The Leukemia & Lymphoma Society - Fighting Blood Cancers

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6 Posts tagged with the blood_cancers tag
1

Lymphoma in the Blogosphere*

Posted by millss May 5, 2008

You may remember that a few weeks ago we looked at a couple of personal leukemia blogs. This week I thought I’d take a look at lymphoma in the blogosphere.

I just went to Google Blog Search and typed in “lymphoma” – results are well over one million (1,165,066 at the moment) for all time. I then clicked on “last day” in the left column and 190 results were pulled up. A lot of people are talking about lymphoma – and their experiences are very diverse.

Bill, a.k.a. Billy Bird on his blog, recently started to write Lymph Notes. He was diagnosed with lymphoma on December 24, 2007. Recently someone asked him what having cancer has taught him, and he provided his answer on his blog:

I hope that the biggest lesson I have learned is to continue to think positively. Without doubt, I have created a new future committed to allowing myself to love and to accept love, or at least to work on developing such an outcome. That pledge, combined with an ability to think positively, will be the lesson I hope I never forget.
Another blog, A Pastor's Cancer Diary, is written by Carl. He was diagnosed with non-Hodgkin lymphoma in 2005. His posts are filled with anecdotes and spiritual advice for every day life. Earlier this month Carl reflected on the challenges of cancer:
I realize that, in the cancer world, there are far more serious pains, far more grueling challenges than those I’ve had to undergo. Each fresh obstacle presents its own level of difficulty. Yet, I’m coming to realize this same principle holds true, at every level. God is right there with us. The sound of sheer silence speaks. Together we travel, one step at a time.
Do you write a blog? If so, we’d love to take a look!

Learn more about the lymphomas:


*From Wikipedia.org: Blogosphere is a collective term encompassing all blogs and their interconnections. It is the perception that blogs exist together as a connected community (or as a collection of connected communities) or as a social network.

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Spring finally arrived a couple of weeks ago. The weather is still a little chilly here in New York, but the temperatures are definitely trending upward. Before you know it the flowers and trees will start blooming all over again, and I’ll want to write blog posts from the shade of a tree instead!

Spring can be invigorating after a long, cold winter. But for couples who are dealing with the effects of cancer and its treatment, the arrival of spring may not feel the same. This may have been a season you've associated with spending more time with your partner--taking walks, holding hands and showing affection. It's natural to want to relate to your partner in intimate ways...to touch, hug and kiss, to give and receive love. But people with cancer sometimes feel removed from sexual and intimate experiences for any number of reasons.

Some patients or their partners may feel that

  • These are not life or death issues and don't deserve their attention.
  • Sex should be the last thing on one's mind.
  • They are being selfish for being concerned about sex.

Sexuality is not just about physical needs, but also about psychological, social, emotional and spiritual factors. It includes self image, body image, reproductive ability, emotional intimacy, sensual feelings and sexual functioning. Discussing sexuality-related concerns may be important to your quality of life in areas that are not limited to sexual functioning, such as, feeling comfortable with yourself and enjoying close communication with loved ones.

Learn more about how can you cope when your cancer has affected your sexual and intimate relationships by downloading our Sexuality and Intimacy fact sheet.

Also take some time to listen to our recent teleconference, Sexuality and Intimacy After Cancer, a telephone education event that featured Sage Bolte, MSW, LCSW, OSW-C.

Consider sharing your experiences here. Has cancer affected your relationship with your partner? How have you and your partner handled this?

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We sponsor a lot of very interesting teleconferences, but they usually take place on a weekday in the middle of a day. This means that many people who are at work or busy doing something else are not able to listen to these live events. Luckily we have our telephone education programs archived on our website, and additionally we have several podcast feeds.

Up until just a few days ago we had three podcast feeds:


We just added seven more podcast feeds to make it easier for people to listen to the teleconferences they are interested in. Here’s a list of our new feeds:


Okay – so a lot of people may not know what RSS or podcasts are. I’ll try to explain.

Really Simple Syndication (RSS) has been around for quite a while (since about 1999), but it hasn’t really taken off until the last few years. Personally, I didn’t really start to utilize it myself until a couple of years ago, but now I am taking advantage of it on almost a daily basis.

RSS allows you to read content from all of your favorite websites in one place. Do you find that you don’t have time to visit all of those websites on a daily basis, but you still want to read their content? The solution is to create an account with an aggregation service like Google Reader or Newsgator, then add your favorite website’s feed to the aggregator. At this point those websites syndicate their information to you.

A podcast feed acts the same way, except instead of text-based content, websites (like ours) can syndicate their digital media files (like teleconferences) to you. With our podcast feeds you’ll always stay up to date when there is a new teleconference, making it so you have less of a chance to miss that important and informative information.

Learn more about our new feeds and RSS on our LLS News Feeds and Podcasts page.

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It's so much faster to type MDS rather than Myelodysplastic Syndrome (and easier, too, since I still manage to misspell it). At the same time, though, it can be confusing for people not as familiar with what those abbreviations mean - and especially so for people who are new to the blood cancers.

So what can you do to keep yourself or others straight on all the MDSs or NHLs besides carrying around a reference card?

I'd recommend looking at We need a Quick Reference for Abbreviations, a topic initiated on our Discussion Boards by Lynda. You can also visit our search glossary and type in the abbreviation you are interested in learning more about.

Here are a few to get you started:*

AML = Acute Myelogenous Leukemia
ALL = Acute Lymphocytic Leukemia
CML = Chronic Myelogenous Leukemia
CLL = Chronic Lymphocytic Leukemia
NHL = Non-Hodgkin Lymphoma
MDS = Myelodysplastic Syndrome

Do you have any tips or tricks on how to remember so many abbreviations and their meanings?

*Learn more about leukemia, lymphoma, myelodysplastic syndrome, and other blood cancers in our Disease Information section on our website.

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Currently, many adults do not participate in clinical trials because insurance companies refuse to cover routine care expenses for patients who choose to enroll in a clinical trial. Increasing participation in clinical trials is one of the best ways to speed new cures to the doctor’s office, the hospital bedside, and the infusion room. Fortunately, Congresswoman Deborah Pryce has introduced a measure, H.R. 2676, which would require insurance companies to cover routine care expenses for patients enrolled in clinical trials. However, Congresswoman Pryce’s measure needs your help. Please contact your member of Congress to urge them to cosponsor H.R. 2676.

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Today we are launching The Leukemia & Lymphoma Society’s first blog! There are a few things that we hope to accomplish with this new communication tool, but most of all we want to make this an informative and interesting destination for you: patients, caregivers, and anyone else affected by any of the blood cancers.

A few topics we plan to cover are advocacy, teleconferences, news articles, and more…

We’d love to get ideas from you, though. What do YOU want us to write about? (To comment you must first register if you haven’t already – registration is easy and free!)

To make sure you are the first to know when we have posted a new blog entry subscribe to our RSS feed. Or you can bookmark this webpage in your browser and visit us often.

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