Comments on: 100 months http://livingwithmcl.com/2010/07/25/100-months/ 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: Marc http://livingwithmcl.com/2010/07/25/100-months/comment-page-1/#comment-5446 Marc Tue, 27 Jul 2010 22:49:48 +0000 http://livingwithmcl.com/?p=4585#comment-5446 One good thing about having a blog, just about everything you do is chronicled. And yes I [we] did go to a lymphoma conference in October '09. I <a href="http://livingwithmcl.com/2009/10/07/i-learned-a-lot-on-this-vacation/" target="_blank" rel="nofollow">blogged about it on 10/09</a>, and even commented how I would never go to another again, as it's just the same old stuff. Not sure who put it on, but it would surprise me if it wasn't the <a href="http://lymphoma.org" target="_blank" rel="nofollow">LRF</a>. One good thing about having a blog, just about everything you do is chronicled.

And yes I [we] did go to a lymphoma conference in October ’09. I blogged about it on 10/09, and even commented how I would never go to another again, as it’s just the same old stuff.

Not sure who put it on, but it would surprise me if it wasn’t the LRF.

]]> By: Marc http://livingwithmcl.com/2010/07/25/100-months/comment-page-1/#comment-5445 Marc Tue, 27 Jul 2010 22:10:23 +0000 http://livingwithmcl.com/?p=4585#comment-5445 You know, I'm not sure now. My mind may be going. I am getting pretty old you know. :) But there was a conference in SF last year at the end of September. At least I'm pretty sure it was. I know we went to SF last September/October (I checked my credit card receipts), and I was sure it was for a lymphoma conference. We did drink lots of wine, so I could be getting my vacations confused. Maybe it was a mini conference. I can't seem to find any literature from it though, but I will do some more checking. Maybe next year, especially if it's in NY again. You know, I’m not sure now. My mind may be going. I am getting pretty old you know. :)

But there was a conference in SF last year at the end of September. At least I’m pretty sure it was. I know we went to SF last September/October (I checked my credit card receipts), and I was sure it was for a lymphoma conference.

We did drink lots of wine, so I could be getting my vacations confused.

Maybe it was a mini conference. I can’t seem to find any literature from it though, but I will do some more checking.

Maybe next year, especially if it’s in NY again.

]]> By: Patti Earhart http://livingwithmcl.com/2010/07/25/100-months/comment-page-1/#comment-5444 Patti Earhart Tue, 27 Jul 2010 19:08:42 +0000 http://livingwithmcl.com/?p=4585#comment-5444 Marc, I'm not sure what Lymphoma event you attended last year but the 14th annual North American Educational Forum on Lymphoma put on by the Lymphoma Research Foundation was held in Brooklyn, New York last October. That's where I was. The event is held on different coasts every year. This year it returns to the Hotel Nikko in San Francisco which is where I attended my first one right after my initial diagnosis. Last year we had about 50 mantle cell attendees and we have our own informal discussion group usually after the second breakout MCL seminar on Saturday. It is a very uplifting, well organized affair. Marc, I’m not sure what Lymphoma event you attended last year but the 14th annual North American Educational Forum on Lymphoma put on by the Lymphoma Research Foundation was held in Brooklyn, New York last October. That’s where I was. The event is held on different coasts every year. This year it returns to the Hotel Nikko in San Francisco which is where I attended my first one right after my initial diagnosis. Last year we had about 50 mantle cell attendees and we have our own informal discussion group usually after the second breakout MCL seminar on Saturday. It is a very uplifting, well organized affair.

]]> By: Marc http://livingwithmcl.com/2010/07/25/100-months/comment-page-1/#comment-5442 Marc Mon, 26 Jul 2010 17:50:40 +0000 http://livingwithmcl.com/?p=4585#comment-5442 Thanks Patti, I've been to a few in my 8+ years, but I just don't seem to get much out of them any more. It's mostly a rehash of the same old stuff. I did go to last years, and got some interesting information on Cutaneous T-Cell Lymphoma, which I suspect I may have as well, albeit a very mild version. Too bad we didn't meet up then. As for this year, I might have gone had we not already planned to go to Edie's 40th high school reunion in Ohio the following week. That would just be too much time off the bike. :) Maybe next year. Thanks Patti, I’ve been to a few in my 8+ years, but I just don’t seem to get much out of them any more. It’s mostly a rehash of the same old stuff. I did go to last years, and got some interesting information on Cutaneous T-Cell Lymphoma, which I suspect I may have as well, albeit a very mild version. Too bad we didn’t meet up then.

As for this year, I might have gone had we not already planned to go to Edie’s 40th high school reunion in Ohio the following week.

That would just be too much time off the bike. :)

Maybe next year.

]]> By: Patti Earhart http://livingwithmcl.com/2010/07/25/100-months/comment-page-1/#comment-5441 Patti Earhart Mon, 26 Jul 2010 17:03:35 +0000 http://livingwithmcl.com/?p=4585#comment-5441 Why don't you join fellow mantle cell survivors at the <a href="http://www.lymphoma.org/site/pp.asp?c=chKOI6PEImE&b=4809581" target="_blank" rel="nofollow">North American Educational Forum on Lymphoma</a> this September. You can share your good fortune and expertise with us and maybe learn a thing or two you don't know. Even if you don't learn anything new it is a worthwhile experience. This is my third year. One of our MCL group members has lived over 20 years with the disease (has had treatment) and he is a fellow RVer who is still traveling. We all make a point of meeting informally to share our latest info and status and the moderator of the group has survived over 15 years. I was told I must have an allo transplant last year which I shared with the group. I ended up switching my treatment care to Stanford and was told that I didn't need such a drastic procedure. They sent me home and told me to live a normal life. We are at the end of a 2 month trip in our fifth wheel from San Diego to Waterloo, NY. I need monthly labs and a port flush and I arrange for my neupogen to be shipped to campgrounds. I am still neutropenic after my Cladribine put me into remission a year and a half ago. I feel great! The conference provides camaraderie with fellow Lymphoma patients and caregivers, the seminars are usually very good and they serve wine at the welcome reception. Also, the Hotel Nikko is a pretty nice hotel. Why don’t you join fellow mantle cell survivors at the North American Educational Forum on Lymphoma this September. You can share your good fortune and expertise with us and maybe learn a thing or two you don’t know. Even if you don’t learn anything new it is a worthwhile experience. This is my third year. One of our MCL group members has lived over 20 years with the disease (has had treatment) and he is a fellow RVer who is still traveling. We all make a point of meeting informally to share our latest info and status and the moderator of the group has survived over 15 years. I was told I must have an allo transplant last year which I shared with the group. I ended up switching my treatment care to Stanford and was told that I didn’t need such a drastic procedure. They sent me home and told me to live a normal life. We are at the end of a 2 month trip in our fifth wheel from San Diego to Waterloo, NY. I need monthly labs and a port flush and I arrange for my neupogen to be shipped to campgrounds. I am still neutropenic after my Cladribine put me into remission a year and a half ago. I feel great!

The conference provides camaraderie with fellow Lymphoma patients and caregivers, the seminars are usually very good and they serve wine at the welcome reception. Also, the Hotel Nikko is a pretty nice hotel.

]]> By: Marc http://livingwithmcl.com/2010/07/25/100-months/comment-page-1/#comment-5439 Marc Sun, 25 Jul 2010 23:16:38 +0000 http://livingwithmcl.com/?p=4585#comment-5439 By levels, I assume you are referring to my absolute lymphocyte count. There really isn't a level. My original oncologist thought we might start treatment when my lymphs got to 100K. As you would note they've exceeded that already, but have since come down. So in hindsight that would seem to be an incorrect guideline. Plus most doctors agree, you treat the patient, not the disease. As long as I'm feeling fine, I'm not going to do anything. Of course that can change at any moment, which is why I dwell on it so much. More important to watch is the platelet count, as it is usually the first sign of bone marrow failure. Should it start to drop precipitously, or just get too low over time, then I would certainly consider treatment. Currently they are still in the normal range. I did however come across some statistics related to CLL, which has some relevance in my case (just how much is in question) which indicates <blockquote>The median survivals, censored for unrelated deaths, were 102 months for patients with 100% IgVH gene homology; 132 months for those with 98-99.9%, 184 months for those with 97-97.9% and not yet reached for those with 96% or <96%</blockquote> I happen to have 96.9% IgVH gene homology. So I may end up living forever, or at least another 84+ months. Of course I don't have CLL either, which could make those results meaningless, but they do seem to be tracking for now. Only time will tell. It's just difficult (stressful) constantly dealing with the possibilities. By levels, I assume you are referring to my absolute lymphocyte count.

There really isn’t a level. My original oncologist thought we might start treatment when my lymphs got to 100K. As you would note they’ve exceeded that already, but have since come down. So in hindsight that would seem to be an incorrect guideline. Plus most doctors agree, you treat the patient, not the disease. As long as I’m feeling fine, I’m not going to do anything.

Of course that can change at any moment, which is why I dwell on it so much. More important to watch is the platelet count, as it is usually the first sign of bone marrow failure. Should it start to drop precipitously, or just get too low over time, then I would certainly consider treatment. Currently they are still in the normal range.

I did however come across some statistics related to CLL, which has some relevance in my case (just how much is in question) which indicates

The median survivals, censored for unrelated deaths, were 102 months for patients with 100% IgVH gene homology; 132 months for those with 98-99.9%, 184 months for those with 97-97.9% and not yet reached for those with 96% or <96%

I happen to have 96.9% IgVH gene homology. So I may end up living forever, or at least another 84+ months. Of course I don’t have CLL either, which could make those results meaningless, but they do seem to be tracking for now.

Only time will tell. It’s just difficult (stressful) constantly dealing with the possibilities.

]]> By: Susan C http://livingwithmcl.com/2010/07/25/100-months/comment-page-1/#comment-5437 Susan C Sun, 25 Jul 2010 22:17:25 +0000 http://livingwithmcl.com/?p=4585#comment-5437 What level would you have to reach before the doctors said, "Let's take action."? What level would you have to reach before the doctors said, “Let’s take action.”?

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