does happen.

As someone with Addison's disease (adrenal gland failure), I empathize with your brother's situation and adrenal cancer. Adrenal gland disorders are rare and receive virtually no biochemical attention or research. Cortisol, produced by the adrenal glands, is used by every cell in the body. It is critical for sustaining life. And, yet, few people even know where their adrenal glands are located or what their endocrine function is.

It is not easy having a rare medical condition. The only medication to treat Addison's disease (Solu-Cortef) was introduced over 50 years ago. There is nothing in the research and development pipeline.

Sincere best wishes that your brother continues to show improvement on the Opdivo immunotherapy trial.
- Karen -

[PainInTheAss]

I'm glad you encouraged your brother to Find a second opinion.

My ex also has a rare cancer, medullary thyroid. He was told by three different doctors that he had 3 to 6 months to live last summer, and my kids were very upset. I told them they are only guessing, and they don't know. They can't predict what cancer will do. Sure enough, the drug they had him taking started working even though it doesn't usually work well for this cancer. Many spots on his bones disappeared and other spots shrunk. The doctors at MD Anderson were surprised! The funny thing is that they never told him that the three to six months prediction no longer applied. I was the one who explained that to him. He is more hopeful and in better spirits now.

My brother is a doctor, so I am sympathetic to doctors, but I have learned from a difficult pregnancy seeing many different doctors and getting so many differing opinions that they are often just guessing based on their own experience. Different experiences, different guesses.

My brother says this joke, "What do you call the person who graduates last from Medical school?" Answer: "Doctor"

[DarknessEmbraced]

I'm glad you encouraged your brother to get a second opinion and that he's doing well!

[JudeD59]

Thanks for the replies. Just an update--Steve is still doing well on the Opdivo. He was scanned again last week and no new growth and no new nodules. He feels well and hasn't had any negative side effects.

Miss Molly (Karen), I'm sorry for all you and your family have gone through. It's frustrating to hear that they've made no progress in treating Addison's in so many years. Your kindness and advice is one of the brightest spots on this board. Thank you.

PITA, I'm glad your ex is doing better and has you to explain things the doctors should have explained. Yikes.

Darkness--as always--<<hugs>>

Judy

[Lee]

My brother's story also proves that statistics are just numbers and each individual has their own path. The numbers can be wrong, the doctors can be wrong, and sometimes you can beat what seems unbeatable, or at least give it a hell of a run for it's money. Go, Steve! Kick cancer's ass!

Judy

CONGRATULATIONS to your brother and his success. I've always believed 2nd opinions at a major cancer treatment center is a good idea. And I truly believe those that are actively involved in there treatment plan have better odds than those that just go with the flow. Knowledge is power.

Again, congratulations to your brother,

Lee

[fumaros]

That is an amazing story. I still can't believe that your brother had to fight for the treatment that is now saving his life. Great news, and thanks for sharing it.