The Leukemia & Lymphoma Society Blog

The Leukemia & Lymphoma Society Blog

4 Posts tagged with the nhl tag

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Christen Reilert was diagnosed with non-Hodgkin lymphoma (NHL) when she was just 27-years-old. She took some time out to answer our questions on what it meant for her to be diagnosed with cancer as a young adult, as well as the fertility issues she faced.

 

LLS: How did you find out that you had NHL?

Christen: I found out I had NHL when I started having trouble taking deep breaths. Every time I took a deep breath it hurt which prompted me to go to my doctor. Twice I was misdiagnosed with walking pneumonia, given antibiotics and sent on my way. Two months later the symptoms returned and I ended up going to the hospital where they did a chest x-ray and found a large mass in my chest. That was the 4th of July in 2002 when I was diagnosed with NHL.

 

LLS: That sounds frustrating. Can you describe how you handled the diagnosis, as well as how it affected your day to day life?

Christen: The news was a total shock, being 27-years-old and a two-year newlywed with my husband, Josh. I was devastated. After the shock, I decided I was going to do whatever it took to survive. At the time, I didn't want to know anything about the cancer, I just wanted to fight it. Every day I went in for my chemo treatments I had a smile on my face and I knew at that moment, I was a survivor. I went through six chemo treatments over an 18-week period and 18 days of radiation. I lost all of my hair on my body, got severe thrush*, became extremely fatigued and was out of work for seven months. Since that dreadful day of diagnosis, I look at every day as a gift. Every day I wake up, I thank God for letting me enjoy another day of life. There is nothing in life that be that bad. In my life, there are no bad hair days, no feeling sorry for myself, just living everyday as it comes.

 

LLS: Do you mind sharing if and how your diagnosis affected your plans to have children?

Christen: Just two months prior to my diagnosis, we had just started trying to have a family. I had always dreamed of becoming a mother and when I was told I had cancer, my dreams were shattered and put on hold. There was no definite answer if I'd ever be able to have children. I sought out professional advice from an infertility specialist in Manhattan. Josh and I traveled there by car and she told me I could freeze embryos but I'd have to wait until my next cycle when I ovulated again. Unfortunately my tumor was so aggressive I couldn't postpone chemotherapy and I was not able to freeze any embryos to preserve my fertility. Needless to say, I cried all the way home.

 

LLS: Was there anything you could try at that point?

Christen: My chances of becoming a mother were slim. I took a chance and the doctor put me on a birth control pill to suppress my period for the duration of chemo (which was 18 weeks as well as 18 days of radiation) in hopes the chemo would bypass my reproductive system. The chemo I endured was very aggressive and harsh, and basically prayer and hope was all that was going to ensure any sort of fertility.

 

I was very ecstatic when I found out I was pregnant in April of 2008. When I took that pregnancy test, I literally did a double take. All the prior tests were always negative and to get a positive result was just shocking. When the doctor confirmed my pregnancy with a blood test I didn't waste any time breaking the news to family and friends!

 

LLS: Congratulations!

Christen: Yes, on December 23rd, 2008, our miracle baby born. Our son, Jaden was born! My motto which I've been saying since I found out I was pregnant has been "CANCER SURVIVOR'S HAVE MIRACLES TOO". We are so blessed to have him. What more could a cancer survivor ask for?

 

LLS: How is your health now?

Christen: I am currently in remission and have been cancer free for the last seven years now.

 

LLS: We hear that you’re actively involved with The Leukemia & Lymphoma Society (LLS).

Christen: After I completed radiation in early 2003, I ended up calling LLS to become involved in fundraising because felt like I owed the world a big fat thanks! For everyone who helped me beat this disease, I felt like I had to give something back. So in 2003 I started doing the Light The Night Walk and formed my own team, Christy's "Cure"ators. I have been the team captain for the last six years and an honored patient hero for the last five years. Everyone who walks with Light The Night Walk has been following my story. Last year at Citibank Park I was speaking (as I do every year) and was able to announce my pregnancy. I unveiled my seven month pregnant belly in front of hundreds of people with a zip of my jacket and the crowd roared for me. It was so exhilarating. This year, I get to introduce my son Jaden to everyone at Citibank Park, I can't wait.

 

In addition to being a team captain and honored patient hero I also volunteer my time anywhere I can. I am also a First Connection Volunteer for those who are diagnosed with similar diagnosis and who are around my age - I am like a mentor to them.

 

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* ”Some people may develop a white, shiny coating or white patches on their tongue, inside of the cheeks or on the floor of the mouth. This symptom may indicate a yeast infection, also called ‘thrush’ or ‘oral candidiasis.’” From the free booklet, Understanding Drug Therapy and Managing Side Effects.

 

If you’re a young adult who has been diagnosed with blood cancer, you can give our Information Resource Center a call at (800) 955-4572 and someone will be able to help you or point you in the right direction.

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The Leukemia & Lymphoma Society (LLS) is proud to now offer live online chat for chronic myelogenous leukemia (CML) patients, which launches its first session this Tuesday, August 25. This live chat, called Living with CML, runs for two hours every Tuesday evening from 8:00 p.m. to 10:00 p.m. ET. Living with CML joins the long-running Living with NHL: Gaining a Sense of Balance chat, which runs every Monday and Wednesday evening from 8:00 p.m. to 10:00 p.m. ET.

 

Each chat session is hosted and run by an IRC Moderator, who is responsible for making sure that chat participants stay on topic and are respectful of each other and differing opinions. The purpose of each chat is to provide patients a safe place to discuss their stresses and triumphs through any aspect of their experience with CML or NHL.

 

Learn more about live online chat, and visit the registration page to sign up for either chat.

 

Not sure online chat is for you, but you still want to connect with other patients? Try out the LLS Blood Cancer Discussion Boards, an online forum devoted to the blood cancer patient and caregiver community.

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We have many resources in English, but in case you didn’t know we have resources that can be of help to people whose native language might not be English.

 

Free Materials

Available in Spanish (Español) and French (Français)

 

Free materials are available in Spanish (Español) - you can download a PDF or order a printed copy - and French (Français), but you can download a PDF only.  When you are on the www.LLS.org website look in the left-hand column and click on Patient Services, then Free Materials, then you will see Spanish Publications (Publicaciones españolas) and French Publications (Editions françaises).

 

 

Financial Assistance

Available in Spanish (Español)

 

Need financial assistance? Spanish-language speakers (las personas que hablan español) can download our Patient Financial Aid application in Spanish (Solicitud de ayuda económica para pacientes) as a PDF. There is also a handy step-by-step guide in Spanish (Cómo solicitar la inscripción en el programa de ayuda económica para pacientes) to help you fill out the application.

 

 

Free Newsletters

Available in Spanish (Español)

 

Visit the following pages in our National Education Programs section for access to our downloadable Spanish newsletters (boletines españoles) available as PDFs.

 

Can’t find what you need? Let us know here by leaving a comment or by contacting our Information Resource Center by calling (800) 955-4572 or filling out our online form.

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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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