Comments for Living with MCL http://livingwithmcl.com The ramblings of a mantle cell lymphoma survivor Mon, 06 Feb 2012 12:33:30 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on About Me 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

]]> Comment on About Me 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

]]> Comment on About Me 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

]]> Comment on Rating US health care providers by Marc http://livingwithmcl.com/2012/01/27/rating-our-health-care-providers/comment-page-1/#comment-5808 Marc Fri, 27 Jan 2012 15:02:48 +0000 http://livingwithmcl.com/?p=7118#comment-5808 Jeez! That was quick. I only posted it 4 minutes ago. Thanks for the comment. Jeez! That was quick. I only posted it 4 minutes ago.

Thanks for the comment.

]]> Comment on Rating US health care providers by Alan Posner http://livingwithmcl.com/2012/01/27/rating-our-health-care-providers/comment-page-1/#comment-5807 Alan Posner Fri, 27 Jan 2012 14:59:05 +0000 http://livingwithmcl.com/?p=7118#comment-5807 That was a good one. I agree with all your points. The only ones who know who are the good doctors are the other doctors. An they're not telling. That was a good one. I agree with all your points.

The only ones who know who are the good doctors are the other doctors. An they’re not telling.

]]> Comment on If it’s not one thing, it’s another by Marc http://livingwithmcl.com/2012/01/24/if-its-not-one-thing-its-another-2/comment-page-1/#comment-5806 Marc Tue, 24 Jan 2012 21:13:25 +0000 http://livingwithmcl.com/?p=7082#comment-5806 Thanks Mike, and I would no doubt be using it, if it was currently in my possession. But it isn't, and I'm afraid by the time I forked over $55, and received it in the mail, the pain would have gone away. At least I'm hoping that is going to be the case! Plus it's only a 2" x 4" area of my next that is hurting, so a 14" x 27" pad seems a bit oversized. I do appreciate the thought, but for now I think I'll just stick it out and hope for the best. Thanks Mike, and I would no doubt be using it, if it was currently in my possession. But it isn’t, and I’m afraid by the time I forked over $55, and received it in the mail, the pain would have gone away. At least I’m hoping that is going to be the case!

Plus it’s only a 2″ x 4″ area of my next that is hurting, so a 14″ x 27″ pad seems a bit oversized.

I do appreciate the thought, but for now I think I’ll just stick it out and hope for the best.

]]> Comment on If it’s not one thing, it’s another by Mike Foxworth http://livingwithmcl.com/2012/01/24/if-its-not-one-thing-its-another-2/comment-page-1/#comment-5805 Mike Foxworth Tue, 24 Jan 2012 20:39:33 +0000 http://livingwithmcl.com/?p=7082#comment-5805 There's a great homeopathic (no drugs) product out there for muscle pain. It's called the THERMAPHORE which is available for $55 on AMAZON at this link : http://bit.ly/x58MAa or directly on the web. Google it! There’s a great homeopathic (no drugs) product out there for muscle pain. It’s called the THERMAPHORE which is available for $55 on AMAZON at this link : http://bit.ly/x58MAa or directly on the web. Google it!

]]> Comment on If it’s not one thing, it’s another by Doris http://livingwithmcl.com/2012/01/24/if-its-not-one-thing-its-another-2/comment-page-1/#comment-5804 Doris Tue, 24 Jan 2012 19:30:35 +0000 http://livingwithmcl.com/?p=7082#comment-5804 My doctor recommends using ice. Put it on and keep it, first cold, then burning, then turns num. It works for me. My doctor recommends using ice. Put it on and keep it, first cold, then burning, then turns num. It works for me.

]]> Comment on Supplements – Buyer beware! by Marc http://livingwithmcl.com/2012/01/21/supplements-buyer-beware/comment-page-1/#comment-5798 Marc Sat, 21 Jan 2012 20:15:47 +0000 http://livingwithmcl.com/?p=7039#comment-5798 You're not missing much by not listening to Dr. Oz. Like I said, I think he's just a shill for big pharma. Unfortunately too many do listen to him! You’re not missing much by not listening to Dr. Oz. Like I said, I think he’s just a shill for big pharma. Unfortunately too many do listen to him!

]]> Comment on Supplements – Buyer beware! by Kim http://livingwithmcl.com/2012/01/21/supplements-buyer-beware/comment-page-1/#comment-5797 Kim Sat, 21 Jan 2012 20:00:06 +0000 http://livingwithmcl.com/?p=7039#comment-5797 I feel much better now about not taking any vitamins. At all. Ever. I've never seen Dr. Oz. I feel much better now about not taking any vitamins. At all. Ever. I’ve never seen Dr. Oz.

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