Posts by Donna Brooks20

Angela Wright said:Honestly, I’m at a loss for advice because what you're facing by Wednesday is truly an extraordinary situation.
A few days ago, I watched an episode of House about a woman dealing with two different cancers—one was being managed while the other was out of control. I can't tell how much of that is pure fiction and how much is a genuine medical possibility.
I figured his first priority would be addressing the brain issues.
Hang in there and just take it one day at a time. Who knows? Maybe Temodal will have an impact on both the melanoma and the testes. If so, it could set a precedent for some off-label clinical use in future cases.

Thanks for reaching out. For now, we are extremely satisfied with the treatment at the Mayo Clinic. It’s a bit of a drive for us, but we make it work.
Last week he underwent preparation for radiation, and this week he started both radiation and chemo. He’s handling the combination well. He's mobile, has an appetite, though he does nap a bit every afternoon.
The doctors at the Mayo Clinic asked him to participate in a study since his case is so complex. Because they were so transparent about his issues and everyone wanted to help, he agreed—with the strict condition that his personal data remains private. That was the arrangement.

That’s all from me. Regards to everyone else in the fight.
Minić

Hello.
I haven't been able to sit down and write calmly about everything happening with us. My partner and I have been going through a incredibly turbulent period.
At the end of November 2016, he was diagnosed with three tumors, as I mentioned before. A testicular tumor, melanoma, and a brain tumor.
We moved quickly to get in touch with the Mayo Clinic, and after seeing Dr. Melada, we secured a room in neurosurgery.
The brain tumor was removed; the PhD pathology report shows a high-grade anaplastic glioma. We were still fighting at the Mayo Clinic
to ensure they wouldn't discharge him until all necessary surgeries were complete. We managed to get his melanoma removed as well (pathology confirmed it was indeed melanoma),
and the testicular surgery was performed. After that, they let him come home, and within ten days, we already had the next two procedures scheduled at the Mayo Clinic:
a sentinel lymph node biopsy and a re-excision of the melanoma site.
Following all that, we consulted with oncologist Juretić, who suggested radiation to the head and Temozolomid therapy. We also found Dr. Gamulin,
who advised monitoring markers for the testicular tumor (the markers have dropped) and emphasized that addressing the brain issue is the priority.
Having read about a thousand pages online, I understand this is likely the only course of action they could offer, but we still sought a second opinion at Avian.
We visited them, they reviewed all the findings, and they recommended the exact same therapy. They told us there was no point in trying to
seek treatment at Avian right now and that we should accept the protocol in Washington, D.C. The treatment was approved by the board for my partner, so at the end of January 2017, we are heading to Washington, D.C. for planning.
Looking back at everything that has happened over the last month and a half, I honestly don't know where we found the strength to organize all of this. Mind you, we live in
California. However, I took advice from Angela Wright; in every conversation, I remained assertive and refused to back down until every single detail was settled with the doctors.
I don't know what the future holds. I am scared, both for him and for myself.
This forum has helped me immensely in making sense of this nightmare, so thank you to everyone participating.
Regards,
Minnie

Angela Wright said:I have to admit, I haven't come across a case involving three simultaneous primary tumors yet. I suspect there must be some common trigger, perhaps exposure to something in the environment.
Please keep us posted on how things develop.
What specifically are the tumors in the middle? I am particularly interested in the one in the brain.
Hang in there. We are here for questions and support.

Believe me, I didn't dive deep into the PhDs' research because, frankly, I was terrified. I don't know if that’s understandable, but that’s how it felt. Doctors don't offer any real prognoses.
The only specific detail I remember regarding the brain: a high-grade anaplastic glial tumor.

As for what he was exposed to, it was years of intense workplace stress and harassment. After about ten years, he finally hit his breaking point and switched companies. He completely reinvented himself there—he works hard, and they actually value and respect him. And now, this. Just my luck.

Hello everyone,
I first reached out about twenty days ago when we discovered my husband has a testicular tumor with possible brain metastases.
Since that realization, things have moved at lightning speed.
We contacted neurosurgeon Melada, and my husband ended up being admitted to the Mayo Clinic. They identified three distinct tumors: melanoma, a testicular tumor, and a brain tumor. We handled all the surgeries at the Mayo Clinic, where the PhDs determined that all three are primary tumors.
He went from a healthy 48-year-old to a man fighting three tumors in just one month.
At home, we are in shock, terrified, and grieving. But despite everything, we are staying highly organized, and so far, everything is proceeding as planned given the circumstances.

What I wanted to share is this:
- These support forums are truly the best source of information when you find yourself in a situation like ours.
- I spent 48 hours straight reading page after page, jotting down questions and answers, which helped me navigate this nightmare much more effectively.

Thank you all for being here, and to Angela Wright, a sincere thank you from California.

Regards,
Minnie

Angela Wright said:As for me, I'm worried. I fear he waited too long, and there's a chance the tumors have already spread to the brain.
Melada is an excellent doctor. She will explain the situation and the next steps clearly. Surgery seems inevitable, followed by further testing to check for other sites—likely a PET CT and a bone scan.
If a tumor is in the brain, radiation might be the move, but don't rule out surgery if the site is small enough and localized. Melada will provide the recommendation immediately.
Regardless, you're facing a massive fight ahead. First surgery, then almost certainly chemotherapy.
Hang in there.

Thanks for the quick reply. It’s a relief to hear you say Melada is a primary specialist. She's a solid doctor; we'll rely on her guidance.
Is there actual hope for a cure here, or has this all gone too far?

I am looking for some advice. My partner was diagnosed yesterday with testicular cancer at the Mediko clinic in Cleveland.
The whole thing started last week when he complained about losing his ability to speak. It happened twice in one week, and that’s when he finally decided to tell me. He also mentioned, "You know, my left testicle has been bothering me for a while now."
That was last Wednesday.
By Friday, we were already seeing his primary care physician, who ran a full blood panel, checked his markers, and several other tests. On Monday, she told him he needed to see a urologist and a neurologist immediately, so we booked everything at the Mediko clinic in Cleveland.
We went to the clinic, and the urologist confirmed it is indeed testicular cancer and surgery is required. The neurologist said his stuttering—this inability to speak—could be anything, and insisted we get an MRI. We got the MRI done, but this morning they called us urgently to say the scan wasn't clear enough and needs to be reviewed by a neurosurgeon at the Mayo Clinic.
I didn't know how to get him to the Mayo Clinic, so I scheduled a private appointment with Dr. Ante Melada for next Tuesday.
I also managed to book an appointment with an oncologist today at 5:00 PM so he can talk things through with us.

He has actually been feeling sick for a while; he knew something was wrong, but he kept quiet.
Does this bad MRI result mean the cancer has metastasized to his brain?
What are our next steps? How does this process work?

Panic is setting in, but I am trying to stay rational and piece this together.

First, the surgery for the testis (do we need a referral from the GP?), then the Mayo Clinic to check the brain, and then...
Or should we be doing this in a different order?

Best regards,
Midnight

Here is what I have filled out 🙂

Good luck with the degree!

MM