I want to pass on two surveys to you all, and encourage you to take both of them.
I have taken both, and they each take about 10 minutes to complete.
Both are meant for Lymphoma patients of all kinds, and are meant to gather information about our experiences as patients so the organizations can find ways to better help us.
The first one is the 2018 Lymphoma Coalition Global Patient Survey.
The Lymphoma Coalition is an organization made up of other Lymphoma support organizations -- 71 different organizations from 48 different countries (including my friends at Patients Against Lymphoma/Lymphomation.org and Lymphoma Canada).
So this survey is truly "global." It is conducted every 2 years, and the information is used to make the world aware of trends -- things like how accessible lymphoma treatments are. The information can be used by individual organizations to advocate for patients.
The second survey is from WEGO Health. (You might remember that I made a video for WEGO Health a few months ago.)
WEGO is looking for information about how much Lymphoma patients know about Lymphoma, especially about sub-types other than their own. (It's not a quiz about Lymphoma sub-types or anything like that -- just asking you how well you think you know about them.)
Like the first survey, this one takes about 10 minutes. Read carefully -- you have the choice to answer one about Leukemia OR one about Lymphoma, so respond to the right one.
You can find the WEGO Health survey here.
Thanks for your help -- both organizations appreciate it.
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8 comments:
Hi Bob
I completed the first survey; many of the questions could best be answered with "Not Applicable". This response was not available for many of the questions.
The second survey (WEGO) appears to apply only to patients/caregivers with AML, CML, ALL, and SLL. I did not complete it.
William
William,
The survey starts out with questions about Leukemia. If you answer that you are not a Leukemia patient, it should bring you to the Lymphoma questions. A little confusing, I agree.
Hello Bob,
Thank you for passing along the surveys. We will take the time to complete both surveys.
We are feeling very nervous at this time. My wife is almost 3 years post treatment, and we received good scans at the end of December. Our doctor graduated us to yearly scans after that last scan. Everything was great and we were feeling really good. We even have a trip planned to Hawaii, with the kids. Well, last weekend she started complaining about discomfort in one of the lymph nodes in her pelvic area. We gave it a couple days, thinking maybe she pulled a muscle. The pain and swelling never really went away, so we decided to visit with our oncologist. The decision was made to have another scan. We are waiting for the results.
I am hoping that this is not a transformation. It seems like it came rather quickly, being that we just had a scan a month ago. We are hoping that it is only some sort of infection and thus a false alarm. The waiting is always the worst.
I was feeling a little down today and needed a place to vent. I have found comfort in your blog over the years.
Thanks for everything,
Kevin
Kevin - I hope all is well but I completely understand how you are feeling. Every ache, pain,and minor symptom my husband gets (he is a FL survivor 4+ years) makes our hearts sink and our minds race. Luckily, so far so good. We wish the same for you and your wife. Keep us posted.
Carol
Carol, thank you for your kind words. Unfortunately, the scan came back as suspicion for lymphoma. We are scheduled for PET scan on Tuesday and biopsy on Thursday. We are praying it has not transformed. We see Dr. G on February 15. The scary part is we are only 5 weeks out from last scan.
I hope your husband continues his good health for many more years. Thanks.
Kevin
Our prayers are with you both.
Carol
I just wanted to give an update. The biopsy came back negative for cancer. It has been a long and hard five weeks, but we made it through. We will now probably have to run a battery of tests to determine if an infection is present. It looks like our remission continues. Thanks to everybody for the thoughts and prayers.
Kevin
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