My sons new mets

[JustinsDad]

Hey everyone, I have a question and don't know if any of you have encountered this before. My son was diagnosed with Stage 3 in November 2011. He had an Orchiectomy the day after it was found but already had retroperitineal mets, and spine involvement. The spinal tumor compressed his spinal cord and he needed emergency surgery after losing feeling from the waist down. It was a mixed germ cell tumor. He did 4 rounds of BEP, had an RPLND in March, and is just finishing up TruBeam and Cyberknife Radiation.

On his most recent CT Mapping scan for radiation they found spots on his lungs. We got a full CT done and found metastasis not only in the lungs but on the liver. He is getting an MRI on his brain tomorrow to check for mets there also. My question is, has anyone been near the end of the treatment "road" (low tumor markers, original tumors gone) only to get hit with NEW metastasis? We are all a little scared here as to what it could mean....any advice, help, stories??

JustinsDad

11/22/11 diagnosis 11cm mass left testicle, 9cm retroperitoneal mass, 4cm spinal mass 3cm lymph node mass
11/23 Orchiectomy
12/1/11 Emergency Laminectomy to relieve spinal pressure
12/16/11 Started 4 rounds BEP
3/17/12 RPLND done
5/20/12 Started TruBeam Radiation
6/19/12 Started Cyberknife Radiation T8 spine
6/18/112 New Metastasis found[/SIZE][/I]

[Aegean]

JD,

I do not have your answer, however I do believe that the question deserves its own thread, so I hope you don't mind that I moved it. To help us along, could you please post the tumor composition.

Without further information, the only thing I can say is that it sounds like involvement by a center of expertise is necessary and that Justin is likely heading for High Dose Chemo.

[Davepet]

It's pretty rare, the chemo is quite effective normally. Like Aegean said the breakdown of the mixed germ cell tumors would be helpful (IE, seminoma, yolk sac, embryonal, chorio, teratoma).

I'll second his being seen at a center for excellence. If 4x BEP failed, it's time to get the experts in on his case.

Dave

[Paul54]

Justin's Dad:
As a dad of two young men, every case like this tears a piece out of my heart. To say that we hate cancer is an gross understatement.

I can't speak to your question from personal experience. Over my almost 5 years here, I can tell you about many cases where guys and their families have battled through similar diagnoses and are back to normal lives. My best advice is to get to a center of expertise like Indiana University, Memorial Sloan Kettering or Dana Farber, and be aggressive as hell.

Your son and your family will be in our hearts and prayers.
Paul

[CW406]

This doesn't make a whole ton of sense, frankly, and I'm sorry that you're late to the game here.

We need background:

-What was the primary tumor composition?
-What was his marker profile like at DX? After?
-Did he achieve complete remission after chemo according to markers? You say "low" - how low?
-If not, why did they do the RPLND?
-What did the RPLND pathology come back with?
-What were they radiating? They don't radiate necrotic tissue. They don't radiate teratoma, I don't think. And they don't radiate somebody with an incomplete response to chemo right away, as far as I know, unless there is imminent danger of tumors pressing on something important. What have they been radiating for 2 months? If he had an incomplete response to the BEP, he likely should have gone on to a stronger regimen. Radiation in TC is not usually curative, alone - it is used to knock down danger spots and as adjuvant treatment for disease with a very predictable path of spread.

Unfortunately there are a lot of grey areas where it's tough to piece together. But, I agree that you need to get to a center of excellence ASAP. I agree with Aegean - with this kind of nasty stuff these days they tend to skip anything intermediate and go straight to the HDC (I believe it lessens the likelihood of developing refractory disease as opposed to trying and failing something like TIP).

[Wesmom]

My heart goes out to you and your family. The guys here have already given you their opinion. I would try to get your son to one of the places these guys recommended ASAP. Please keep us posted.

[ryder]

Hi There!

Cancer tricked us once. My husband finished his 3BEP, his tumor markers were low but still there so he was off to start HDC, in order to clean up the rest that remained, they started him on a chemo combination called ICE that was to kill off some of the cancer or at least keep at bay and assist in the collection of his stem cells. But this protocal did not work on my husband and before we could even start HDC, his cancer had spread to his spine, new mets in lungs and to his brain. It didn't mean we were out of the game, just had to take a different route. It set us back but the doctors didn't feel it changed what we had hoped the outcome would be. Hang in there, like an battle, some times you need a different game plan, I am guessing your son will be off to the HDC route which is highly affective.

Take Care
Dawn Ann

[evstar18]

Hey everyone, I have a question and don't know if any of you have encountered this before. My son was diagnosed with Stage 3 in November 2011. He had an Orchiectomy the day after it was found but already had retroperitineal mets, and spine involvement. The spinal tumor compressed his spinal cord and he needed emergency surgery after losing feeling from the waist down. It was a mixed germ cell tumor. He did 4 rounds of BEP, had an RPLND in March, and is just finishing up TruBeam and Cyberknife Radiation.

On his most recent CT Mapping scan for radiation they found spots on his lungs. We got a full CT done and found metastasis not only in the lungs but on the liver. He is getting an MRI on his brain tomorrow to check for mets there also. My question is, has anyone been near the end of the treatment "road" (low tumor markers, original tumors gone) only to get hit with NEW metastasis? We are all a little scared here as to what it could mean....any advice, help, stories??

JustinsDad

11/22/11 diagnosis 11cm mass left testicle, 9cm retroperitoneal mass, 4cm spinal mass 3cm lymph node mass
11/23 Orchiectomy
12/1/11 Emergency Laminectomy to relieve spinal pressure
12/16/11 Started 4 rounds BEP
3/17/12 RPLND done
5/20/12 Started TruBeam Radiation
6/19/12 Started Cyberknife Radiation T8 spine
6/18/112 New Metastasis found[/SIZE][/I]

Hey there so what you have described is rare, but not unheard of. We say this a lot in this forum but in your son's case it is particularly true, "you need to get to a centre of excellence" which simply means that you need to go to a hospital that deals specifically with cancer and preferably a doctor listed in the experts section of this website". the doctors will likely say that you need to begin HDCT or high dose chemotherapy. it is a hard route, but it works.