Yay!

[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.

[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.

[dollfin1204]

Thanks for that link Dadmo, I will use it.

[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

[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

[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.