to scientists/MD's/drug companies and others, HELP please

[dannysbrother]

PLEASE FEEL FREE TO COPY AND PASTE TO ANY AND ALL WHO MIGHT HELP.

DANNY'S STATS:
Diagnosed July 2006, TC non-seminoma, choriocarcinoma
Elevated HCG 470,000, mets in liver, lungs, abdomen
3 rounds BEP, 1 round EP-- HCG down to 72 and rising.
Brain Mets found, radiated. Brain Mets stable, No activity.
3 rounds TIP--- HCG down to 7 and rising.
Enrolled on Clincal Trial: FOLFOX 5fu + Flavopuridol, 7 rounds--- much success. Stablized all disease in liver, abdomen except for new mets in Right Lung. rising HCG currently at 12,000.

Danny is strong, high energy, out everyday.


I have some very difficult news. Danny was taken off of the Flavopuridol study this week. His HCG level has doubled since his last treatment. It is the last thing we ever wanted to hear.

We are now frantically trying to figure out what is next. We are looking for other clinical trials and second opinions. We are looking for a little hope. It looks like Sloan is recommending single agent chemo. Either Gemcitabine or oral itopiside. There are trials at Sloan that his doctors would enroll him in and he could qualify for but they are full.**

We understand the situation but we are not giving up. I believe there must be something out there that can help him.

I have been searching non-stop for clinical trials around the country that include several different very new approaches to fighting cancer. One is happening at Sloan and was thought be a viable option for danny but is closed, another at Columbia in NYC and is also closed and a few others that I can find that I have not been able to get an answer on. I am looking for clinical trials in Solid Tumors (does NOT have to specify TC) of drugs that include:

B-raf, MEK, H-DAC

1. Raf kinase inhibitor (B-Raf)

or

2. MEK Inhibitor

or

3. H-DAC Inhibitor

I found one study being done in cooperation by Indiana/Duke/Vanderbilt/Penn Prys that actually combines an HDAC Inhibitor with Gemcitabine. I'm not sure at this point whether it is open at the moment but it sounds like a good combination of drugs. At least the Gemzar is thrown in, which we KNOW has activity in TC.

Can any of you scientists/MD's and or people with connections out there tell me:

A) Does the HDAC inhibitor work similarly to the MEK and B-raf?

B) Are there any other inhibitors that work similarly so that I can broaden my options in searching for trials?

C) Are you aware of any study being done anywhere that includes a new drug in development that that uses a similar method of killing cancer cells?

I do realize that these drugs are new, experimental and would be a crap shoot in treating danny's disease. However, they have shown promising activity in certain cancers I think it's time to introduce it to TC and more specifically, danny.

Vaccine Therapy

Also I have been made aware of another line of experimental treatment known as "Vaccine Therapy" for advanced solid tumors.

Recent closed studies and a few that I see online that may be open include:
1. recombinant fowlpox-CEA(6D)/TRICOM vaccine

Has anyone heard of any activity of this or other vaccine agents in solid tumors and/or any open studies currently taking place that involve vaccine therapy?

High Dose Chemotherapy

Also, I would like to very quickly consult with a wider variety of Doctors for second opinions and other thoughts on experimental treatment options. Also, we have been told at Sloan that danny is NOT a candidate for High Dose Chemotherapy because of the risk of brain hemorrhage. (He had brain mets that were radiated in November and have shown stable scans and NO activity for many months) We are told that the risk is too great to perform High Dose. Danny's feeling is that if he going to die of cancer eventually, he would be willing to take the risk of undergoing HDC if there is a chance at stabilizing his disease regardless of the risk that HDC presents to his life. He is not in favor of palliative care that might prolong his life in the short run, he is in favor of aggressive treatment that might lead to stable disease. I understand that the principles in the United States may be different then around the world. Isn't it true that Doctors in Germany, France, The Netherlands, Canada and else where might be more willing to perform HDC in the face of risk then Doctors in this country? We are able to travel anywhere. Might a doctor overseas be more willing to go back to a regiment he has not received yet such as VIP, whereas at Sloan they are limiting him to single agent chemo.

1. I'd like to know REALLY what the HDC risk is in Danny's case.
Is there a 50% of fatality, 50% chance of disease stabilization? If that is the risk and a doctor somewhere would be willing to try, I believe Danny has the right to that making that choice.

2. Can anyone provide the names and contact information for top germ cell doctors around the world? Does anyone have any connections so that I may speak them very quickly, summarize danny's case and get an initial opinion on treatment options they would be willing to provide

3. Does anyone have a suggestion of a Doctor in this country who might be willing to try something unusual? I am aware of a patient currently in Canada who had VIP, HDC, Sutent and now is on a regiment of BEP, so I know that there ARE places that don't resign to single agent chemo at the point danny is at.

Others

Does anyone know about what the following are?

1. 17-N-Allylamino-17-Demethoxygeldanamycin (17-AAG)

2. 5-Fluoro-2'-Deoxycytidine and Tetrahydrouridine


Thank you in advance for any information or direction anyone might be able to give. Information on these drugs and/or clinical trials that are happening that involve these or drugs similar to these would be all welcome.

Everything at this point is a shot in the dark. I know. Danny is technically incurable, I know that too. But I also know that 'you never know.'

Danny is very strong. He is going out everyday with alot of energy. He looks and feels good.

We are not giving up. Something unknown and relatively unused might stabilize his disease.

Thank you again,
Michael Aurit

[dannysbrother]

These are the new parts added:

DANNY'S STATS:
Diagnosed July 2006, TC non-seminoma, choriocarcinoma
Elevated HCG 470,000, mets in liver, lungs, abdomen
3 rounds BEP, 1 round EP-- HCG down to 72 and rising.
Brain Mets found, radiated. Brain Mets stable, No activity.
3 rounds TIP--- HCG down to 7 and rising.
Enrolled on Clincal Trial: FOLFOX 5fu + Flavopuridol, 7 rounds--- much success. Stablized all disease in liver, abdomen except for new mets in Right Lung. rising HCG currently at 12,000.

High Dose Chemotherapy

Also, I would like to very quickly consult with a wider variety of Doctors for second opinions and other thoughts on experimental treatment options. Also, we have been told at Sloan that danny is NOT a candidate for High Dose Chemotherapy because of the risk of brain hemorrhage. (He had brain mets that were radiated in November and have shown stable scans and NO activity for many months) We are told that the risk is too great to perform High Dose. Danny's feeling is that if he going to die of cancer eventually, he would be willing to take the risk of undergoing HDC if there is a chance at stabilizing his disease regardless of the risk that HDC presents to his life. He is not in favor of palliative care that might prolong his life in the short run, he is in favor of aggressive treatment that might lead to stable disease. I understand that the principles in the United States may be different then around the world. Isn't it true that Doctors in Germany, France, The Netherlands, Canada and else where might be more willing to perform HDC in the face of risk then Doctors in this country? We are able to travel anywhere. Might a doctor overseas be more willing to go back to a regiment he has not received yet such as VIP, whereas at Sloan they are limiting him to single agent chemo.

1. I'd like to know REALLY what the HDC risk is in Danny's case.
Is there a 50% of fatality, 50% chance of disease stabilization? If that is the risk and a doctor somewhere would be willing to try, I believe Danny has the right to that making that choice.

2. Can anyone provide the names and contact information for top germ cell doctors around the world? Does anyone have any connections so that I may speak them very quickly, summarize danny's case and get an initial opinion on treatment options they would be willing to provide

3. Does anyone have a suggestion of a Doctor in this country who might be willing to try something unusual? I am aware of a patient currently in Canada who had VIP, HDC, Sutent and now is on a regiment of BEP, so I know that there ARE places that don't resign to single agent chemo at the point danny is at.

[Russell's Mom]

I've not heard back from anyone yet. I have printed the new information and will carry with me. You energy is blasting right through the computer. These are the things that break through to new findings. I do believe in miracles!!!
...Japan, China, Pubmed, Oxford Journals...thoughts running through my head. Lovestrong Sharon

[Eric]

Do you know which city in canada?

I can try to make phone call.

Also have you tried all the doctor's link in TCRC ACOR? Even the canadian ones?

[Russell's Mom]

Come on everybody, lets put the foot to the floor board for Danny. The people at this level of research are more than helpful. This is the energy that breaks the boundaries of our current limitations. I'm more than willing to stir the energy from the bottom of the pot.....this is more than worth it and helpful to all involved and those to come!! Livestrong!!!!! Sharon

[dadmo]

Michael:
One of our longest threads on the forum has to do with Patrik Oakes. He was diagnosed with stage 4 Rhabdomysarcoma. He was not expected to survive the diseas but a year and a half later he's doing great. You may want to read some of this thread to get an idea of the condition Patrik was in. I know you're a night owl and this all happened in Australia so your timing might be perfect. I just sent you a PM with Paul Oakes home number. Don't wait for him to check in just give him a call and I'm sure he will get you intouch with the doctors that treated Patrik. I know it's a different disease but his doctors were very creative in curing him.

[MRMRSU]

Mikey: I didn't have your email address...hope you got my PM's. Sorry I had to send it in two parts...forum mailbox said it was too long of a message to send all at once.