That sure doesn't sound like such a long time, does it? Heck, the typical home mortgage is 180 to 360 months. Even some car loans are in the range of 84 to 120 months.But when you're talking about cancer survival it's an entirely different story. It is a long time. And I should know, because that's how long it's been since that fateful blood test that led to my diagnosis of mantle cell lymphoma (MCL).
That's 100 months of living with a terminal illness, 100 months of blood tests (121 total) watching my numbers gradually degrade, and 100 months of stress, waiting for the next shoe to drop.
But when I read the results of trials, which consider remissions of 6, 12 or 24 month as being good results, along with the numerous problems and complications experienced by others, I can't help but also think of 100 months as being a milestone. Especially considering I haven't had any treatment, and still feel like I'm in pretty damn good shape. I even rode my bike 70 miles this morning, and managed not to get dropped [until the very end], despite a pretty rapid pace. Of course I am pretty tired right about now.I know I've obsessed over this before, but I can't stop wondering how I've managed to be so fortunate. Like I've said many times before, if I didn't know I was sick, I wouldn't know I was sick. And I doubt many others would think so either.
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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.
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.
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.
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.
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.