Skip to main content

Lymphoma message boards

Despite my best intentions, I've not been able to sever myself from the myriad of message boards/discussion groups (some highlighted on the right sidebar) I belong to. I knew severing myself from the internet would be a daunting task, but I didn't think it would be that difficult when it came to the message boards.

When I was first diagnosed, they were helpful. It's how I learned I likely didn't have CLL (my original diagnosis), and that my original doctor wasn't as dedicated as I would have hoped. But now I get little or no information of value.

I've tried imparting some of the knowledge I've gained over the past 11+ years to some on the message boards, but I've never been the most tactful person, and some people actually take offense to some of my insights. So I rarely if ever participate anymore.

So why I keep cluttering up my computer with information of so little value is beyond me?

They do provide the rare blog post idea, and I have found the Multiple Myeloma message board to be helpful when it comes to understanding Edie's disease (which I find way too complicated to fully comprehend) and available treatments, but not much more.

There are, however, two websites I do still find helpful, and provide valuable information, for those in similar situations to mine, without all the extraneous bull*$#@.

The first is Lymphomation.org. Karl has spent a great deal of time putting together a website dedicated to Lymphoma, providing information of value to everyone. He also keeps me up to date through his forum, and daily mailing of current news.

The second is Non-Hodgkin's Lymphoma Cyberfamily. It's basically the same idea as Karl's group, it's just less varied,  focusing more directly on NHL.

Between the two, I prefer the former, but you are free to disagree.
Labels:

Comments

Michael Foxworth said…
Marc, Glad to see your presence on G+ and to view today your blog posting about MCL MESSAGE BOARDS, the link to which I have tweeted and reposted at CANswer?WORTH alt@cities® http://flip.it/dEbHl via @flipboard
11:48 PM
Post a Comment

Popular posts from this blog

The results are in

And I am iron deficient, big time. [Which would account for my low hemoglobin] Test Result Ref Range IRON 30 59-158 mcg/dL TOTAL IRON BINDING CAPACITY 231 250-420 mcg/dL IRON SAT 13 20-50 % My Ferritin levels were good, but that could be because Ferritin is also an "acute phase reactant", that is sometimes increased with acute or chronic disease. Folate and B12 levels were also within the normal range. The only problem now is determining what is causing the iron deficiency, which in the case of men, is [very] rare. My oncologist has given me a Globin Fecal test to perform, and has scheduled me for a consultation with a colorectal surgeon to discuss performing a colonoscopy, which could be problematic because of my large spleen. In the mean time, I've decided to start taking an iron supplement, it's only the quantity that is causing me some consternation. I've been told by a very knowledgeable person that to overcome an iron deficiency, I need to be taking 300 mg o...
5 comments
Read more

This is just one of those days

It's one of those days you just want to sit around the house and do absolutely nothing, or watch some movies you have recorded. It might even be a good day to read a book, if you were so inclined, which I am not. As you should be able to see from the view out my bedroom window, it is raining outside. The rain started last night, and hasn't let up since. I can't complain too much though, as this is the rainy season, and we do need the rain. Plus Monday's are typically my day off from exercise, so I will surprise everyone, and not complain. I just feel sorry for anyone who might be visiting from, say Argentina, like a friend of mine (fellow MCLer), who happens to be in Cambria today. He might be a little disappointed. Fortunately the rest of the week, when he will be in LA, will be nice, and the real intent of his trip was to visit his son in Tahoe, who works at one of the ski resorts, and ski, so I know he's not complaining too much either. This weather will actually...
6 comments
Read more

Stop the stupidity!

Rural medical center (in Georgia) suspended from vaccination program after inoculating school district staff. Give me a break! Trying to get kids back to school, while protecting teachers, bus drivers and other staff, is exactly what school districts should be doing. If they have vaccines, give them out. We should be giving out vaccines to all who want them, whenever available. Trying to adhere to rigid guidelines will only result in fewer people getting vaccines, resulting in the discarding of precious vaccines, and less protection for everyone. Of course we should be giving first priority to healthcare workers, and any other essential public service employees, such as policeman, fireman, etc. first, but when they're not around to receive shots, or refuse shots, then give them to anyone willing to take them. What I would have objected to is the medical center trying to capitalize on the pandemic to make a profit, from giving vaccines to people far down the list of recipients, but ...
Post a Comment
Read more