It is so encouraging to hear that your maintenance chemo is working. Keep on battling ... Best wishes for your next scan in march. Let's hope for even more progress on beating the beast....or better yet NED.
Sounds like it was a positive appointment. I would recommend you not stop. Talk to some other hospitals. There are so many different ways to target the liver directly. I would try to get a consultation with Dr. Patty at Sloan. (Not sure if that is her real name or just a nickname. Seems very well liked by her patients). Phil has done really well with his HAI pump. I wonder if you could benefit from this same type of treatment? I believe Sloan is the only hospital using this pump. They have had a lot of success with it. You are likely tempted to stop looking for more opinions. I know what a physically and emotionally draining process it can be. Thanks for the update. Good luck. Don't settle for anything other than the most top notch treatment that is available to you.
So happy to hear your plan is working for you and continue to get better! It would be nice if you could get into Sloan ... maybe that could happen for you as well. It does sound as though they have the most advanced procedures/treatments.
Best to you for continued success and hope you are feeling well during your remaining treatments.
So glad to hear your cancer is stable and the treatment is working but you've done so well, it seems like going for broke with a plan to truly eradicate those liver tumors would be a good thing! I would seek another opinion, specifically asking for doctors who do liver targeted therapies. My daughter had Theraspheres. Maybe you could contact Suzanne Lindley of www.beatlivertumors.org and see what she suggests. Best wishes to you and glad you're doing well and looking to "kick it up a notch."
No progress and shrinkage is good, and glad you got another opinion, but hey, it doesn't hurt to go for a couple of more. I went through two tumor boards and finally an onc that had connections with surgeons that my regular onc sent me to, and I got my surgeries, and longer life span so far.
But the news is still good my man, I'm glad for you!
You may want to talk with Phillg as others have suggested. He's done well with the HAI pump from Sloan. From what I understand, some Drs. don't utilize that tx, so you may wnat to talk with Phil for his input.
I'm right with you Joe (well, not exactly but close). First 6 months of chemo (FOLFOX + Avastin) resulted in shrinkage of tumors, but not as dramatic as your results. However, I am definitely stable or still improving, so they are trying a maintenance chemo of just 5FU + Avastin. I have taken 2 tx of that regimen, and will take 2 more and then get more CT scans to see how it is working. When needed *tunors no longer stable), I will start FOLFIRI + Avastin as my second round of aggresive chemo, OR I may look into other options (dendritic cell vaccine and other options available in Germany). A lot will depend on how Pete continues to do, and whether I can get my life insurance to pay out early. Keep up the fight, and continued prayers for your well being....
sounds pretty good to me! Seems like there is a distinct chance for things to get to the point for surgery, if the tumors can knocked back to virtually nothing, and it sounds like that might still be a possibility. You don't seem like the kind of guy to take no for an answer, so I have a feeling that you've got a good chance of getting even better news in the future! Hugs~AA
I did get a call back today from the doc and he spoke with a couple other docs and they want me to come back soon... and want to discuss Radio embolization and Y90
I guess I might be a good canidate for this treatment.
a close friend had sirt spheres, one got loose and lodged in her stomach burnt a whole in it.
she suffered a bit, all procedures can have complications. another friend had chemo embolisation with vogel on same day as me and suffered agony for 2 weeks as
somehow the artery lining was damaged. she is ok now.
Joined: Jul 2012
It is so encouraging to hear
It is so encouraging to hear that your maintenance chemo is working. Keep on battling ... Best wishes for your next scan in march. Let's hope for even more progress on beating the beast....or better yet NED.
Alex
Joined: Sep 2012
Hi Joe, Sounds like it was a
Hi Joe,
Sounds like it was a positive appointment. I would recommend you not stop. Talk to some other hospitals. There are so many different ways to target the liver directly. I would try to get a consultation with Dr. Patty at Sloan. (Not sure if that is her real name or just a nickname. Seems very well liked by her patients). Phil has done really well with his HAI pump. I wonder if you could benefit from this same type of treatment? I believe Sloan is the only hospital using this pump. They have had a lot of success with it. You are likely tempted to stop looking for more opinions. I know what a physically and emotionally draining process it can be. Thanks for the update. Good luck. Don't settle for anything other than the most top notch treatment that is available to you.
Chelsea
Joined: Apr 2012
joemetz
Good news is always welcome at this forum'!!!
Joined: Sep 2011
So glad
It is good to hear some good news. Stay well and pray for more good news. Jeff
Joined: Jun 2006
Joe
oh Joe that is such good news. i am glad you liked your young doctor. Keep up the great work...something really wonderful is bound to show up...
all the best, maggie
Joined: Sep 2012
So happy to hear your plan is
So happy to hear your plan is working for you and continue to get better! It would be nice if you could get into Sloan ... maybe that could happen for you as well. It does sound as though they have the most advanced procedures/treatments.
Best to you for continued success and hope you are feeling well during your remaining treatments.
Joined: Feb 2012
I would get another opinion...
So glad to hear your cancer is stable and the treatment is working but you've done so well, it seems like going for broke with a plan to truly eradicate those liver tumors would be a good thing! I would seek another opinion, specifically asking for doctors who do liver targeted therapies. My daughter had Theraspheres. Maybe you could contact Suzanne Lindley of www.beatlivertumors.org and see what she suggests. Best wishes to you and glad you're doing well and looking to "kick it up a notch."
Sandy
P.S. Here is a link for some contacts in Ohio re: Theraspheres: http://www.nordion.com/therasphere/treatmentcenters_us/us.asp
Joined: Apr 2010
Joe
Hey Joe,
No progress and shrinkage is good, and glad you got another opinion, but hey, it doesn't hurt to go for a couple of more. I went through two tumor boards and finally an onc that had connections with surgeons that my regular onc sent me to, and I got my surgeries, and longer life span so far.
But the news is still good my man, I'm glad for you!
Winter Marie
Joined: Aug 2011
Hi Joe
You may want to talk with Phillg as others have suggested. He's done well with the HAI pump from Sloan. From what I understand, some Drs. don't utilize that tx, so you may wnat to talk with Phil for his input.
God Bless,
Tommycat
Joined: Jun 2012
I'm right with you Joe (well,
I'm right with you Joe (well, not exactly but close). First 6 months of chemo (FOLFOX + Avastin) resulted in shrinkage of tumors, but not as dramatic as your results. However, I am definitely stable or still improving, so they are trying a maintenance chemo of just 5FU + Avastin. I have taken 2 tx of that regimen, and will take 2 more and then get more CT scans to see how it is working. When needed *tunors no longer stable), I will start FOLFIRI + Avastin as my second round of aggresive chemo, OR I may look into other options (dendritic cell vaccine and other options available in Germany). A lot will depend on how Pete continues to do, and whether I can get my life insurance to pay out early. Keep up the fight, and continued prayers for your well being....
Tedd
Joined: Feb 2011
Great news .... love your
Great news .... love your blog!!! Continued success with which ever route you decide on, these decisions are so complicated and hard to make.
Joined: Apr 2012
Congratulations!
On the excellent response to the chemo! I'm hoping for similar news in a few months.
Also, excellent blog!
Thanks,
Phil
Joined: Oct 2011
Popped over there and read it, Joe...
sounds pretty good to me! Seems like there is a distinct chance for things to get to the point for surgery, if the tumors can knocked back to virtually nothing, and it sounds like that might still be a possibility. You don't seem like the kind of guy to take no for an answer, so I have a feeling that you've got a good chance of getting even better news in the future! Hugs~AA
Joined: Nov 2011
thanks eveyone
thanks everyone for your feedback.
I did get a call back today from the doc and he spoke with a couple other docs and they want me to come back soon... and want to discuss Radio embolization and Y90
I guess I might be a good canidate for this treatment.
http://www.radiologyinfo.org/en/info.cfm?pg=radioembol
anyone had experience with this?
Joe
Joined: Nov 2010
great news joe
a close friend had sirt spheres, one got loose and lodged in her stomach burnt a whole in it.
she suffered a bit, all procedures can have complications. another friend had chemo embolisation with vogel on same day as me and suffered agony for 2 weeks as
somehow the artery lining was damaged. she is ok now.
hugs,
pete