live from Bad Berka, it's PRRT!
My 68-ga Scans: the full disk is amazing... note the bottom row. See that the large tumor is not illuminated. More to follow.UPDATED (Q/A with Dr. Baum via Email - at end of post) 02/10.2010:
Disclaimer: Trying to get to Berlin, so please excuse the typos:
Yesterday I had my visit with Dr. Baum and the (68ga PET/CT scan) here in Germany. The results were interesting!
After over a year of searching in the US, the primary tumor was found here in Germany in the tail of the pancreas. It is very small, around 1CM in dia. Also, Dr. Baum believes that the largest tumor in the dome of my liver (6.5CM) is actually 90% benign with a metastasis (NET / cancer) growing in the center and edge. This is very rare and Baum has only seen it one other patient in over 4200 cases. We will do more tests (FDG PET Scan) to confirm next week, but it makes a lot of sense. This conclusion was made by how that tumor reads on the scan. It has to do with receptor uptake, etc. Others could probably explain it better. (–I’ll work on an update for this.) Dr. Botha, as well as other Doctors, had noted that the large tumor was very suspicious for FNH, but they all assumed it was 100% malignant because the biopsy portion was from the center... turns out, it might be both NET and FNH? Strange indeed. The liver still looks pretty bad with respect to Mets throughout though...which does not make a potential surgery any easier. We have contacted Dr. Botha and he has suggested that we proceed with the PRRT and skip surgery for now. If there is a regression of tumor burden with PRRT, we can reinvestigate surgical options at a later date if needed. We will also have to see what happens with the large tumor. We’ll need to confirm that it is in fact a FNH/NET hybrid, and from there, figure out what to do since it may continue to cause pain.
No tumors were found in the bones or lymph nodes, etc. This is very good news meaning the cancer (that we can see) not on the super micro (cellular) level is confined to the pancreas and liver.
So, we have extended our trip and I will be admitted to the hospital here on Sunday the 14th. The plan would be to do the PRRT treatment and return home after a week. Then, monitor via MRI, and restage in 4-6 months (which means returning to Germany). I will also stop taking my Sando shots, which are probably a huge waste. Since my disease has been stable over the last 14 months, we can try the PRRT, test the results, and see what happens. If we are stable, or better, see the tumors regress, we will continue to monitor. If there is a partial response, maybe we can look at surgery with less tumor burden after PRRT? (TBD). If there are no results via PRRT, we move toward another option. The PRRT would also attack the primary, if successful. I will also continue to investigate the possibility of removing the primary manually (i.e. surgery) when I return to the US. -This would probably done at the same time as another surery, if indicated.
PRRT is not a magic bullet. It may not work, but MANY patients have had amazing results. It has a lot to do with your uptake, but mine is only fair (I believe my highsest SUV is near 15?), but there is still hope it might help. It kind of works like this: Simply Put: these tumors have receptors, the stuff they treat you with sticks to these receptors and kills the cancer cells. Your liver then naturally eats that dead tissue (Kupffer cells) and the tumors go away ( I think Ii have this right). So, if it works, you are left with a (somwhat) normal liver. This is a systemic treatment. So, imagine that all the tumors in my body, no matter what the size, are magnets. If I’m injected with metal shavings, they go right to the magnets. But of course, the stronger strength the magnet the better it works.
I’ll elaborate on this more as I learn… for now, this is where we’re at.
Check out Steve’s blog http://www.renalcarcinoid.com/ Steve has had great reesults with PRRT! He also post very useful information for visitors traveling to the clinic in Bad Berka.
And…so, Rob, we might get a chance to do that show after all!
Yesterday I had my visit with Dr. Baum and the (68ga PET/CT scan) here in Germany. The results were interesting!
After over a year of searching in the US, the primary tumor was found here in Germany in the tail of the pancreas. It is very small, around 1CM in dia. Also, Dr. Baum believes that the largest tumor in the dome of my liver (6.5CM) is actually 90% benign with a metastasis (NET / cancer) growing in the center and edge. This is very rare and Baum has only seen it one other patient in over 4200 cases. We will do more tests (FDG PET Scan) to confirm next week, but it makes a lot of sense. This conclusion was made by how that tumor reads on the scan. It has to do with receptor uptake, etc. Others could probably explain it better. (–I’ll work on an update for this.) Dr. Botha, as well as other Doctors, had noted that the large tumor was very suspicious for FNH, but they all assumed it was 100% malignant because the biopsy portion was from the center... turns out, it might be both NET and FNH? Strange indeed. The liver still looks pretty bad with respect to Mets throughout though...which does not make a potential surgery any easier. We have contacted Dr. Botha and he has suggested that we proceed with the PRRT and skip surgery for now. If there is a regression of tumor burden with PRRT, we can reinvestigate surgical options at a later date if needed. We will also have to see what happens with the large tumor. We’ll need to confirm that it is in fact a FNH/NET hybrid, and from there, figure out what to do since it may continue to cause pain.
No tumors were found in the bones or lymph nodes, etc. This is very good news meaning the cancer (that we can see) not on the super micro (cellular) level is confined to the pancreas and liver.
So, we have extended our trip and I will be admitted to the hospital here on Sunday the 14th. The plan would be to do the PRRT treatment and return home after a week. Then, monitor via MRI, and restage in 4-6 months (which means returning to Germany). I will also stop taking my Sando shots, which are probably a huge waste. Since my disease has been stable over the last 14 months, we can try the PRRT, test the results, and see what happens. If we are stable, or better, see the tumors regress, we will continue to monitor. If there is a partial response, maybe we can look at surgery with less tumor burden after PRRT? (TBD). If there are no results via PRRT, we move toward another option. The PRRT would also attack the primary, if successful. I will also continue to investigate the possibility of removing the primary manually (i.e. surgery) when I return to the US. -This would probably done at the same time as another surery, if indicated.
PRRT is not a magic bullet. It may not work, but MANY patients have had amazing results. It has a lot to do with your uptake, but mine is only fair (I believe my highsest SUV is near 15?), but there is still hope it might help. It kind of works like this: Simply Put: these tumors have receptors, the stuff they treat you with sticks to these receptors and kills the cancer cells. Your liver then naturally eats that dead tissue (Kupffer cells) and the tumors go away ( I think Ii have this right). So, if it works, you are left with a (somwhat) normal liver. This is a systemic treatment. So, imagine that all the tumors in my body, no matter what the size, are magnets. If I’m injected with metal shavings, they go right to the magnets. But of course, the stronger strength the magnet the better it works.
I’ll elaborate on this more as I learn… for now, this is where we’re at.
Check out Steve’s blog http://www.renalcarcinoid.com/ Steve has had great reesults with PRRT! He also post very useful information for visitors traveling to the clinic in Bad Berka.
And…so, Rob, we might get a chance to do that show after all!
UPDATE (Q/A with Dr. Baum via Email) 02/10.2010:
1. (Q): Are you recommending Lu177 or Y90? What is the difference and/or benefit of either in my case? I was under the impression that Y90 was stronger?
(A): I will do Lu-177 first as it works better on micromets (I will explain to you again when you are here) and is more kidney and bone marrow friendly.
2: (Q): Should we be considering manually (surgically) removing the primary, even after PRRT? I know some doctors feel strongly about removing it. However, it seems as though PRRT, if it works, will take care of this lesion.
1. (Q): Are you recommending Lu177 or Y90? What is the difference and/or benefit of either in my case? I was under the impression that Y90 was stronger?
(A): I will do Lu-177 first as it works better on micromets (I will explain to you again when you are here) and is more kidney and bone marrow friendly.
2: (Q): Should we be considering manually (surgically) removing the primary, even after PRRT? I know some doctors feel strongly about removing it. However, it seems as though PRRT, if it works, will take care of this lesion.
(A): Currently there is no need to operate on the primary (maybe later together with liver surgery).
3. (Q): Is it possible that the large tumor, the parts that are not NET and possibly FNH, might actually be another form of Cancer? The FDG scan should help rule this out, yes? (Also note - no other tumor markers from other Cancers were found).
(A): Another form of cancer is very unlikely.
4. (Q): What do we do with that large tumor after PRRT? It does cause pain and I assume PRRT will have little or no result on the mass that is possibly FNH.
(A): You are right that is why I was suggesting to contact Dr Botha after PRRT and ask him to resect the large lesion (maybe together with the primary)
5. (Q): What is the median uptake value of most patients. I believe you noted I was around 15? Therefore, from your experience, what might response be? I recognize that all cases are different.
(A): You are within the middle to lower range we found in most patients. I expect a good response.
Anthony,
ReplyDeleteYou and Andrea are an inspiration to all carcinoid patients. I am thrilled they found your primary. Hell of a way to spend Valentine's Day, but I am betting that Andrea could not ask for a better present than to know you are making progress. My thoughts and prayers will be that you have GREAT uptake and tumor reduction!
that sounds very positive! i have my fingers crossed for you anthony. -andy
ReplyDeleteAnthony, that's great news. Are you able to drink any good German beer while you are there? Also, Germany has a great carnival season. Will you be able to get out? Cologne especially has a great big party next week.
ReplyDeleteIncredible perserverence. It's really taking things a step at a time. You both are still in all of our thoughts.
ReplyDeleteAnthony,
ReplyDeleteYou are exactly where you need to be. You are getting a special Valentines Day. Hope! I am there is spirit for you and Andrea. Thoughts and Prayers beaming your way.
Alicia
Anthony, a pleasure speaking with you today. Congratulations on the great result and thank you for your offer to help educate others about this treatment option.
ReplyDeleteBest wishes, Lauren Erb
Hi Anthony,
ReplyDeleteAny advice for someone trying to choose between Bad Burka and Uppsala or other centers in Europe? Also, how are things after your treatment?
Ayal (ayalmar@gmail.com)