Yay!

[Ampaman]

woohoooo!!!

[roydeste]

WOOOOOHHH..Great news!!!

[Margaret]

That's GREAT news Dawn!!!!!!
I am so happy for you both

...Steve and I go in on Tuesday for his CT Scan results and HCG count

You and Steve will be in my prayers. I know this has been a difficult journey for you two as well. I hope people will see your wonderful web page, it is a great example about people loving and caring for another.

Hugs,

m.

[Fish]

Excellent news Dawn!!!!!


Best of luck to Steve!

[dollfin1204]

Thanks Fish and Margaret.
We went to the Dr. yesterday and got the results of the CT Scan. It showed improvement but still some sopts on his liver, lungs and lymph nodes. We dont know yet if they are dead or alive cells. We once again have to wait for the results of his HCG markers. I'll be calling the nurses in a few days to get the marker count. If the markers have gone up at all Steve will start VIP. Other wise the Dr. wants to wait until Steve's next appt. (Oct. 2nd) to see if the counts have come down on their own. If they are not at a normal range by then, the Dr. wants to start VIP then too. I am trying to not to worry or stress about it to much. I don't want to drive myself crazy for the next month.
Steve and I are on a mini vacation right now in Palm Springs. We wanted to get away and have a change of scenery for a bit. We can't do much, but at least a different room and a nice view will help Steve feel better.
Please continue to keep us in your prayers.

[Margaret]

I know that you both are fighting a huge battle right now. I am glad you got to go away for awhile, enjoying time together is important. I will pray for low numbers.

Hugs and prayers,

m

[milwaukeejoe]

I am hoping that Steve's markers come back down. However, I wanted to touch base regarding an alternate route of treatment, in the event that they do not. I know that things move quickly, and that you might move right into VIP if the HCG is elevated, so I thought I should write now.

I also have choriocarcinoma, stage IIIC. In April of this year I was in the situation of having been through four rounds of BEP, with a good response, and then having HCG start to go up again after only a month. We immediately looked into the next step, and initially assumed that we would go with the traditional "salvage" (awful word) chemotherapy (i.e. VIP).

However, Dr. Einhorn at Indiana University said that we should move directly to High Dose Chemo, and, of course, we did. Dr. Einhorn is advocating HDC as second line chemo, as opposed to third or later, which had been the approach historically, especially in patients with advanced disease. He published a paper in the New England Journal of Medicine in July of this year that revealed slightly better results with such an approach, especially with patients who are chemo-refractory. http://content.nejm.org/cgi/content/short/357/4/340 and http://oncology-hematology.jwatch.or...ull/2007/725/1 (If I've got the findings of the study wrong, I'll rely on the marketplace of ideas on this site to point out how.)

I don't know if you are in touch with Dr. Einhorn or not, but if not, you should get in touch with him before jumping right into VIP as salvage or even as induction chemotherapy (i.e. as "pre-HDC chemo"). There really is nobody better in this area, and I trust him implicitly.

Again, hopefully all of this is not an issue, and you can go about your lives. But, as you know, it is good to be prepared. Best of luck to you.

[ebfun7]

Second line chemo ( I refuse to call it salvage)

I just wanted to write and say I agree with the above posting. My husband had advanced disease also. We saw Dr. Einhorn and he recomended high dose and stem cell as second line treatment not VIP. He was very clear about this. It worked too. My husband has been in remission for 14 months. You may want to consult with him BEFORE moving forward with VIP in the even the markers go up. He is the leading expert in the field and a second opinion never hurts.

[Margaret]

I am hoping that Steve's markers come back down. However, I wanted to touch base regarding an alternate route of treatment, in the event that they do not. I know that things move quickly, and that you might move right into VIP if the HCG is elevated, so I thought I should write now.

I also have choriocarcinoma, stage IIIC. In April of this year I was in the situation of having been through four rounds of BEP, with a good response, and then having HCG start to go up again after only a month. We immediately looked into the next step, and initially assumed that we would go with the traditional "salvage" (awful word) chemotherapy (i.e. VIP).

However, Dr. Einhorn at Indiana University said that we should move directly to High Dose Chemo, and, of course, we did. Dr. Einhorn is advocating HDC as second line chemo, as opposed to third or later, which had been the approach historically, especially in patients with advanced disease. He published a paper in the New England Journal of Medicine in July of this year that revealed slightly better results with such an approach, especially with patients who are chemo-refractory. http://content.nejm.org/cgi/content/short/357/4/340 and http://oncology-hematology.jwatch.or...ull/2007/725/1 (If I've got the findings of the study wrong, I'll rely on the marketplace of ideas on this site to point out how.)

I don't know if you are in touch with Dr. Einhorn or not, but if not, you should get in touch with him before jumping right into VIP as salvage or even as induction chemotherapy (i.e. as "pre-HDC chemo"). There really is nobody better in this area, and I trust him implicitly.

Again, hopefully all of this is not an issue, and you can go about your lives. But, as you know, it is good to be prepared. Best of luck to you.

M.Joe, I wanted to ask how you were doing with your treatment.

Also, I wanted to add that this post is a great example of why this forum is here. We are all so helped and educated through the experience of others.

[dollfin1204]

Thank you for all your advice. It really helps me out!
I have not yet been in contact with Dr. Einhorn. But I will email him.
Can anyone explain to me what the difference is between VIP and the others you guys mentioned? Is it harsher on the body?

[dollfin1204]

Can anyone please send me the link to Dr. Einhorn's contact info. I know I seen it somewhere in a thread, but I can' find it now.
Thanks

[milwaukeejoe]

Einhorn contact information

Lawrence H. Einhorn, M.D.
Hematology/Oncology
Indiana Cancer Pavilion
535 Barnhill Drive, Room 473
Indianapolis, IN 46202-5289

317.274.3515 (office)
leinho[email protected]

Einhorn's nurse is Jackie, and is super-knowledgable and friendly.

[ebfun7]

high dose vs. VIP

VIP is a chemo regiment using the following drugs; etoposide, ifosfamide, and cisplatin. In the past VIP has been used as second line chemo. These days Dr. Einhorn advocates high dose chemo and a tandem stem cell transplant as second line chemo. The drugs used in high dose are etoposide and carboplantin. These drugs are given in extremely high does and are followed by stem cell rescue. This is done twice. He has seen over 60% success rate (I thin the exact number is 66%) when high dose and stem cell is used as second line therapy. When it is used as third line the success ratio drops to much lower. From the article quoted earlier here is the exact numbers “Of the 135 patients who received the treatment as second-line therapy, 94 were disease-free during follow-up; 22 of 49 patients who received treatment as third-line or later therapy were disease-free.” When my husbands tumor markers went up we called Dr. Einhorn and without hesitation he said “he needs high dose and stem cell, NO VIP.” We left for Indiana within a week and my husband had the tandem transplant. If you need any more information let me know. By the way the only the only indication my husband had the transplants now is the neuropathy in his feet and his slight hearing loss. These things defiantly beat the alterative though and I firmly believe he is alive because of the high dose and transplants but mainly because of Dr. Einhorn’s expertise. I want nothing more for Steve’s markers to continue to go down and remain normal but if they do not I beg you get all medical records and consult with Einhorn before doing anything else. I always told myself that if my husband was going to die from testicular cancer it would not be because he got the wrong treatment. Dr. Einhorn once told us about half the people who die from TC a year are because they did not get the right treatment. I swore I would not let that happen to my husband. I am not saying that VIP has not worked for some people when used as second line but studies have shown that high dose and stem cell seems to have more of a curative potential then VIP when used as second line therapy. Good luck and again let me know if you need anything.

[dollfin1204]

Thank you so much! I really appreciate that. I understand it completly now. I guess maybe I need some things explained to me more than one

One set back, well I think its a set back but not for sure, is that Steve doesnt have insurance. He was in the process of starting his own business. Of course..our luck!

I know for sure the hospital we go to does not have clinical trials. But I need to find out about the route you guys are telling me about.
Steve has applied for medical, but we are waiting to hear back. Medical has now involed Social Security Disablity, which has made the process even longer.
Money is not an option right now, Steves health is. But I need to know how to go about getting treatment somewhere else without insurance. We have been competly happy we were are at right now. Our Dr. has been great, but like you guys mentioned I need to start planning on Plan B. Does anyone have any advice for me?

[dadmo]

You may want to begin your plan B prep by talking with the people at The Lance Armstrong Foundation. Here's the link to their Cancer Support page. Good luck.