Tweet
Hi Forum Family,
I thought we'd put the 'unexpected surgery' thread to rest. Been there, done that, moving on, thank you come again...
Today, we had the great pleasure of meeting with Dr. Bosl. At this point, Danny and I are just so darn happy when we get to see him that our nipples simultaneously harden with glee when he walks in the room. I can't speak for my parent's outward signs of excitement because they generally wear thicker shirts then us, but I'm sure they become equally aroused at sight and sounds of the fine doctor.
Looks like a nasty fight with Bosl over Danny's treatment timing that I had thoroughly prepared for will not be necessary. Bosl is taking the neurosurgeon's advice for treatment to begin 2 weeks post surgery. So he'll start GEM-EPI again one week from today as long as his platelets are close to 100. I admit, I was surprised. I think quite frankly, that Bosl was surprised to see Danny practically 'bouncing off the walls' healthy and energetic.
Several things were discussed.
1. Bosl says it's too soon to pass judgement on the efficacy of GEM-EPI although with some pressing I was able to SQUEEZE out of him that the initial response left him hopeful.
2. We wanted to discuss the possibility under certain circumstances that Radiofrequency Ablation on the existing lung tumors be considered. Although this is a local therapy that only destroys the tumor itself and does nothing to treat the disease systemically, we wanted it to be an option on the table in case we wanted to act on it at some point. He poo-pooed it for reasons that I think a case can certainly be made against, but agreed that he'd refer us to an interventional radiologist (who he said would concur with him) if we really wanted to pursue it. We'll see on that one...
3. We wanted to once and for all find out Bosl's final stance on the question of HDC. I laid out the precise hypothetical criteria that 'a doctor in the midwest' communicated to us as necessary to happen for him to seriously consider the administering of HDC with the intent of cure. Bosl said that given these circumstances or any other he would absolutely not consider HDC. It was then that swiftly kicked him in the groin and pinched his checks as he doubled over.
Just kidding.
4. Finally we discussed with him something totally different that I don't think I've mentioned here before. Over the past month, I've done quite a bit of research on a company called TGen and some of the very novel work they are doing to fight refractory tumors. TGen is quickly becoming a major player in the molecular biology research industry. We've been intouch with the patient coordinator and sent Danny's records to their headquarters in Phoenix (of all places). Several days ago, I got an email back saying that danny would be a candidate for what they have to offer and today I spoke with a nurse at TGen confirming that the doctors have reviewed his case and approved him for the study.
This program is about as cutting edge as it gets. It involves the molecular profiling of dannys active cancer cell mutation and doing an array of the cancerous cells to predict and determine what chemotherapy drugs/ immunotherapy/inhibitors his individualized tumor make-up might be sensitive to. I was turned on the idea by Fed a long while back who had heard of this sort of thing being experimented with. From what I know, often times in patients who have been involved with this, a cocktail that NEVER would have been considered due to the type of cancer was attempted as a result of molecular profiling and showed great success. This type of individualized care could very well be the future of cancer care.
For those interested in this you can watch a recent report on CBS News here:
The company itself can be looked at on:
&
The specific study that is a possibility for Danny to become involved in can be looked at here:
Of course it is first and foremost in our hearts and minds that Danny continues to respond in a most spectacular way to GemEpi. DON'T UNDERESTIMATE THE POWER OF GEM-EPI!!! We pray that Danny not need to ever be apart of this 'cutting edge' approach, but we are keeping it on the table as another option and I wanted to share it with you all.
By the way, Bosl's response to all of this was that it would be very difficult to obtain the biopsy TGen would need for the profiling.
He is swell.
With that, Danny's appointment ended and we took turns giving Bosl great big warm bear hugs on the way out the door. Danny touched him inappropriately on the buttocks and Bosl giggled like a little school girl.
Danny has an MRI tomorrow morning and appointments with his surgeon and*neurologist in the afternoon. The staples are coming out! YES!
Anyway, that's the story. You know, today was actually a very special and important day. For us, it marks the beginning of the New Year. I believe that this is the year of hope. This is Danny's year.
My whole family sends love to all of you!!!
G'night,
Mikey
I thought we'd put the 'unexpected surgery' thread to rest. Been there, done that, moving on, thank you come again...
Today, we had the great pleasure of meeting with Dr. Bosl. At this point, Danny and I are just so darn happy when we get to see him that our nipples simultaneously harden with glee when he walks in the room. I can't speak for my parent's outward signs of excitement because they generally wear thicker shirts then us, but I'm sure they become equally aroused at sight and sounds of the fine doctor.
Looks like a nasty fight with Bosl over Danny's treatment timing that I had thoroughly prepared for will not be necessary. Bosl is taking the neurosurgeon's advice for treatment to begin 2 weeks post surgery. So he'll start GEM-EPI again one week from today as long as his platelets are close to 100. I admit, I was surprised. I think quite frankly, that Bosl was surprised to see Danny practically 'bouncing off the walls' healthy and energetic.
Several things were discussed.
1. Bosl says it's too soon to pass judgement on the efficacy of GEM-EPI although with some pressing I was able to SQUEEZE out of him that the initial response left him hopeful.
2. We wanted to discuss the possibility under certain circumstances that Radiofrequency Ablation on the existing lung tumors be considered. Although this is a local therapy that only destroys the tumor itself and does nothing to treat the disease systemically, we wanted it to be an option on the table in case we wanted to act on it at some point. He poo-pooed it for reasons that I think a case can certainly be made against, but agreed that he'd refer us to an interventional radiologist (who he said would concur with him) if we really wanted to pursue it. We'll see on that one...
3. We wanted to once and for all find out Bosl's final stance on the question of HDC. I laid out the precise hypothetical criteria that 'a doctor in the midwest' communicated to us as necessary to happen for him to seriously consider the administering of HDC with the intent of cure. Bosl said that given these circumstances or any other he would absolutely not consider HDC. It was then that swiftly kicked him in the groin and pinched his checks as he doubled over.
Just kidding.
4. Finally we discussed with him something totally different that I don't think I've mentioned here before. Over the past month, I've done quite a bit of research on a company called TGen and some of the very novel work they are doing to fight refractory tumors. TGen is quickly becoming a major player in the molecular biology research industry. We've been intouch with the patient coordinator and sent Danny's records to their headquarters in Phoenix (of all places). Several days ago, I got an email back saying that danny would be a candidate for what they have to offer and today I spoke with a nurse at TGen confirming that the doctors have reviewed his case and approved him for the study.
This program is about as cutting edge as it gets. It involves the molecular profiling of dannys active cancer cell mutation and doing an array of the cancerous cells to predict and determine what chemotherapy drugs/ immunotherapy/inhibitors his individualized tumor make-up might be sensitive to. I was turned on the idea by Fed a long while back who had heard of this sort of thing being experimented with. From what I know, often times in patients who have been involved with this, a cocktail that NEVER would have been considered due to the type of cancer was attempted as a result of molecular profiling and showed great success. This type of individualized care could very well be the future of cancer care.
For those interested in this you can watch a recent report on CBS News here:
The company itself can be looked at on:
&
The specific study that is a possibility for Danny to become involved in can be looked at here:
Of course it is first and foremost in our hearts and minds that Danny continues to respond in a most spectacular way to GemEpi. DON'T UNDERESTIMATE THE POWER OF GEM-EPI!!! We pray that Danny not need to ever be apart of this 'cutting edge' approach, but we are keeping it on the table as another option and I wanted to share it with you all.
By the way, Bosl's response to all of this was that it would be very difficult to obtain the biopsy TGen would need for the profiling.
He is swell.
With that, Danny's appointment ended and we took turns giving Bosl great big warm bear hugs on the way out the door. Danny touched him inappropriately on the buttocks and Bosl giggled like a little school girl.
Danny has an MRI tomorrow morning and appointments with his surgeon and*neurologist in the afternoon. The staples are coming out! YES!
Anyway, that's the story. You know, today was actually a very special and important day. For us, it marks the beginning of the New Year. I believe that this is the year of hope. This is Danny's year.
My whole family sends love to all of you!!!
G'night,
Mikey
Comment