Late relapse, late reaction to EP

[Pwsuba]

Starting at the beginning of this year my lower back became extremely painful. Found out I had a tumor and compression fracture.

Initial AFP was 80. Suspected recurrence, by the time I started chemo again AFP was 300.
Two EP rounds in AFP was 3900 but tumor had shrunk.

My doctor mentioned he spoke with Einhorn who believed my cancer was chemo resistant and bad prognosis.

We I was already done with the 3 round at that point and decided, for better or worse to just do the fourth round.

New scan and new AFP (bHCG was never re-elevated). Tumor was 2.7x2.7 cm now 2.4x2.6 cm, not a huge change but anything smaller is good right!?!

The big worry, I figured the AFP would be elevated still, as it wasn’t showing any signs of dropping. I was braced to hear an AFP over 4000. But nope. It dropped to 2255!!!

I’m maybe being too optimistic but that gave me encouragement maybe the chemo just needed more time to do it’s thing.

Because of this we have decided to do 2 more rounds.

[Trekga]

So how many rounds of EP have you completed? What was pathology? So sorry your AFP is still so high.
I would email Dr. Einhorn yourself TODAY: [email protected]
He will respond, give the above summary and your Oncologist's name. Where are you located?

[Pwsuba]

I’ve done 4x ep already.

THANKYOU! I’ve been looking for his Einhorns email.

I have emailed Dr.Einhorn (using the above given email) now I, impatiently, wait to hear back.

[Pwsuba]

Well, that was quick.
Einhorn replied to my email already, he’s failrly blunt.
Said at this point there’s no value in any more rounds of EP and that RPLND is what I would need for anything possibly curative.

[biwi]

Yes, he probably gets a fair number of emails.

RPLND is certainly a good option at this point, especially if it seems localized to the one node.

[Tarc79]

Please email Dr. Yago Nieto at MD Anderson as well. ynietoatmdanderson.org. Let's see what he says as well. I think you may need a surgery first followed by HDC with stem cell transplant, and perhaps more subsequent surgeries.
Did I miss the part why you had another 4xEP when standard salvage therapy is 4xTIP? And if that fails, you would get 2 x HDC?

[S P]

Sorry to hear about the late recurrence. YES PLEASE do what Dr Einhorn suggests, and reach out to Dr Nieto as well (thanks Selman!)

You shouldn't have gotten additional EP rounds. Correct, standard salvage therapy is TIP possibly followed by 1 or 2x HDC (high-dose chemotherapy)

Late recurrences do have a poor prognosis, thus Dr E's recommendation for an RPLND. Best of luck! We're here for you!

[Pwsuba]

Welp now I feel a little worse. I know y’all aren’t doctors but I feel like I wasted months already.
I keep thinking about dying and how I’m not ready to die.

I know I shouldn’t think that way yet, but because the tumor has spinal cord involvement I just had this horrible gut feeling I’m going to be told it can’t be treated surgically.

Either way I’m still, hopefulish. I’m trying to get in with Dr. Clint Cary at IU I’m ready to have the surgery whenever. I’m blessed that my caretakers (parents) are retired and we’re able to travel where we need to.


There’s just so much going through my mind constantly. It’s like there’s hope there’s hope so I feel positive and good. Then I read something or see something and it’s “poor prognosis” and my mind just immediately goes to I’m going to die.

I’m just not ready to hear I have a clock with little to no time left.

[biwi]

Pwsuba, can you post your full history, from initial diagnosis, including all treatments and tests?

I think people are confused. It sounds to me like you originally didn't have chemo at all? And then at your late relapse, you have had 4xEP to date and were considering 2x more? This seems more the case, I don't think any DR would prescribe 4xEP after already having 4xEP given the toxicity of etoposide at that cumulative amount.

Your situation is serious but there definitely still is hope. Surgery and 2nd line chemo is very viable and has cured many folks.

[Pwsuba]

Ok I’ll clear things up.

My initial diagnosis and treatment was 2009-2010.
Mixed germ cell (I can look up exact but yolk sac, embryo carcinoma, and teritoma)
Stage 3b
I did 3xbep and 1xep (due to bleo destroying my lungs)
Then RPLND w/ foster.

My original oncologist passed away nov 2016


I screwed up a bit by not immediately seeking out an expert I wanted to believe oh this is as ‘easy’ as the first time where chemo just destroyed the cancer.

So when my doctor referred me to the oncologist (which I’m not staying with after now) I just went with it. He said he consulted with Einhorn who agreed with the EP for the recurrence.

So now I’ve decided I’m not doing any more EP chemo as though my AFP dropped over 1000 points after the last round there’s no benefit in more EP.

2009-2010 3xbep 1x ep
2010 RPLND (Dr. Foster)
REMISSION

2018 recurrence tumor in abdomen pressing/intertwined with spine @ L1 area

4xEP Jan-April

AFP high of 3900, finally dropped now to 2250
Tumor shrunk about 30-40%


Med records are being faxed to Dr. Cary along with CT scans have been mailed for him to look at and hopefully to be able to operate on the tumor and remove it. Following that I will possibly try to just get an appointment with Einhorn as well maybe see if he will take over my case.

With the spinal cord interaction I’m stressing it will be inoperable.

I hope that clears things up, I’m sorry for the confusion as I’m a little scatter brained at the moment.

But I have everything in motion to hopefully be able to get in ASAP for a second RPLND.

I’m thinking IF Dr. Cary does take on my case and all I may try to get an appointment with Dr.Einhorn while I’m there and see if he will take over my case.

I’m done being ‘stupid’ with my care, if it’s possible to go to a top expert that’s what I need to do.

[Pwsuba]

At this point I believe my anxiety and stress are starting to effect me physically. I’ve been having random bouts of nausea.

Through I did find an article today that gave me better hope.

From what I’m reading on the CT report there’s only one lymph node that’s enlarged, at this point it’s approx 2.5x2.5cm that doesn’t seem to large my huge worry is it’s so close/against my spine. Which it actually caused a fracture of my L1.
Then there are a couple nodules on my lungs the largest which is ~4mm.

I’m trying to stay as hopeful as I can.

I’m only 31 I beat it once, then graduated college. The. Law school, which I just graduated last May and passed the GA bar. I’ve just begun my life my career, I’m too young for this to be it.

[biwi]

You are doing the right things, push for the experts, they are how to ensure your best chances! Best of luck!

[Trekga]

I'm sorry. Confused at why they went with EP again? Ugh!!! If you had RPLN with Dr. Foster than you probably should have reached out to IU before treatment for relapse.
Again, so sorry. This underscores why a TC expert should be consulted everytime a male is diagnosed- too few Oncologists treat TC enough to know. Sounds like grounds for a lawsuit- the Oncologist should have consulted the new NCCN guidelines,

[Pwsuba]

Well ironically enough, I am a lawyer. I don’t know, my oncologist (well kind of former now) said he had reached out to Einhorn.

But either way I’m going to see Dr. Einhorn next week in person to see what all he has to say.
I’m partially worried it’s going to just be him telling me there’s nothing.

[Tarc79]

Don't give up. At all! There is more to be done including high dose chemo with stem cell transplant. I remember once reading a blog about a patient with significant bone involvement. He has survived. That said, you have a tough road ahead of you, and there is not much room for error anymore. You must be proactive with your treatment. At this point, you should be consulting with multiple centers of excellence, not just IU. It is likely that you will find a center who treated patients just like you. But, please search.

And, I hate to say this.... but do not even fully trust anyone, including doctors. It is perfectly fine to ask questions and raise your concerns as long as you are respectful. I am one of the more unlucky and therefore, "experienced" members of this community. If you want to survive, you need to be detail oriented, study as if you are going for med school and hold your ground when you think something is odd. I know the emotional part of you will keep thinking that this is it. That's why you need your rational side to light up and fight.