Treatment Update - High dose/Surgery

[Lori]

I thought I'd post a summary of my husband's treatment in case it may help someone in the future.

5/22: Diagnosed w/ majority immature teratoma, seminoma and yolk sac. HCG normal; AFP 244
6/5: Started 4xEP on 6/5 - his birthday.
After the third round the AFP was still fluctuating up/down and the HCG just appeared. We went for second opinions at Sloan and Indiana and all agreed high dose was needed.
8/16: Started tandem high dose chemo with stem cell transplant at IU under care of Dr. Einhorn. HCG at 55; AFP 120ish
9/25: Officially finished - HCG normal; AFP 37. Jon did the entire treatment outpatient and I credit that to his insane amount of water intake (no less than 64 ounces a day on top of the hydration in the hospital), his daily walk and awesome spirit.

Part of Jon's TC disease was bulky mediastinum disease. Basically he had a tumor throughout his chest up to each side of the lower neck and also in the abdomen. The tumor in the chest and neck continued to grow throughout all the chemo treatments. Since teratoma doesn't respond to chemo, we knew from his initial pathology report he would need extensive surgery. We also knew that with the amount of tumor, the odds were there would be live cancer found in the tumor. But our hope and Dr. Einhorn's speculation was that the immature teratoma was responsible for the growth and the continued rise in AFP.

Jon went in for thoracic and neck surgery on October 9th. The thoracic surgery took about 4 hours and the neck surgery took 3 hours. He was in the hospital for 9 days. In total they removed about a 2 pound tumor that was wrapped around the nerves and arteries in the chest, but had not penetrate the lung wall. The best part - the entire tumor was immature teratoma - no live cancer! Our surgeons were Dr. Kessler (thoracic) and Dr. Weisberger (ENT) - I highly recommend both.

His next step is the RPLND on November 16th with Dr. Foster. We are again hoping for teratoma. I'll be reading back through posts to get insight on the RPLND and recommendations on how to handle. Like so many other men, Jon's treatment has been a long difficult road. But we are starting to see the light at the end of the tunnel.

If Jon or I can ever be of help by answering questions on teratoma, mediastinum disease, high dose, or anything - please reach out to us.

Thanks to everyone on this forum for posting their personal stories - each one can and will help another.

[Russell's Mom]

It will be worth the effort!!!

Thanks for sharing! Incredible amount of work! I can only think that the worst is over. I would think that the node disection will be less difficult. This is the third day of round 4 for my son. Not much reserve here, but wanted to wish you luck and lots of energy. You are keeping the train on the track!!! Take care, Sharon

[Fish]

Glad to hear the thoracic surgery was a success and only revealed teratoma. I hope the RPLND goes well. You've both been through enough.

Best wishes.

[Karen]

Lori,
Thanks for the update and good news that only teratoma was found. Best wishes to Jon on this recovery and getting ready for the RPLND. Sounds like the worst may very well be behind you !

[cbuysse]

Lori, so good to hear it was teratoma. Sounds like the worst is behind you and I wish you both the best of luck going forward. Let your husband know that my birthday is also 6/5 and that was also my first day of treatment. I was diagnosed on 5/3. I almost fell out of my chair when I saw your post that your husband's birhtday and start date were the same. TC is rare enough as it is what are the odds of that. You'll both be in my thoughts and prayers.

[dadmo]

Lori:
That's great news. This won't surprise anyone here, but for a disease that is about 95% curable the amout of work to get to 95% is amazing. The members here who have had to battle the disease certainly have my admiration, they are to the last man warriors.

[indiana9]

Lori,
Best of luck to you and your husband on the 16th and forward. As I am sure you are aware, Dr. Foster is the best surgeon in the world when it comes to the RPLND. I hope he has Stacey as his nurse after the RPLND as she was wonderful. I was 48 years old last March when Foster performed my surgery to remove two large growths post 3XBEP. I awoke after surgery in a regular room with a neck IV for fluids/morphine and a catheter, nothing else and was released to go home less than three days after surgery. The catheter was out in less than 24 hours. You guys will do great and my wife and I will keep you both in our prayers. I feel great now 7 months after surgery and he will too!
Brian

[Lori]

low fat diet before RPLND?

Brian, thanks for the email. Shared with my husband and picked his spirits right up.

Has anyone that has undergone the RPLND post chemo been put on any type of special diet before the surgery? Anything else they did before the surgery to get ready?

Thanks!

[dadmo]

Sloan Kettering really pushes (demands) that you go on a low fat diet prior to and for several weeks after an RPLND.

[Lori]

All Teratoma after RPLND

My husband had his RPLND on Nov 16th. Yesterday at 4pm we got the call that the masses were all Teratoma. Post the chest/neck surgery (Oct 9th) his HCG was still normal and AFP down to 15. Dr. Einhorn was ecstatic over the AFP as it confirmed our suspicion that the masses were emitting a slightly elevated AFP marker. Follow up in 30 days and then 3 months of oral chemo (Einhorn's regiment after high dose)...but for now we are so very, very thankful. This will undoubtely be our best thanksgiving ever!

[djmac]

Great News!

Happy Thanksgiving! Enjoy it, you two certainly have a lot to celebrate!

djm

[emilyalex]

Jon's update

Hi Lori. So, so glad to hear that Jon is doing well after surgery and that the result was good news. Hope you have a wonderful Thanksgiving. You really do have reason to be thankful this year and I am very thankful for you both, too. Please keep us all updated on his continued recovery from the RPLND!

Emily