Life’s not always fair.

[Pwsuba]

I beat Testicular cancer in 2010. Unfortunately I released this year. I’ve been doing what I can.
I contacted Einhorn who replied that my best curative option was RPLND surgery. My case went in front of the tumor board at IU. I was called and told since my AFP is so high and disease is in my bone and lungs that I could have the surgery it’s not a best option.

I’m feeling rather hopeless right now. Maybe there’s some clinical trials or something.

Or maybe this is just the end for me.

[MiloTheDog]

I can only imagine what you're going through and my heart sank reading that. I don't know you but you'll be in my prayers. Many have been told before that their cancer is terminal or inoperable and still manage to beat the disease. Try to have hope and don't give up. Contact every expert you can. Look into clinical trials. Maybe have the surgery anyway.

I can't really offer any legitimate advice. I just wanted to say something. Stay strong and find hope.

[biwi]

I'm sorry to hear about your tough position! I guess I would just be looking to the experts for their advice on your options to proceed.

[Davepet]

Pwsuba,

Afraid I'm not clear, I think you are saying they refused to do the surgery Dr E recommended?

DAve

[Pwsuba]

So I emailed doctor E he had told me that would be my best option. But I guess since my AFP is still so high and there’s disease in my bone (where the tumor caused a fracture) and a couple spots on my lungs along with the tumor in my abdomen.

They would do the surgery but since the other spots it wouldn’t be curative I guess.

According for Dr. Cary, Dr. E was on the tumor board which came with the opinion that surgery isn’t best option.

I’m going to reach out to Dr.E and hopefully there’s something else that can be done. When I initially spoke to Dr.E I don’t think he had my full history.

I’ve been so scatter brained and stressed and anxiety ridden through all this I need to try to calm and get myself onto a clear path.

I don’t know if it’s an option but I want to inquire about HDC w/ stemcell. Or maybe some kind of clinical trial.


Since I received the call tonight I’ve been going in circles in my head. From there has to be something else this can’t be what kills me. Not now. Not at 31. Then I just get hopeless that I won’t see Christmas. Tears come and go.

[Skywalker]

I am so sorry that this is happening to you. I have been living in the same dark place with my husband. I have been doing a lot of research on recurrence recently. From your post history it seems like you did 4-EP after your recurrence. It does seem super strange that your doctor did not recommend traditional salvage therapy (TIP or VeIP). You also said that your tumor shrank some which should mean it is not completely platinum refractory. The gist of the research basically states that HDC with STC can be curative in situations with poor prognostic factors, late relapse, even refractory disease. The numbers are never what you want them to be but it has helped some people in really bad situations. Keep fighting for yourself.

[AussieDan]

Oh man, so sorry... I was given a terminal diagnosis with TC as well. Really difficult to process, I know. I tried to focus on something I wanted to achieve before I died but to be honest I didn't get too far with it. I realised I needed another appointment to look forward to so I wasn't just dealing with palliative care so I found another oncologist to see who specialises in TC (via Mike on this forum). I wasn't expecting much from it, I just liked having someone else to tell me how rare/unlucky I was, and wondering if there'd be a clinical trial or something. In the end it was the start of the process that saved my life, or has given me a longer life at least. Point is, my mental state improved just for having another appointment to go to and wondering what I might learn. Feel free to ask me anything else or private message me.

[Pwsuba]

Well I’ll be on my way for an in person appointment with Dr. Einhorn next week. I’m praying that it’s not a waste of time where he tells me there’s basically nothing to be done.

[Pwsuba]

A bit nervous, I’m going to see Dr. Einhorn tomorrow morning. I’m hoping he has something good some kind of hope. If not I’ve already heard back from MD Anderson looking to set me up to see Dr. Nieto.

[biwi]

Great to hear! Take a walk up and down canal park and around monument circle. They are pretty cool places. There is also a cancer survivors park thing here : 985 Indiana Ave, Indianapolis, IN 46202

[Mike]

How did it go with the appointment at IU?

Mike

[Pwsuba]

It went fairly well.
They took some blood to do a like genetic profile of the cancer (gardiant -sp)

He did say with the late relapse it’s not always so fast growing, so that made me feel a little better in terms of not feeling like everything needed to be done yesterday. That’s not to say I don’t want to get things done ASAP.

There’s the, I believe it was TIP chemo as an option

There’s a possibility of maybe a targeted therapy if the genetic tests shows anything.

There may be a immunosuppressant clinical trial as well.


I’m still planning on going to MD Anderson to meet with Dr. Nieto. However Dr.E basically dismissed high dose with stem cell as a non effective treatment. I was a little bummed by that.

[Mike]

OK, I was going to suggest the Make an Impact program at Memorial Sloan Kettering https://www.mskcc.org/research-progr...ut-make-impact as they will do genetic profiling of resistant germ cell tumors. Then, if there is an actionable target you may be able to get the medications for free as part of the Tapur Study https://www.tapur.org/patients

Actionable targets are rare for testis cancer but if you can get the genetic profiling done, then to me it is at least worth giving it a shot.

Keep us posted.

Mike