New member 24 yo son with Mediastinal Nonseminomatous Germ Cell tumor

[MamaAng]

Thank you for contacting me. I'm so glad you're doing well and and that gives me so much hope!!! Where were you treated? I will definitely be in touch with you as your tumor is rare and not many people have direct experience. My son marries his high school sweetheart today in a quiet ceremony and we're hoping to have a huge wedding in December.

[digdoug]

I was treated at Kaiser in Northern California. Kaiser gets mixed reviews, but I think in my case, with the speed at which things were transpiring, Kaiser was the best option. They are a one-stop shop around here and they can get things done quickly.

It was hard to find hope in such rarity and in what were for me were already challenging and transformative times, but, seeing friends and family rise to the challenge really helped.

Knowing that your son's tumor responded to chemo seems like a huge, positive, first step. AFP also has a half-life so I think it can take some time for it to clear out if/when there's no remaining source.

Enjoy the wedding as best you can and congratulations.

[Trekga]

DIGOUG~ Glad you are doing well. Thankful you chimed in to MAMAANG.

MAMAANG~Congrats to your son. Praying for him!!!

[MamaAng]

My son was married on Saturday and I have to say, it was really special. We chose to leave all of our bands, pins, and buttons home and tried to forget about cancer for the day. But when our son, bald, beyond pale, with dark circles around his eyes spoke and said "if someone would have told me I'd feel this good today I wouldn't have believed them", there wasn't a dry eye in the room. We sent them on a little honeymoon and they'll head to the hospital for a CT at the end of the week. Next Monday we'll know how his 4 rounds affected his tumor and hopefully have a game plan.

[Trekga]

Congrats to your son and his new wife, sounds like a very special ceremony. Hoping that Monday brings some good news.

[digdoug]

MamaAng, I'm hoping you got some better visibility to your son's path ahead, and that it was positive. Waiting on results will, for some time to come, feel like a cliffhanger. Hang in there.

[MamaAng]

My son had his CT today and his doctor called him immediately after to say he has a blood clot near his port so he's now on blood thinners. Then called him an hour later to say, no only has the tumor NOT shrunk, it's a little larger than pre-chemo. But it's composition has changed and it is mostly cystic at this point and he wants to do surgery asap. He also wants to do an abdominal CT on Monday to make sure everything's clear along with blood work and to discuss surgery options. He said there's no point in additional chemo as it was ineffective at shrinking the tumor. What is he looking for in the abdominal CT? Should we be alarmed that the tumor hasn't shrunk?

[biwi]

If you re-read Dr. E's words you posted previously, he foreshadowed this. It sounds like this is relatively par for the course with mediastinal primary tumors. I would also be looking at surgery with an expert asap. Abdominal CT's are normal in TC, the lymph nodes below your diaphragm near your spine are a common site for TC to travel to. These are the retroperital (SP?) nodes.

[MamaAng]

You're right, thanks for the reminder and the calming words. We are seeing surgeons at Fox Chase but I really want them to see Dr. Ken Kessler who is Dr. Einhorn's recommendation.

[Trekga]

Blood clots are not unsual with ports, my son had same issue a few times. Deep breath, hoping you can see Dr. Ken Kessler. Is he at Fox Chase? As BIWI mentioned they will be looking at other nodes that TC often spreads to in the retroperitoneal area. The "cystic" part could be the chemo, as that is what some of my son's nodes looked like. They never did change in size from before chemo to after, but his were all in the retroperintoneal area. Hang in there!!!!!!

[digdoug]

I'm sorry to hear the first line didn't work out. It's scary AND concerning. I was in surgery the week following the news that chemo hadn't worked.

The abdominal CTs were frequent for me throughout and I'm still getting them every 6 months. I'd imagine they'll want the most up to date imaging for surgical planning.

I had clotting around my PICC line during my second cycle of chemo. I was on Lovenox for 2 or 3 months if I recall correctly. I never felt quite right with that stuff, but then again there was so much changing, it may have not been the culprit.

Perhaps your son's oncologist and/or surgeon would at least get in touch with Dr. Einhorn if they are willing. I know in my case having a voice of experience with this rare cancer was invaluable. The trick here though is that things must move quickly. The location and nature of the tumor put your son's heart, lungs, and venal trunk at risk. I went into surgery knowing that a bypass might be necessary, but in the end part of my pericardium and my upper left lobe were lost.

I remember, and will never forget, early on in my diagnosis Dr. Nichols just called me out of the blue. By that point I knew for certain he knew what he was talking about and knew that there were not many other people in the world that were in that position. I'm certainly not offering his expertise, but I can answer experiential related questions if you like. I'll message you my phone number. Call anytime.

Hang in there.

[MamaAng]

Hi Digdoug, I don't think I realized these circumstances meant the first line didn't work. His AFP has dropped considerably and we'll get new tumor markers tomorrow. The doctor said that his tumor is mostly cystic at this point so I guess I considered that good news. Surgery was scheduled for December to allow him to heal from chemo but now it'll be much sooner. Is there a correlation between tumor shrinkage and failure of chemo? We were under the impression that tumor shrinkage would be a "bonus" from chemo. His pre-treatment scans were all negative so his doctor doesn't expect any surprises tomorrow.

[MamaAng]

Hi Doug, Emailed Dr. E. and he said he's confident the tumor is also Teratoma as well as they increase in size despite chemo. He questions the abdominal CT as well. He says mid October is good for surgery based on his last course.

[digdoug]

Glad to hear you're getting help from Dr. E.

I was getting ahead of myself with the comment about the first line not working. Hopefully that AFP keeps trending down. Am I correct that they stopped BEP due to pulmonary complications, switched to VIP, but then stopped that protocol short? If so, it sounds like maybe they weren't satisfied with the outcomes of the VIP or just felt that with the growth that time was of the essence and took priority over doing another cycle.The failure indicator for me was a combination of growing tumor and rising AFP levels. I'm not sure I can answer your question about correlations in other situations though.

Throughout the process I tried to avoid being alone with the doctor because it's too much for a healthy person to digest. Put chemo-brain on top of that and it's a non-starter for me anyways. We had a newborn too so it wasn't always possible for my wife to help much with the lack of sleep thing happening. I had siblings and close friends come in occasionally. For example my sister who works in hospice care was there for post-op recovery since she had more background to draw from.

The timing of the surgery sounds very similar to mine as well. I was just about to start my third cycle of VIP when we learned it wasn't worth the risk, so I'd had time to recover enough from cycle #2 to be ready for surgery. Chemo brain for me tends to smear all those memories a bit though.

As far as the surgery goes :
* My intent is not to scare you, but I know I was not prepared for all the possible complications. Partly because things moved so quickly and also I didn't really have a choice in the matter anyways.
* I know for sure I overestimated the speed of recovery.
* It's quite aggressive and it's going to take time to recover, I'd imagine even for a young guy like your son.
* For me, the tumor and the lobe resected required a rib-spreader to make a hole big enough for removal and to allow for ample margins. Sort of old-school open-heart surgery.
* Wherever that incision is, it seems like it's going to disrupt core muscle. My incision started from my side and moved towards my spine. One rib was cut and then it fused back together.
* I was in the hospital recovering for a week after surgery, pain management was significant that they put an epidural in during surgery.
* I had two chest tubes, one upper and one lower, on the side that the incision was made.
* I probably slept with my head elevated for three months after
* My gut felt "re-arranged" and just not like normal me for probably 4 months, that was in part because the left half of my diaphragm was no longer innervated as a result of the resection which causes it to suck upward.
* My left vocal cord also lost innervation, I subsequently had a laryngoplasty to make speaking require a little less effort/breath.
* I lost some innervation on the front of my chest, the side the incision was on.
* I also developed a chyle leak, because so many lymph sites were cut. The chyle, solubilized fat that gets fed into your bloodstream, not sure where. It was leaking into my pleura, the sack surrounding your lungs. I had it drained twice, not pleasant. That stuff probably slowed my recovery down some too.
* If he loses a part of his lung be prepared for seeming loss of oxygen intake capacity. Running is not the same as it used to be for me. I can run now, but it's a much slower pace and much shorter distances

[MamaAng]

Wow...it's amazing you came out the other end of that surgery! Just to clarify, his AFP was 318 at Dx, 90 after 1st round of BEP, 50 after 2nd round of BEP, developed pulmonary toxicity and missed 1 week of chemo while they decided to switch him to VIP. AFP was 30 after 3rd round of chemo (1st round of VIP), and we find out tomorrow what his marker is after the 4th round (which is actually his second of VIP). Does that make sense? His CT on Friday showed the tumor was larger but more cystic. Dr. Einhorn suspects his tumor has teratoma in it.