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Hi Forum Family,
Apologies for our absence on the forum for this past short while. This past 10 days has been days of very hard, fast choices. On Friday, September 14th Danny had a busy day of follow up scans and appointments following his brain surgery. Everything went very well. The surgery had been a major success. As we were on our way home we got a call from Bosl's office. His HCG had come back and it was way up. Scans showed increased pulmonary mets in size and number, stable and lessening residual nodules in the abdomen and liver. The disease is still confined to his lungs but is progressing. A decision was made that Danny would not receive his second infusion of Gem+Epi. Instead, we were told that we would meet with Dr. Mozter early next week and Danny would start a clinical trial Sutent. We contacted Dr. Einhorn who agreed that Danny should NOT continue GEM+EPI and that Sutent was a very reasonable next step. He had nothing to offer in Indiana except for a trial of Avastin+Oxciliplatin, which would be of no benefit to Danny. He was glad to hear of the brain issue being 'taken care of' and maintained that if some therapy was shown to start to get the disease under control and get his HGG below 1000, HDC would be considered in Indiana.
We waited all weekend and Danny was prepared for Sutent. On Monday, we found out several things.
1. Danny would not be able to begin Sutent for another 2 weeks. Within the study parameters it states a patient must wait 4 weeks post surgery of any kind to begin.
2. I learned from a doctor/friend at Sloan that only a small handful of TC patients have been on the trial and got the basic breakdown of their cases. None had the kind of progressive disease that Danny has at the moment. The results thus far with these patients has been mixed.
So, the choice was: either wait 2 weeks for Sutent, which was highly unlikely or take Bosl's recommendation of treating Danny with older, very seldom used drugs for TC in the meantime. Bosl was recommending, really all that he had left to recommend, which was to go back 30 years before the advent of platinum. He was considering Actinomycin D or Vinblastine.
It was 5pm, we had our choices and none of us liked them. So, we added a third choice. Luckily, Scottsdale is three hours behind. I called TGen, set up an appointment for Danny the next morning for the molecular profiling study, Danny my dad and I packed nothing, jumped in a taxi for the airport and made reservations for the last flight out of NYC on the way to JFK. We did let Sloan know what we were doing before we got on the plane and they didn't object. Dr. Bosl had said several weeks earlier when we asked him about TGen, that "It would be interesting to see the results, but near impossible to get a frozen sample biopsy of Danny's tumor for analysis considering the necrotic nature of his tumors."
We had to take this chance. The next morning we met with the doctors at TGen, the only place in the country where such a study in molecular profiling for solid tumors exists, located about seven minutes from our house. For those our you who don't know, my family is from Scottsdale and they moved out to NYC temporarily for danny to receive treatment at Sloan. TGen already had all of Danny's records and scans which we sent weeks earlier and as they had told us over the phone, Danny met the requirements for the study. All last week was spent doing scans and tests. Danny had a lung biopsy, which was rough on him, and we've been waiting for the results to see if they obtained enough live tissue for the profiling. The waiting has just been excruciating. This morning we found out they got enough. It was a huge hurdle to get past. From this moment until next Monday afternoon, 24/7 testing will be done on Danny's tumor. Fed, you can explain it far better then I, but I think it's safe to say that this is the most extensive cutting edge analysis of tumor possible with today's technology. They will be looking for which genes and proteins are over-expressed in order to recommend a chemotherapy regiment which is directly implicated to kill Danny's cancer cells in order to attack Danny's individual disease; A drug, or regiment that may have never been considered or indicated in treating Germ Cell Cancer.
Thus far, they have told us that among the 45 of 92 already enrolled in the study they have seen some extremely dramatic responses along with good and ok responses. While Danny was getting blood drawn last week, I started talking to a woman on the study getting treatment nearby. She was considered terminal by every major cancer in the country and told each and every place there was nothing left to do. She's been receiving treatment at TGen/Scottsdale Healthcare for the past several months and a treatment plan of Gemcitabine was indicated with molecular profiling. It is not indicated by her diagnosis. After two months of Gemzar treatment her tumors have shrunk by 1/3. She told us there are people here from all over the world in the same situation.
We realize this is only one story, but I think it's the story we needed to hear right now. This is the reason why Danny had come here. To find the magic bullet. Doctors have reason to say and believe that a patient is incurable, but maybe they base that opinion without a technological advance like molecular profiling in the equation. It is possible that this could alter the known equation in dramatic and unpredictable fashion.
Now we wait. I believe this is most difficult decision right now. The catch 22 remains that Danny should be treated with chemotherapy NOW. He is healthy enough, there is disease progressing rapidly and he has recently experienced some slight discomfort in his chest, which is under control with a low dose of percocet as needed. But it is agreed by the doctors at TGen and at Sloan and everyone else I've run this by, that if Danny were to be treated with Actinomycin or Vinblastine now, two things would be true.
1. It would yield a low likely hood of showing activity in Danny's disease.
2. It would destroy his blood counts and he would certainly have to wait another 3-4 weeks post treatment to begin another regiment.
Even Dr. Bosl's nurse relayed to us that it would be tragic if we treated Danny now, and then a recommendation was made next week by TGen, but Danny would have wait another several weeks to receive the treatment.
We have Bosl's recommendation on stand-by. We have the ability to treat Danny with it here in Scottsdale if need be. We also are pursing second opinions in terms of radiation oncology at several places around the country and continuing to pursue other clinical trial options. But now, we wait for word from TGen. Danny is holding out for what they have to say. We are all holding out for the magic bullet, a miracle, a factor that was not taken into this equation. We all know we're doing the right thing.
My dad went back to NYC to get our mom and grandfather and doggie. They will all be back in Scottsdale late tonight. We're leaving our apartments in NYC in tact for now because we might wind up back there for Sutent, another trial or for possible radiation treatment. That said, we have hope home in Scottsdale. We could not have imagined in a million years that the greatest hope for Danny was right in our back yard all along.
Danny's doing well. Friends have come over to see him and of course, he's gone out a few times. I'm aware of one gathering with 15 girls and Danny. Danny being the only guy at the party. Need I say more?
To all of you out there, Danny and the rest of this family has hope. We want everyone to know that we believe in getting to Indiana and then coming back home to stay. WE BELIEVE!
Thank you for all your thoughts and prayers. Danny will take every single one of them.
LIVESTRONG
LOVESTRONG
FIGHTSTRONG
Mikey, Danny and the Fam
Apologies for our absence on the forum for this past short while. This past 10 days has been days of very hard, fast choices. On Friday, September 14th Danny had a busy day of follow up scans and appointments following his brain surgery. Everything went very well. The surgery had been a major success. As we were on our way home we got a call from Bosl's office. His HCG had come back and it was way up. Scans showed increased pulmonary mets in size and number, stable and lessening residual nodules in the abdomen and liver. The disease is still confined to his lungs but is progressing. A decision was made that Danny would not receive his second infusion of Gem+Epi. Instead, we were told that we would meet with Dr. Mozter early next week and Danny would start a clinical trial Sutent. We contacted Dr. Einhorn who agreed that Danny should NOT continue GEM+EPI and that Sutent was a very reasonable next step. He had nothing to offer in Indiana except for a trial of Avastin+Oxciliplatin, which would be of no benefit to Danny. He was glad to hear of the brain issue being 'taken care of' and maintained that if some therapy was shown to start to get the disease under control and get his HGG below 1000, HDC would be considered in Indiana.
We waited all weekend and Danny was prepared for Sutent. On Monday, we found out several things.
1. Danny would not be able to begin Sutent for another 2 weeks. Within the study parameters it states a patient must wait 4 weeks post surgery of any kind to begin.
2. I learned from a doctor/friend at Sloan that only a small handful of TC patients have been on the trial and got the basic breakdown of their cases. None had the kind of progressive disease that Danny has at the moment. The results thus far with these patients has been mixed.
So, the choice was: either wait 2 weeks for Sutent, which was highly unlikely or take Bosl's recommendation of treating Danny with older, very seldom used drugs for TC in the meantime. Bosl was recommending, really all that he had left to recommend, which was to go back 30 years before the advent of platinum. He was considering Actinomycin D or Vinblastine.
It was 5pm, we had our choices and none of us liked them. So, we added a third choice. Luckily, Scottsdale is three hours behind. I called TGen, set up an appointment for Danny the next morning for the molecular profiling study, Danny my dad and I packed nothing, jumped in a taxi for the airport and made reservations for the last flight out of NYC on the way to JFK. We did let Sloan know what we were doing before we got on the plane and they didn't object. Dr. Bosl had said several weeks earlier when we asked him about TGen, that "It would be interesting to see the results, but near impossible to get a frozen sample biopsy of Danny's tumor for analysis considering the necrotic nature of his tumors."
We had to take this chance. The next morning we met with the doctors at TGen, the only place in the country where such a study in molecular profiling for solid tumors exists, located about seven minutes from our house. For those our you who don't know, my family is from Scottsdale and they moved out to NYC temporarily for danny to receive treatment at Sloan. TGen already had all of Danny's records and scans which we sent weeks earlier and as they had told us over the phone, Danny met the requirements for the study. All last week was spent doing scans and tests. Danny had a lung biopsy, which was rough on him, and we've been waiting for the results to see if they obtained enough live tissue for the profiling. The waiting has just been excruciating. This morning we found out they got enough. It was a huge hurdle to get past. From this moment until next Monday afternoon, 24/7 testing will be done on Danny's tumor. Fed, you can explain it far better then I, but I think it's safe to say that this is the most extensive cutting edge analysis of tumor possible with today's technology. They will be looking for which genes and proteins are over-expressed in order to recommend a chemotherapy regiment which is directly implicated to kill Danny's cancer cells in order to attack Danny's individual disease; A drug, or regiment that may have never been considered or indicated in treating Germ Cell Cancer.
Thus far, they have told us that among the 45 of 92 already enrolled in the study they have seen some extremely dramatic responses along with good and ok responses. While Danny was getting blood drawn last week, I started talking to a woman on the study getting treatment nearby. She was considered terminal by every major cancer in the country and told each and every place there was nothing left to do. She's been receiving treatment at TGen/Scottsdale Healthcare for the past several months and a treatment plan of Gemcitabine was indicated with molecular profiling. It is not indicated by her diagnosis. After two months of Gemzar treatment her tumors have shrunk by 1/3. She told us there are people here from all over the world in the same situation.
We realize this is only one story, but I think it's the story we needed to hear right now. This is the reason why Danny had come here. To find the magic bullet. Doctors have reason to say and believe that a patient is incurable, but maybe they base that opinion without a technological advance like molecular profiling in the equation. It is possible that this could alter the known equation in dramatic and unpredictable fashion.
Now we wait. I believe this is most difficult decision right now. The catch 22 remains that Danny should be treated with chemotherapy NOW. He is healthy enough, there is disease progressing rapidly and he has recently experienced some slight discomfort in his chest, which is under control with a low dose of percocet as needed. But it is agreed by the doctors at TGen and at Sloan and everyone else I've run this by, that if Danny were to be treated with Actinomycin or Vinblastine now, two things would be true.
1. It would yield a low likely hood of showing activity in Danny's disease.
2. It would destroy his blood counts and he would certainly have to wait another 3-4 weeks post treatment to begin another regiment.
Even Dr. Bosl's nurse relayed to us that it would be tragic if we treated Danny now, and then a recommendation was made next week by TGen, but Danny would have wait another several weeks to receive the treatment.
We have Bosl's recommendation on stand-by. We have the ability to treat Danny with it here in Scottsdale if need be. We also are pursing second opinions in terms of radiation oncology at several places around the country and continuing to pursue other clinical trial options. But now, we wait for word from TGen. Danny is holding out for what they have to say. We are all holding out for the magic bullet, a miracle, a factor that was not taken into this equation. We all know we're doing the right thing.
My dad went back to NYC to get our mom and grandfather and doggie. They will all be back in Scottsdale late tonight. We're leaving our apartments in NYC in tact for now because we might wind up back there for Sutent, another trial or for possible radiation treatment. That said, we have hope home in Scottsdale. We could not have imagined in a million years that the greatest hope for Danny was right in our back yard all along.
Danny's doing well. Friends have come over to see him and of course, he's gone out a few times. I'm aware of one gathering with 15 girls and Danny. Danny being the only guy at the party. Need I say more?
To all of you out there, Danny and the rest of this family has hope. We want everyone to know that we believe in getting to Indiana and then coming back home to stay. WE BELIEVE!
Thank you for all your thoughts and prayers. Danny will take every single one of them.
LIVESTRONG
LOVESTRONG
FIGHTSTRONG
Mikey, Danny and the Fam
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