This community is for people with Non-Hodgkin’s Lymphoma. Friends, family members and others with an interest in the disease are also encouraged to join the discussion.
Some of the types of Non-Hodgkin’s Lymphoma include: CLL- Chronic Lymphocytic Leukemia, SLL- Small Lymphocytic Lymphoma, Follicular Lymphoma, Mantle Cell Lymphoma, Diffuse Large B-Cell Lymphoma, Burkitt’s Lymphoma, Peripheral T-cell Lymphoma, Cutaneous T-Cell Lymphoma, Mycosis Fungoides, Cutaneous B-Cell Lymphoma
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charles posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 6 days, 17 hours ago · View
Bill
How is the search going?
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charles started the forum topic "mini" stem cell transplants in the group Non-Hodgkin’s Lymphoma: 6 days, 17 hours ago · View
Has anyone undergone a “mini” stem cell transplant that can share their experience.
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charles posted on the forum topic Cutaneous T Cell Lymphoma-New Treatment Developments in the group Non-Hodgkin’s Lymphoma: 1 week ago · View
New treatment option for Cutaneous T Cell Lymphoma; http://news.cancerconnect.com/istodax-active-against-refractory-cutaneous-t-cell-lymphoma/
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charles started the forum topic Lymphoplasmacytic lymphoma also known as Waldenstrom’s macroglobulinemia in the group Non-Hodgkin’s Lymphoma: 1 week, 2 days ago · View
This forum is being set up so individuals with Lymphoplasmacytic Lymphoma have a place to interact, support and disucss….
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lrf2010 posted an update in the group Non-Hodgkin’s Lymphoma: 2 weeks, 6 days ago · View
The Lymphoma Research Foundation (LRF) will be having our 15th Annual North American Educational Forum on Lymphoma on September 24-26, 2010. It is the world’s most comprehensive
educational conference for people touched by the disease of lymphoma. For further information, please visit the following website. http://www.lymphoma.org/edforum. -
charles posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 4 weeks ago · View
If you find other treatment options that look better please let the community know.
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charles started the forum topic Burkitts Lymphoma in the group Non-Hodgkin’s Lymphoma: 4 weeks ago · View
Burkitss Lymphoma is a specific kind of “high grade” lymphoma; this forum is being created for individuals with Burkitts to connect
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lrf2010 posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 1 month, 1 week ago · View
Hi Bill, Welcome to the site and I hope you find it useful as you continue through your treatment and proceed with the transplant process. As you mentioned, up to date information is hard to come by as new research keeps pushing towards new and improved treatment, particularly for MCL. I hope that you were [...]
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kidsworkcancerlife posted an update in the group Non-Hodgkin’s Lymphoma: 1 month, 1 week ago · View
Hi, I want to introduce myself and invite you to follow my blog, http://kidsworkcancerlife.tumblr.com/
I’m a single working mum with two beautiful children and a few months ago I was diagnosed with stage four diffuse large B cell NHL. I’m blogging about the ups and downs of treatment, child-rearing, relationships and life – even though I work in the health care sector I was scared and confused when first diagnosed, and wished somebody had given me a mud-map for what was ahead. I hope I can help others by providing one. I’d also love to connect with other single parents who are living with cancer. Parenting on my own (and trying to do it well) is one of the hardest aspects of cancer for me. But I’ve found it tough trying to track down other single parents with cancer; there doesn’t seem to be any support network designed specifically for us. Please vist my blog and be in touch with me if you’re in a similar situation or want to chat.
Welcome to the site! I know that what you are sharing is probably not uncommon for many single parents with cancer. Having spoken with other single parent cancer survivors, I can only say that you are right in that finding a way to cope with cancer on top of the demands of being a single parent can be overwhelming. An online community of support is a great idea!
You can also find support options through peer support programs offered by some organizations like ours. Our Lymphoma Support Network matches survivors based on diagnosis and treatment and other types preferences indicated on our questionnaire. Other organizations like Cancercare and Leukemia and Lymphoma Society have peer support programs as well.
Hope this information is helpfu!
Best,
Rosalie
Patient Services Associate
Lymphoma Research Foundation
Thanks Rosalie. I’m in Australia and am trying to find/establish a network here but the online community is a fantastic resource in lieu of real-life contact.
By the way, you have a beautiful name – it was actually my first choice for my daughter Alice’s name but I was talked out of it (it is also my grandmother’s middle name).
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billstewart posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 1 month, 1 week ago · View
I will do that Charles and thank you for the information, it is much appreciated. I don’t really care how far I have to travel, I just want the highest quality care.
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charles posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 1 month, 1 week ago · View
Nebraska certainly has the most experience of those 3 centers, is of very high quality, has an expertise in lymphoma, and close to home for you all of which are very important. Having said that, if you are so inclined, you may want to look at MDACC in Houston, Fred Hutch in Seattle, and Dana [...]
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billstewart posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 1 month, 1 week ago · View
My local oncologist suggested 3 places that are within a few hundred mile of where I live (I live in central Kentucky), Mayo Clinic, Cleveland Clinic and University of Nebraska. I asked him which one would he recommend and he suggested University of Nebraska because they have been doing stem cell transplants longer than the [...]
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charles posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 1 month, 1 week ago · View
Your hopes of beating this thing are quite justified. I am curious how you selected Nebraska for a stem cell transplant? There are several different approaches to using stem cell transplant that are quite different around the country.
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billstewart posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 1 month, 1 week ago · View
I was diagnosed with MCL in April of this year. While it is stage 4 I do have limited involvement and only about 2% in my bone marrow. My doctor has sent me to see a doctor in Nebraska for treatment options. I am currently undergoing HYPER CVAD (just finished the first round of part [...]
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lrf2010 posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 1 month, 3 weeks ago · View
For those of you who would like to know more about the research and the work being done by some of the leading experts in the field related to Mantle Cell Lymphoma (MCL), you can visit the Mantle Cell Consortium website at http://www.mantlecelllymphoma.org
Thanks!
Rosalie
Patient Services Associate
Lymphoma Research Foundation -
justme posted an update in the group Non-Hodgkin’s Lymphoma: 1 month, 3 weeks ago · View
Whoohoo!!! My July 9th PET scan is clear!!!
That is fantastic news! We are so happy for you and wish you all the best as you continue through your survivorship journey.
Thank you so much!
It’s so wonderful to have something to celebrate and everyday is more of a gift!
CONGRATULATIONS!
Thank you!
WhooHoo is right! That is WONDERFUL news!!
Thanks Tammy
Awesome! So happy for you and your family. Onward!!
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tammyd posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 1 month, 3 weeks ago · View
Welcome to Cancer Connect and congrats on being cancer free!! May each and every one of those check ups move you further and further away from the memory of it all
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rpfitzwater posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 1 month, 3 weeks ago · View
I was diagnosed with Mantle Cell Lymphoma in Dec 2007. It is a very scary thing to be told that you have cancer and in the beginning it seemed like a whirlwind. But I trusted my oncologist and what she told me. I had 6 months of hard chemo, but I am now cancer free. [...]
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lrf2010 posted on the forum topic Mantle Cell Lymphoma in the group Non-Hodgkin’s Lymphoma: 1 month, 3 weeks ago · View
Welcome and congratulations at being cancer free rpfitzwater! I hope that you find this site helpful as you continue through your survivorship journey.
Best,
Rosalie
Patient Services Associate
Lymphoma Research Foundation -
justme posted on the forum topic Recurrance? in the group Non-Hodgkin’s Lymphoma: 2 months ago · View
My PET scan is tomorrow….we’ll see how it goes. Thank you for your words of encouragement
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