Fiance' newly diagnosed

[emilyalex]

Hi all. I’m new to the forum. First, thank you all for all of the information you share. It has been very helpful with all the research I have been doing on my fiancés illness. My fiancé was diagnosed on October 19, 2006, with advanced stage III retroperitoneal extragonadal non-seminoma germ cell tumor. They told us he has a mass above one of his kidneys and “spots” in his lungs, kidney and liver, 2 spots on his brain (one doc said 4), one malignancy in his stomach and he had a swollen lymph node surgically removed that was malignant. Fortunately, a bone scan showed no sign of the cancer - at least not yet. I guess that’s the only place it hasn’t gone. He had his first round of BEP on 10/20 and also is having low dose radiation for the brain lesions. That treatment is a bit in question for us right now, but we are too scared not to continue it. His HCG was a little over 100,000 when diagnosed, down to 60,000 last Thursday and at 20,000 yesterday. For right now, it certainly seems that chemo is working. No one has mentioned the AFP level to us. He developed a blood clot due to the port a cath and has been hospitalized all week, but feels just fine. First round of chemo didn’t cause him any problems at all. I assume when chemo is complete they will most likely remove the retroperitoneal mass. That’s what I’m expecting, anyway.

We bought Lance Armstrong’s book and besides where the cancer metastasized, my fiancé has had very, very similar experiences as Lance, even down to the initial HCG levels (we might be a little more advanced in terms of the spread). My fiancé is also very athletic and I am hoping that increases his chances of beating this. I know we have a very long road ahead of us with this complicated illness.

I reached out to Dr. Einhorn, who I must say is a true God send, last weekend and he has been consulting with us ever since. I am taking my fiancé to Indiana on 11/17 to meet with Dr. E. Although we live in Houston, near MD Anderson, they are not experts in dealing with this type of cancer and I want to go where the knowledge is. That is in no way a slight against MD, I just know that Dr. E is a specialist with these difficult cases. I am scared beyond belief, but Dr. E told us that he has treated people just as advanced and some even worse, and I guess at least some of them survived.

Anyway, thanks again for all the info you share and thanks for listening. I pray for all of you who are dealing with this cancer. I certainly know now that life is never the same after the “C” word, whether you have it yourself or you are the caregiver taking care of the patient.

Emily

[dadmo]

Emily:
Welcome. I'm glad you found us but what's more important is you found Dr. Einhorn. Great Job. If you have any questions please feel free to ask. The forum now has over 2000 members so between us all we have seen just about everything. Good luck with the treatment and please keep us in the loop.

[Karen]

I certainly know now that life is never the same after the “C” word, whether you have it yourself or you are the caregiver taking care of the patient.

Emily

Emily,
Welcome. No, life is never the same, but you will pull strength from your inner self that you never knew you had and that will always be with you as well. Hang in there and keep us posted on how you fiance and you are doing!

[Karen]

Emily,
Don't know if you've looked at this yet http://tcrc.acor.org/egc.html

[emilyalex]

Hi. Thanks for your replies and for the info. I think I have looked at just about everything on the internet that even remotely addresses EGCT. I've looked at what it is, statistics, case studies.......you name it. When we were diagnosed, I felt that overwhelming urge to get out there and not only learn about the monster we were dealing with, but also to find out if we could beat it. The stats aren't very encouraging, based on my fiance's numbers and the metastases that he has. I'd be feeling pretty low if we hadn't gotten some hope from Dr. Einhorn. I finalized everything with his office for our 11/17 visit just a little while ago.

Seems like what we're dealing with is less common and since the metastasis is outside the testicles, we didn't have some of the signs you might associate with TC. He was having severe lower back pain (where the tumor is), a dry cough and eventually, lack of appetite and feeling full after just a little to eat. Then his lymph node swelled. This all happened literally in a few weeks. Thankfully we had an excellent gastroenterologist, who we engaged because we thought we were dealing with a gastro problem, who immediately got moving when he realized what he might be dealing with. We just thought the back problem was a separate issue, something orthopedic. Never in a million years did we suspect cancer, of any kind.

Thanks again for everything. It's great to have an outlet for talking about this, especially with people who have been there and understand!

Emily

[Lori]

Hi Emily, sounds like you are doing all the right things. I must concur, finding Dr. E is a godsend. My husband was diagnosed with stage III in May and after three rounds of EP the markers were not consistently moving down. We went to visit Dr E on 8/1 and after that moved to Indy for 8 weeks to be under his care. He, his staff and the culture he has fostered at IU is just incredible. My husband finished high dose chemo and moved on to surgery of the chest/neck to remove tumor and we are back for RPLND surgery on 11/16 with Dr. Foster. Not sure how long you are staying in Indiana for your visit, but if I can be of any help please let me know. I'll simply be hanging in the hospital with Jon from the 15th to sometime the next week. Send me a personal email and I'll send you my cell phone number.

Good luck with your visit and the rest of your fiance's treatment. I'm sure he will do wonderful, as will you!

Lori

[Scott]

Hang in there, Emily! We're family now.

[JAYHAWK]

Emily, I highly recommend that you utilize the TCRC as there is a wealth of experience and information available from the people there - while I am fortunate to be stage 1 seminoma - I would suspect that there is no condition that has not been confronted by someone at that site. I live in the Klein area near Klein High School, and I was referred to a medical oncologist in the medical center by both my urologist and a friend who is a doctor, and while not on the TCRC expert list he is very experienced with TC treatment (he is also a urologist). Please contact me if I can be of any assistance ([email protected]).

[Individuation]

I just wanted to send you wishes of strength and peace.

My boyfriend was diagnosed with cancer last January, and I was his primary care taker. It's a difficult road. Be strong and don't forget to take care of yourself.

I hope your outcome is the same as ours... he finished treatment in June and is cancer free and back to his old self.

Take good care,
Eileen

[emilyalex]

Hi everyone. Again, thanks to all of you for both words of advice and encouragement. We have just come home from the hospital today. He had to stay for another week due to a blood clot in his arm on the port a cath side. We're gearing up for his second round of chemo sometime end of next week. Our trip to meet Dr. Einhorn on the 17th will likely be delayed because of a delay in the next chemo, because of the blood thinners he is on, low counts last week, etc. (Lori, I sent you a private message, but not sure if you got it. I'm kind of new to this and may not have sent correctly. If we are in Indiana during that week, I would love to meet up with you).

I'm sure this is completely common, but we can't get anyone to commit to saying that chemo is "officially" working, even though his HCG is down from a bit over 100K at diagnosis, to 20K as of Thursday. So far, he's had no nausea and his appetite has been great. His hair is finally coming out, though. Between the brain radiation and chemo, we knew it was coming soon. I don't really care if his hair never comes back, as long as he is cured of this. I know how seriously ill he is, but sometimes things the doctors say drive the point home even more and scare me. One doc today mentioned the possibility for bleeding of the brain lesions. Scared the heck out of me. But none of this is easy, so I am learning to expect the unexpected and to just try to take what they say, absorb it, go read everything I can find on the internet about whatever they say, and move on with things. And, of course, I spend a lot of time here, learning from all of your experiences, too.

I hope that everyone is out there getting nothing but good news and positive results. I hope to be telling you good news about us soon!

Take care.

Emily

[dadmo]

Emily:
Yes the road ahead will be full of surprises, but your taking all the right steps. Staystrong.