Yay!

[mstlyn]

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.

We were in the middle of scans at U of M, to get my son scheduled for RPLND, when his AFP began to increase again. His oncologist wanted him to have more chemo. I contacted Dr. Einhorn and he told me the same thing that he told you; NO CHEMO .. he needs surgery.
He said that if his AFP did not normalise, or began to increase again after RPLND, then he needs high dose w/stem cell transplant.

I took Dr. Einhorns email with me to show the doctors at U of M as they were discussing the type of second line chemo they would be giving my son.

Needless to say, the chemo was scratched and the surgery was back on.

Your post is the first that I have seen with the same advice that we were given.


I have a letter from U of M recommending again, that he gets more chemo since his RPLND is over.

I trust Dr. Einhorn .. we are just watching his AFP. If he needs more treatment, Dr. Einhorn will be taking care of that.

[Russell's Mom]

Hi, Just caught up with this thread. There is a free Second Opinion Group in San Fransisco. Top of the line doctors there. It is very easy. After releasing your autorization for them to view your records, they contact your care centers collect and review, then will meet with you and/or tape their review. The doctors are some of the best that I have seen. Let me know if you need more info by PM and I will give you my phone number. So sorry that I did not catch this earlier!!!!

Regional Cancer Foundation-Second Opinion on Gough Street in SF.

Again, these docs are doing this totally free. I believe that they sit on the top of Maslow's chart!! take care, Sharon

[ebfun7]

Any news on tumor markers?

Dollfin1204

Any news on Steves tumor markers? I checked the website and did not see anything. Just wanted to check on you guys. Let me know if you need any advice or help.

Erin

[dollfin1204]

Thanks for that link Dadmo, I will use it.

[dollfin1204]

I am hoping that we won't have to go with Plan B. That would be WONDERFULL!!!


We have actually already had a Charity Golf Tournament to raise money for Steve. We are talking about having another soon. It has been a great help.

[ebfun7]

Insurance

I see you are in CA. What about looking into treatment with one of the testicular cancer experts there (I know one is at UCSF one is in LA area) and see if they will follow Dr. Einhorns' high dose plan there and maybe getting MediCal (not sure if that is what it is called) to cover it? You need to make sure he is somewhere who knows what they are doing when it comes to high dose because it is dangerous but effective. I know when we were in Indiana there was a guy there who paying out of pocket for high dose. His family did many fundraisers to help cover the cost. I think out of pocket it was in the $200,000 range. Not positive about the exact cost though. Regardless I would still get Dr. Einhorn's opinion even if you have to pay out of pocket for a consult. Or better yet have your local oncologist consult him. He is great about talking to people and doctors. Our local oncologist called him while we waited in his office and got advice on how to treat my husband when he was diagnosed. I would call the TC experts in CA and see if they do high dose there. Hope this helps.

BUT..you may not even need all this info. :-) The markers may continue to go down. That would be the best case scenario.

[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.

[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?

[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.

[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)
[email protected]

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

[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

[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?

[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.

[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.

[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.