Introduction and request for info

[obi-ron]

Hello, I'm new here and am looking for a good support group for the wife of a friend of mine. He was suddenly diagnosed last Friday and was started on chemo monday. Is this the best one, or is there another that would be more appropriate for her?

I am a survivor (so far)of prostate cancer so I understand the emotional and technical aspect of this type of disease. I became un-involved in PC support groups when I felt that I couldn't handle the loss of any more good friends and I needed to focus on the adoption of my beautiful new daughter who is now 5-YO. So, I guess that I can't escape involvement. I don't have a lot of time to research this so I am trying to get the most information in the shortest amount of time.

So much for me. My friends name is Bill (No! Really!) and this is the info that we have so far. His wife, and mine, will be meeting with the oncologist next Monday, so I'm trying to get them up to speed ASAP.

He has "primary mediastinal non-seminoma germ cell tumor. it's extra
godanal germ cell. The doctor said 50/50 chance of survival. I asked if they did bone marrow scan. He told me that it wouldn't matter since if it's in the bone marrow, the chemo would take care of that. Bill's chemo consists of Bleomycin days 2,9, and 16 and cisplatin and eotpiside everyday for 5 days in a row and repeat every 21 days for 3 to 4 cycle. After the 4th, they will consider surgery.

What do we need to know and what are the most important questions to ask?

Thanks
Health, Healing and Happiness.

[Scott]

Welcome, and all our best wishes to Bill and his wife. We've got a very good support community here. I also highly recommend the TC-NET mailing list. You've probably already found the TCRC page on extragonadal germ cell cancer.

[dadmo]

First you must check out the links Scott provided and on the tcrc page take a look at the experts list. Extra Gonadal can be hard to treat and in my opinion should be treated with the oversite of a center of excellance.

For Bill's wife this is a wounderful support group, if she visits us she will find lots of wives and mom's to help her through this battle.

[obi-ron]

Thanks Scott and "Dadmo". I have to get my 5 YO to bed right now, but I will follow up on your recommendations in the morning. I can see that, like the PCa support groups I've been with, you are a real source of comfort and information during this time of crisis for me and my friends

Health, Healing and Happiness
Ron

[emilyalex]

Ron - you have definitely found a wonderful group of people on this website. I may be able to offer you and Bill some help, as my husband was diagnosed with non-seminomatous retroperitoneal extragonadal germ cell tumor in October 2006. He went through the four rounds of BEP chemo, finishing his last weekly Bleomycin on January 5, 2007. Within a month his tumor markers began rising and we have moved on to High Dose Chemo with Stem Cell Transplant at Indiana University.

Let me preface this info by saying I am offering only my opinion from my experience. Once we discovered how difficult non-seminoma is, I sought assistance from Dr. Einhorn at Indiana University. He is a TC expert and is very good at treating advanced/difficult cases (I'm sure there are others on the TC expert list, but Dr. E was my choice). He has been very willing to work with our oncologist in Houston, TX, and was instrumental in getting us to IU quickly for High Dose Chemo. If you would like info about getting in touch with him, let me know with a private message. I will be glad to give you my phone number for either your use or for Bill/his wife to call me.

In my mind, it is important to find out if Bill has elevated tumor markers. The two important tumor markers are Beta HCG, usually referred to as just HCG and the alpha feta protein, referred to as AFP. And of course, it is imperative to know whether or not the cancer has spread and if so, how far. I hate to disagree publicly with doctors, but I would think it was critical to do a bone scan, once CTs and MRIs are done. I think the most important thing in all of this is to make sure that no treatment is delayed. EGCT can spread very fast and days count.

I'll be glad to talk to you, Bill, his wife, etc., if you think that would help. Having just been through all of this, I am sure my husband and I can offer you some assistance. You are a good friend for seeking out this information for him.

Emily