Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Hi,I don't really know where to start so I guess I'll just say that I was diagnosed with PSC 4 years ago just after we found out that my wife was pregnant with our son. Talk about running the gamut of emotions in a very short period of time. This all came about 7 years after having a total collectomy after a 10 year bout with UC which was only controlled by prednisone.My PSC had been annoying up until now, but it was just something I worried very little about other than going in for ERCPs, MRCPs and other batteries of tests including CA19-9. Well, all that changed this week. I got call from my GI that my CA19-9s were at 274 (128 at last test 6 months or so ago) and that one end of my Mayo FISH test came back as positive (bad). I guess it's in the right hepatic duct and is in a place that is considered fixable in that they are planning on putting me on the Mayo Protocol for chemo/radiology for 6 weeks and then an exploratory surgery to make sure all the potentially malignant cells are gone before putting me at a 20 and putting me on the transplant list. Hopefully I'd be looking at a transplant in 3 to 6 months after going on the list.I met with the transplant people yesterday and before they heard about the positive result they marked me as a 14 on the MELD score chart and were just planning on keeping me under observation every 3 months until my score went higher. Once they saw that part of my chart they now want me to do an MRCP and chest CT scan this coming Monday to make sure I don't have any tumors larger than 2 CM otherwise I guess I won't be a candidate for the Mayo Protocol.My last test before the ERCP two weeks ago was back in May of last year when I had an MRCP. I believe that my results from that came back normal or as normal as they can be for a PSC patient. That's why my doc gave me a longer break until my ERCP in January. I'm just worried that now he might have waited too long.Has anyone out there been in a similar situation or is anyone else looking at the Mayo Protocol? It's a strange and scary place to be at where I am hoping for chemo/radiation in the next few weeks but that will mean that I've been approved for the protocol. I'm just a nervous 34 year old dad with a two year old at home.Thanks for listening and if anyone has any insight please feel free to share.-leo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Hey Leo: The weekends are slow and someone with experience with your situation will get to you very soon. Be advised you came to a wonderful place with people from all walks of life and all over the world. I am the caregiver to husband of 40+ years and he had a ileostomy in the 60's and psc 1999 and is still trucking along. I do know that you can go to the home page and search the archives until someone gets to you. We have so many saying here but here are a few that will helpfor the time being: Welcome, we're glad you found us but sorry for the dx. Together in the fight, whatever it takes. Dee wife of Bob, ileo, psc, osteopenia, Miniers Disease Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Hey Leo: The weekends are slow and someone with experience with your situation will get to you very soon. Be advised you came to a wonderful place with people from all walks of life and all over the world. I am the caregiver to husband of 40+ years and he had a ileostomy in the 60's and psc 1999 and is still trucking along. I do know that you can go to the home page and search the archives until someone gets to you. We have so many saying here but here are a few that will helpfor the time being: Welcome, we're glad you found us but sorry for the dx. Together in the fight, whatever it takes. Dee wife of Bob, ileo, psc, osteopenia, Miniers Disease Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Leo, Welcome to the group, As Deanna says we do have members that have successfully fought the cancer and have continued on to a successful transplant and we have members that are currently fighting the battle (chemo/radiology).and I am sure you will hear from them in the next few days. You are not alone. We offer you emotional support and will will pray for you! Ian (52) PSC 89 Hi,I don't really know where to start so I guess I'll just say that I was diagnosed with PSC 4 years ago just after we found out that my wife was pregnant with our son. Talk about running the gamut of emotions in a very short period of time. This all came about 7 years after having a total collectomy after a 10 year bout with UC which was only controlled by prednisone. My PSC had been annoying up until now, but it was just something I worried very little about other than going in for ERCPs, MRCPs and other batteries of tests including CA19-9. Well, all that changed this week. I got call from my GI that my CA19-9s were at 274 (128 at last test 6 months or so ago) and that one end of my Mayo FISH test came back as positive (bad). I guess it's in the right hepatic duct and is in a place that is considered fixable in that they are planning on putting me on the Mayo Protocol for chemo/radiology for 6 weeks and then an exploratory surgery to make sure all the potentially malignant cells are gone before putting me at a 20 and putting me on the transplant list. Hopefully I'd be looking at a transplant in 3 to 6 months after going on the list. I met with the transplant people yesterday and before they heard about the positive result they marked me as a 14 on the MELD score chart and were just planning on keeping me under observation every 3 months until my score went higher. Once they saw that part of my chart they now want me to do an MRCP and chest CT scan this coming Monday to make sure I don't have any tumors larger than 2 CM otherwise I guess I won't be a candidate for the Mayo Protocol. My last test before the ERCP two weeks ago was back in May of last year when I had an MRCP. I believe that my results from that came back normal or as normal as they can be for a PSC patient. That's why my doc gave me a longer break until my ERCP in January. I'm just worried that now he might have waited too long. Has anyone out there been in a similar situation or is anyone else looking at the Mayo Protocol? It's a strange and scary place to be at where I am hoping for chemo/radiation in the next few weeks but that will mean that I've been approved for the protocol. I'm just a nervous 34 year old dad with a two year old at home. Thanks for listening and if anyone has any insight please feel free to share.-leo -- Ian Cribb P.Eng. (6... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Leo.. I 2nd what lee says....do what she says....I'm new to this group (just 2 months) but without doubt, I don't think I would have been this far along with my knowledge, support and new Doctors had it not been for PSC- Support.....people like wells and Sandi Pearlman and Tim and Youtube are all there in there different way...I'm sure you'll find many many more and you'll be back on (on the PSC roller-coaster ride) track that Tim so eloquently described to me today....Hang on buddy....You'll find a answer soon! Peace and prayers Don PSC-UC-11-08! To: Sent: Saturday, February 7, 2009 12:42:31 PMSubject: New here and need some advice and calming words... Hi,I don't really know where to start so I guess I'll just say that I was diagnosed with PSC 4 years ago just after we found out that my wife was pregnant with our son. Talk about running the gamut of emotions in a very short period of time. This all came about 7 years after having a total collectomy after a 10 year bout with UC which was only controlled by prednisone.My PSC had been annoying up until now, but it was just something I worried very little about other than going in for ERCPs, MRCPs and other batteries of tests including CA19-9. Well, all that changed this week. I got call from my GI that my CA19-9s were at 274 (128 at last test 6 months or so ago) and that one end of my Mayo FISH test came back as positive (bad). I guess it's in the right hepatic duct and is in a place that is considered fixable in that they are planning on putting me on the Mayo Protocol for chemo/radiology for 6 weeks and then an exploratory surgery to make sure all the potentially malignant cells are gone before putting me at a 20 and putting me on the transplant list. Hopefully I'd be looking at a transplant in 3 to 6 months after going on the list.I met with the transplant people yesterday and before they heard about the positive result they marked me as a 14 on the MELD score chart and were just planning on keeping me under observation every 3 months until my score went higher. Once they saw that part of my chart they now want me to do an MRCP and chest CT scan this coming Monday to make sure I don't have any tumors larger than 2 CM otherwise I guess I won't be a candidate for the Mayo Protocol.My last test before the ERCP two weeks ago was back in May of last year when I had an MRCP. I believe that my results from that came back normal or as normal as they can be for a PSC patient. That's why my doc gave me a longer break until my ERCP in January. I'm just worried that now he might have waited too long.Has anyone out there been in a similar situation or is anyone else looking at the Mayo Protocol? It's a strange and scary place to be at where I am hoping for chemo/radiation in the next few weeks but that will mean that I've been approved for the protocol. I'm just a nervous 34 year old dad with a two year old at home.Thanks for listening and if anyone has any insight please feel free to share.-leo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Leo.. I 2nd what lee says....do what she says....I'm new to this group (just 2 months) but without doubt, I don't think I would have been this far along with my knowledge, support and new Doctors had it not been for PSC- Support.....people like wells and Sandi Pearlman and Tim and Youtube are all there in there different way...I'm sure you'll find many many more and you'll be back on (on the PSC roller-coaster ride) track that Tim so eloquently described to me today....Hang on buddy....You'll find a answer soon! Peace and prayers Don PSC-UC-11-08! To: Sent: Saturday, February 7, 2009 12:42:31 PMSubject: New here and need some advice and calming words... Hi,I don't really know where to start so I guess I'll just say that I was diagnosed with PSC 4 years ago just after we found out that my wife was pregnant with our son. Talk about running the gamut of emotions in a very short period of time. This all came about 7 years after having a total collectomy after a 10 year bout with UC which was only controlled by prednisone.My PSC had been annoying up until now, but it was just something I worried very little about other than going in for ERCPs, MRCPs and other batteries of tests including CA19-9. Well, all that changed this week. I got call from my GI that my CA19-9s were at 274 (128 at last test 6 months or so ago) and that one end of my Mayo FISH test came back as positive (bad). I guess it's in the right hepatic duct and is in a place that is considered fixable in that they are planning on putting me on the Mayo Protocol for chemo/radiology for 6 weeks and then an exploratory surgery to make sure all the potentially malignant cells are gone before putting me at a 20 and putting me on the transplant list. Hopefully I'd be looking at a transplant in 3 to 6 months after going on the list.I met with the transplant people yesterday and before they heard about the positive result they marked me as a 14 on the MELD score chart and were just planning on keeping me under observation every 3 months until my score went higher. Once they saw that part of my chart they now want me to do an MRCP and chest CT scan this coming Monday to make sure I don't have any tumors larger than 2 CM otherwise I guess I won't be a candidate for the Mayo Protocol.My last test before the ERCP two weeks ago was back in May of last year when I had an MRCP. I believe that my results from that came back normal or as normal as they can be for a PSC patient. That's why my doc gave me a longer break until my ERCP in January. I'm just worried that now he might have waited too long.Has anyone out there been in a similar situation or is anyone else looking at the Mayo Protocol? It's a strange and scary place to be at where I am hoping for chemo/radiation in the next few weeks but that will mean that I've been approved for the protocol. I'm just a nervous 34 year old dad with a two year old at home.Thanks for listening and if anyone has any insight please feel free to share.-leo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Leo, I am listed and my transplant doc has me do ultrasounds every 6 mo. and MRCP yearly (unless the ultrsound shows any changes, like it did this past time) I get labs done every 3 months unless there is a change in how I am feeling. So if your labs and how you have been feeling, ect. have been normal for you, I don't think you/your doctor waited to long between ERCP's. There are different opinions on doing routine ERCP's. Some for it some against them because of the risk that go with the procedure. Sounds like you and your doc have done everthing that can be done. This disease is just so unpredictable and different for each person. You and yours are in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Leo, I am listed and my transplant doc has me do ultrasounds every 6 mo. and MRCP yearly (unless the ultrsound shows any changes, like it did this past time) I get labs done every 3 months unless there is a change in how I am feeling. So if your labs and how you have been feeling, ect. have been normal for you, I don't think you/your doctor waited to long between ERCP's. There are different opinions on doing routine ERCP's. Some for it some against them because of the risk that go with the procedure. Sounds like you and your doc have done everthing that can be done. This disease is just so unpredictable and different for each person. You and yours are in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Leo, Hi! I'm so sorry for all you're going through. This PSC thing sure makes life fun, huh? I can't speak to the Mayo Protocol for chemo/radiology but I'm sure somebody will get back to you on that soon. I just wanted to welcome you to the group and let you know that we're always here to listen, so feel free to write in anytime. We'll be there for you! In regard to your ERCP, I would guess that your doctor did what most doctors would do. There's no set schedule for ERCPs and a lot of times it seems doctors are starting to push the ERCPs further apart and using MRCPs in the meantime. One of the things that sucker-punches so many of us is how quickly PSC can go from relatively stable to completely not relatively stable in such a small amount of time. You mentioned that you were feeling nervous and it sounds like with good reason. I hope we can help you to feel at least a bit stronger and that it helps to know that you're not alone. If you're looking for another means of support, I'd also encourage you to join our PSC Partners Facebook site. We have a lot of young parents on there and some going through chemo. It's a great place to share stories, information, make connections, get answers, etc. If you don't already have a Facebook account, you'll need one. It's free and easy to set up. You'll just need to go to www.Facebook.com and follow the prompts to set up a free account. Once you have an account, you can either search PSC Partners under Groups or you can contact me, Sandi Pearlman, and I'd be happy to send you the link. I'm not sure if you'll be able to travel with a young child and your current health issues, but we also have an upcoming PSC Conference this May 1-3 in Chicago. If you can, I'd encourage you to come. It's a great place to get information, meet other PSCers, learn about the latest research and gain back some of the power PSC can take away from us. If you'd like any further details, just let me know and I'll be happy to fill you in. Please keep us updated on how you're doing. We'll all keep good thoughts for you! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Leo, Hi! I'm so sorry for all you're going through. This PSC thing sure makes life fun, huh? I can't speak to the Mayo Protocol for chemo/radiology but I'm sure somebody will get back to you on that soon. I just wanted to welcome you to the group and let you know that we're always here to listen, so feel free to write in anytime. We'll be there for you! In regard to your ERCP, I would guess that your doctor did what most doctors would do. There's no set schedule for ERCPs and a lot of times it seems doctors are starting to push the ERCPs further apart and using MRCPs in the meantime. One of the things that sucker-punches so many of us is how quickly PSC can go from relatively stable to completely not relatively stable in such a small amount of time. You mentioned that you were feeling nervous and it sounds like with good reason. I hope we can help you to feel at least a bit stronger and that it helps to know that you're not alone. If you're looking for another means of support, I'd also encourage you to join our PSC Partners Facebook site. We have a lot of young parents on there and some going through chemo. It's a great place to share stories, information, make connections, get answers, etc. If you don't already have a Facebook account, you'll need one. It's free and easy to set up. You'll just need to go to www.Facebook.com and follow the prompts to set up a free account. Once you have an account, you can either search PSC Partners under Groups or you can contact me, Sandi Pearlman, and I'd be happy to send you the link. I'm not sure if you'll be able to travel with a young child and your current health issues, but we also have an upcoming PSC Conference this May 1-3 in Chicago. If you can, I'd encourage you to come. It's a great place to get information, meet other PSCers, learn about the latest research and gain back some of the power PSC can take away from us. If you'd like any further details, just let me know and I'll be happy to fill you in. Please keep us updated on how you're doing. We'll all keep good thoughts for you! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Leo, Hi! I'm so sorry for all you're going through. This PSC thing sure makes life fun, huh? I can't speak to the Mayo Protocol for chemo/radiology but I'm sure somebody will get back to you on that soon. I just wanted to welcome you to the group and let you know that we're always here to listen, so feel free to write in anytime. We'll be there for you! In regard to your ERCP, I would guess that your doctor did what most doctors would do. There's no set schedule for ERCPs and a lot of times it seems doctors are starting to push the ERCPs further apart and using MRCPs in the meantime. One of the things that sucker-punches so many of us is how quickly PSC can go from relatively stable to completely not relatively stable in such a small amount of time. You mentioned that you were feeling nervous and it sounds like with good reason. I hope we can help you to feel at least a bit stronger and that it helps to know that you're not alone. If you're looking for another means of support, I'd also encourage you to join our PSC Partners Facebook site. We have a lot of young parents on there and some going through chemo. It's a great place to share stories, information, make connections, get answers, etc. If you don't already have a Facebook account, you'll need one. It's free and easy to set up. You'll just need to go to www.Facebook.com and follow the prompts to set up a free account. Once you have an account, you can either search PSC Partners under Groups or you can contact me, Sandi Pearlman, and I'd be happy to send you the link. I'm not sure if you'll be able to travel with a young child and your current health issues, but we also have an upcoming PSC Conference this May 1-3 in Chicago. If you can, I'd encourage you to come. It's a great place to get information, meet other PSCers, learn about the latest research and gain back some of the power PSC can take away from us. If you'd like any further details, just let me know and I'll be happy to fill you in. Please keep us updated on how you're doing. We'll all keep good thoughts for you! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 Thank you all so much for your kindness, welcoming words and giving me some ideas that I am not alone here.I made it through my 1.5 to 2 hours in the MRCP yesterday (3 different MRI scans in a row with no break) thanks to the wonders of Valium. Last night I also had my Chest CT scan which was easy peasy.My wife and I leave for UW hospital in a little bit to find out from Dr. Musat (sp?) if I am a candidate for Mayo Protocol or not. I've been praying every night and every waking moment that things went well with the scans yesterday and that I am still eligible.It has helped take some of the anxiety away to know that many of you were doing yearly MRCP tests and that my GI covered all the bases. I just keep getting pangs of nervousness hoping that it didn't start showing up right after my last MRCP last May. I know it's just my brain working overtime, but I'm sure many of you can relate to the pins and needles of waiting for test results.I signed up for the Facebook group and have been reading various posts about people's experiences with chemo/radiation both with and without the Mayo Protocol and it helps me immensely to know. I never thought I'd be looking forward to hearing a Dr. say 'you are starting chemo/radiation next week' but that's exactly where my wife and I are at.I'll post more (with hopefully good news!!!) later today after I meet with the transplant docs.Thank you all,-leoTo: Sent: Saturday, February 7, 2009 9:41:28 PMSubject: Re: New here and need some advice and calming words... Leo, Hi! I'm so sorry for all you're going through. This PSC thing sure makes life fun, huh? I can't speak to the Mayo Protocol for chemo/radiology but I'm sure somebody will get back to you on that soon. I just wanted to welcome you to the group and let you know that we're always here to listen, so feel free to write in anytime. We'll be there for you! In regard to your ERCP, I would guess that your doctor did what most doctors would do. There's no set schedule for ERCPs and a lot of times it seems doctors are starting to push the ERCPs further apart and using MRCPs in the meantime. One of the things that sucker-punches so many of us is how quickly PSC can go from relatively stable to completely not relatively stable in such a small amount of time. You mentioned that you were feeling nervous and it sounds like with good reason. I hope we can help you to feel at least a bit stronger and that it helps to know that you're not alone. If you're looking for another means of support, I'd also encourage you to join our PSC Partners Facebook site. We have a lot of young parents on there and some going through chemo. It's a great place to share stories, information, make connections, get answers, etc. If you don't already have a Facebook account, you'll need one. It's free and easy to set up. You'll just need to go to www.Facebook. com and follow the prompts to set up a free account. Once you have an account, you can either search PSC Partners under Groups or you can contact me, Sandi Pearlman, and I'd be happy to send you the link. I'm not sure if you'll be able to travel with a young child and your current health issues, but we also have an upcoming PSC Conference this May 1-3 in Chicago. If you can, I'd encourage you to come. It's a great place to get information, meet other PSCers, learn about the latest research and gain back some of the power PSC can take away from us. If you'd like any further details, just let me know and I'll be happy to fill you in. Please keep us updated on how you're doing. We'll all keep good thoughts for you! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 Thank you all so much for your kindness, welcoming words and giving me some ideas that I am not alone here.I made it through my 1.5 to 2 hours in the MRCP yesterday (3 different MRI scans in a row with no break) thanks to the wonders of Valium. Last night I also had my Chest CT scan which was easy peasy.My wife and I leave for UW hospital in a little bit to find out from Dr. Musat (sp?) if I am a candidate for Mayo Protocol or not. I've been praying every night and every waking moment that things went well with the scans yesterday and that I am still eligible.It has helped take some of the anxiety away to know that many of you were doing yearly MRCP tests and that my GI covered all the bases. I just keep getting pangs of nervousness hoping that it didn't start showing up right after my last MRCP last May. I know it's just my brain working overtime, but I'm sure many of you can relate to the pins and needles of waiting for test results.I signed up for the Facebook group and have been reading various posts about people's experiences with chemo/radiation both with and without the Mayo Protocol and it helps me immensely to know. I never thought I'd be looking forward to hearing a Dr. say 'you are starting chemo/radiation next week' but that's exactly where my wife and I are at.I'll post more (with hopefully good news!!!) later today after I meet with the transplant docs.Thank you all,-leoTo: Sent: Saturday, February 7, 2009 9:41:28 PMSubject: Re: New here and need some advice and calming words... Leo, Hi! I'm so sorry for all you're going through. This PSC thing sure makes life fun, huh? I can't speak to the Mayo Protocol for chemo/radiology but I'm sure somebody will get back to you on that soon. I just wanted to welcome you to the group and let you know that we're always here to listen, so feel free to write in anytime. We'll be there for you! In regard to your ERCP, I would guess that your doctor did what most doctors would do. There's no set schedule for ERCPs and a lot of times it seems doctors are starting to push the ERCPs further apart and using MRCPs in the meantime. One of the things that sucker-punches so many of us is how quickly PSC can go from relatively stable to completely not relatively stable in such a small amount of time. You mentioned that you were feeling nervous and it sounds like with good reason. I hope we can help you to feel at least a bit stronger and that it helps to know that you're not alone. If you're looking for another means of support, I'd also encourage you to join our PSC Partners Facebook site. We have a lot of young parents on there and some going through chemo. It's a great place to share stories, information, make connections, get answers, etc. If you don't already have a Facebook account, you'll need one. It's free and easy to set up. You'll just need to go to www.Facebook. com and follow the prompts to set up a free account. Once you have an account, you can either search PSC Partners under Groups or you can contact me, Sandi Pearlman, and I'd be happy to send you the link. I'm not sure if you'll be able to travel with a young child and your current health issues, but we also have an upcoming PSC Conference this May 1-3 in Chicago. If you can, I'd encourage you to come. It's a great place to get information, meet other PSCers, learn about the latest research and gain back some of the power PSC can take away from us. If you'd like any further details, just let me know and I'll be happy to fill you in. Please keep us updated on how you're doing. We'll all keep good thoughts for you! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 Thank you all so much for your kindness, welcoming words and giving me some ideas that I am not alone here.I made it through my 1.5 to 2 hours in the MRCP yesterday (3 different MRI scans in a row with no break) thanks to the wonders of Valium. Last night I also had my Chest CT scan which was easy peasy.My wife and I leave for UW hospital in a little bit to find out from Dr. Musat (sp?) if I am a candidate for Mayo Protocol or not. I've been praying every night and every waking moment that things went well with the scans yesterday and that I am still eligible.It has helped take some of the anxiety away to know that many of you were doing yearly MRCP tests and that my GI covered all the bases. I just keep getting pangs of nervousness hoping that it didn't start showing up right after my last MRCP last May. I know it's just my brain working overtime, but I'm sure many of you can relate to the pins and needles of waiting for test results.I signed up for the Facebook group and have been reading various posts about people's experiences with chemo/radiation both with and without the Mayo Protocol and it helps me immensely to know. I never thought I'd be looking forward to hearing a Dr. say 'you are starting chemo/radiation next week' but that's exactly where my wife and I are at.I'll post more (with hopefully good news!!!) later today after I meet with the transplant docs.Thank you all,-leoTo: Sent: Saturday, February 7, 2009 9:41:28 PMSubject: Re: New here and need some advice and calming words... Leo, Hi! I'm so sorry for all you're going through. This PSC thing sure makes life fun, huh? I can't speak to the Mayo Protocol for chemo/radiology but I'm sure somebody will get back to you on that soon. I just wanted to welcome you to the group and let you know that we're always here to listen, so feel free to write in anytime. We'll be there for you! In regard to your ERCP, I would guess that your doctor did what most doctors would do. There's no set schedule for ERCPs and a lot of times it seems doctors are starting to push the ERCPs further apart and using MRCPs in the meantime. One of the things that sucker-punches so many of us is how quickly PSC can go from relatively stable to completely not relatively stable in such a small amount of time. You mentioned that you were feeling nervous and it sounds like with good reason. I hope we can help you to feel at least a bit stronger and that it helps to know that you're not alone. If you're looking for another means of support, I'd also encourage you to join our PSC Partners Facebook site. We have a lot of young parents on there and some going through chemo. It's a great place to share stories, information, make connections, get answers, etc. If you don't already have a Facebook account, you'll need one. It's free and easy to set up. You'll just need to go to www.Facebook. com and follow the prompts to set up a free account. Once you have an account, you can either search PSC Partners under Groups or you can contact me, Sandi Pearlman, and I'd be happy to send you the link. I'm not sure if you'll be able to travel with a young child and your current health issues, but we also have an upcoming PSC Conference this May 1-3 in Chicago. If you can, I'd encourage you to come. It's a great place to get information, meet other PSCers, learn about the latest research and gain back some of the power PSC can take away from us. If you'd like any further details, just let me know and I'll be happy to fill you in. Please keep us updated on how you're doing. We'll all keep good thoughts for you! Sandi in VA Quote Link to comment Share on other sites More sharing options...
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