Comments on: About Me http://livingwithmcl.com The ramblings of a mantle cell lymphoma survivor Mon, 21 May 2012 14:12:53 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: Andy DeSantis http://livingwithmcl.com/introduction/comment-page-1/#comment-5827 Andy DeSantis Mon, 06 Feb 2012 12:33:30 +0000 http://livingwithmcl.com/index.php/introduction/#comment-5827 I was just thinking about MCL survival and found this blog through google. I was diagnosed with Stage IV MCL almost 8 years ago. Underwent R-HyperCVAD chemo and went into complete remission after three rounds. Relapsed a year and an half later and opted for aggressive treatment. RICE followed by a min--allo SCT in late summer 2006. I was fortunate that my 5 year younger sister was a perfect match. Withstood the SCT well however 5 months later developed Stage IV GVHD of both the skin and small intestine. Hospitalized for 3 months and couldn't eat. I received nutrition and meds intravenously. Bone Marrow Transplant specialists at Massachusetts General Hospital tried all sorts of medications to treat intestional GVHD and finally found sucess with a treatment used for Chron's Disease. Except for bi-monthly visits to BMT Center for infusion of immunoglobin, no other issues. Working full time and going about life. Andy I was just thinking about MCL survival and found this blog through google. I was diagnosed with Stage IV MCL almost 8 years ago. Underwent R-HyperCVAD chemo and went into complete remission after three rounds. Relapsed a year and an half later and opted for aggressive treatment. RICE followed by a min–allo SCT in late summer 2006. I was fortunate that my 5 year younger sister was a perfect match. Withstood the SCT well however 5 months later developed Stage IV GVHD of both the skin and small intestine. Hospitalized for 3 months and couldn’t eat. I received nutrition and meds intravenously. Bone Marrow Transplant specialists at Massachusetts General Hospital tried all sorts of medications to treat intestional GVHD and finally found sucess with a treatment used for Chron’s Disease. Except for bi-monthly visits to BMT Center for infusion of immunoglobin, no other issues. Working full time and going about life.

Andy

]]> By: Sandee http://livingwithmcl.com/introduction/comment-page-1/#comment-5815 Sandee Tue, 31 Jan 2012 21:46:35 +0000 http://livingwithmcl.com/index.php/introduction/#comment-5815 Marc, It has been a long time or too long, but I think we are related. My father's name was Isadore (Sailor). If you are who I think you are, please send me an email at sandeecow@aol.com. I remember your father Uncle Jock. You look great! Sandee Marc,

It has been a long time or too long, but I think we are related. My father’s name was Isadore (Sailor). If you are who I think you are, please send me an email at sandeecow@aol.com. I remember your father Uncle Jock.

You look great!

Sandee

]]> By: John Wisniewski http://livingwithmcl.com/introduction/comment-page-1/#comment-5812 John Wisniewski Sun, 29 Jan 2012 21:17:52 +0000 http://livingwithmcl.com/index.php/introduction/#comment-5812 Marc, I have learned so much from your site. I am planning to visit one or two major cancer centers on the west coast. Over the course of your study of MCL, have you come across Doctors who are experienced with MCL and are cutting edge in terms of approach. I was dx'd stage IV one month ago (cervical lymph node and 5% bone marrow involvement) but with zero symptoms and feeling quite fine actually. Thanks, John Marc, I have learned so much from your site. I am planning to visit one or two major cancer centers on the west coast. Over the course of your study of MCL, have you come across Doctors who are experienced with MCL and are cutting edge in terms of approach. I was dx’d stage IV one month ago (cervical lymph node and 5% bone marrow involvement) but with zero symptoms and feeling quite fine actually. Thanks, John

]]> By: Marjorie Klee http://livingwithmcl.com/introduction/comment-page-1/#comment-5678 Marjorie Klee Thu, 07 Jul 2011 07:57:19 +0000 http://livingwithmcl.com/index.php/introduction/#comment-5678 Marc, I was so excited to see your email come in from lymphomation! I was just released from the hospital after a really bad reaction after my 4th r-chop. I am DONE with chemo. I will not let it kill me. I am not going off the deep end, but rather taking control of my life. I am going to try the wholistic approach and live my quality life to the fullest. Thanks , for the informative blog. I will be following it. Marc, I was so excited to see your email come in from lymphomation! I was just released from the hospital after a really bad reaction after my 4th r-chop. I am DONE with chemo. I will not let it kill me. I am not going off the deep end, but rather taking control of my life. I am going to try the wholistic approach and live my quality life to the fullest. Thanks , for the informative blog. I will be following it.

]]> By: Rachel http://livingwithmcl.com/introduction/comment-page-1/#comment-5674 Rachel Mon, 27 Jun 2011 20:04:06 +0000 http://livingwithmcl.com/index.php/introduction/#comment-5674 Hi Marc, I am just wondering if you had any problems with sleep after finishing treatment? My husband had Stage IV MCL- and finished treatment just a few months ago- and is in Remission!... and is growing his hair back too! He is having so much trouble staying asleep at night though, that he is now on sleeping pills- but still no relief. I am just wondering if you heard of that before? He's so exhausted that it's hard to function. You can reach me at nilzam@aol.com. Please put MCL in the title. Thanks! -Rachel PS If anyone else wants to reach me regarding our experience with MCL- feel free to at nilzam@aol.com, and again- please put MCL in the title of the email. (Today is 06/27/2011) Hi Marc,
I am just wondering if you had any problems with sleep after finishing treatment? My husband had Stage IV MCL- and finished treatment just a few months ago- and is in Remission!… and is growing his hair back too! He is having so much trouble staying asleep at night though, that he is now on sleeping pills- but still no relief. I am just wondering if you heard of that before? He’s so exhausted that it’s hard to function. You can reach me at nilzam@aol.com. Please put MCL in the title. Thanks! -Rachel
PS If anyone else wants to reach me regarding our experience with MCL- feel free to at nilzam@aol.com, and again- please put MCL in the title of the email. (Today is 06/27/2011)

]]> By: Mick http://livingwithmcl.com/introduction/comment-page-1/#comment-5659 Mick Sat, 28 May 2011 16:11:01 +0000 http://livingwithmcl.com/index.php/introduction/#comment-5659 Just been diagnosed with MCL. Prognosis seems grim speaking to my specialist in the UK but I have to say your blog is inspirational. It's great to hear someone with such courage, you and others like you make me realise there is hope. I'm a 48 year old divorcee with 2 kid's my sons ten and lives with me and my new partner. Between them they give me every reason to live and you show that you can. We're getting on with living and planning to get married in the next few months. Can't thank you enough. Cheers. Just been diagnosed with MCL. Prognosis seems grim speaking to my specialist in the UK but I have to say your blog is inspirational. It’s great to hear someone with such courage, you and others like you make me realise there is hope. I’m a 48 year old divorcee with 2 kid’s my sons ten and lives with me and my new partner. Between them they give me every reason to live and you show that you can. We’re getting on with living and planning to get married in the next few months. Can’t thank you enough. Cheers.

]]> By: Rachel http://livingwithmcl.com/introduction/comment-page-1/#comment-5646 Rachel Sun, 10 Apr 2011 18:00:52 +0000 http://livingwithmcl.com/index.php/introduction/#comment-5646 Thanks for sharing! My husband (age 53) just finished treatment for MCL, and is now in remission! It's really scary - that this disease can reappear. This coming week he goes in for his last treatment- and hospital stay. I only hope his remission is as long as a long lifetime. I am happy to hear that the remission from MCL can last many, many years! Thanks for sharing! My husband (age 53) just finished treatment for MCL, and is now in remission! It’s really scary – that this disease can reappear. This coming week he goes in for his last treatment- and hospital stay. I only hope his remission is as long as a long lifetime. I am happy to hear that the remission from MCL can last many, many years!

]]> By: Stephen Joyce http://livingwithmcl.com/introduction/comment-page-1/#comment-5632 Stephen Joyce Fri, 18 Mar 2011 17:20:05 +0000 http://livingwithmcl.com/index.php/introduction/#comment-5632 Hi Marc - I am 45 and was diagnosed with MCL stage 2A last November aged 44. I have just finished 18 weeks of R-CHOP chemo and am in remission. I have also been blogging as therapy. Glad you are still well. I am confused as to what to do now as the prognosis is so apparently poor. Anyway, I will be following you from now on. Stephen Hi Marc – I am 45 and was diagnosed with MCL stage 2A last November aged 44. I have just finished 18 weeks of R-CHOP chemo and am in remission. I have also been blogging as therapy. Glad you are still well. I am confused as to what to do now as the prognosis is so apparently poor. Anyway, I will be following you from now on. Stephen

]]> By: JEMi http://livingwithmcl.com/introduction/comment-page-1/#comment-4071 JEMi Thu, 10 Jan 2008 22:03:26 +0000 http://livingwithmcl.com/index.php/introduction/#comment-4071 I am encouraged, slightly horrified, and inspired by this entire.. blog you've greated. A random click brought me to your site and after a few moments of looking around I came and read your about page. I'm glad I did and I will be sure to check in from time to time. You're living a whole lot of life thank you for sharing that with all of us :) I am encouraged, slightly horrified, and inspired by this entire.. blog you’ve greated. A random click brought me to your site and after a few moments of looking around I came and read your about page.

I’m glad I did and I will be sure to check in from time to time.

You’re living a whole lot of life

thank you for sharing that with all of us :)

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