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NWR: ISO of a needle in a haystack

I've had a very trying last two weeks. While on business travel, I got sick, ended up in the hospital, and was diagnosed with cancer. On top of all of that, my cancer caused some issues with my heart, so I had to have open heart surgery. I've been at home for several days recovering, I'm feeling well, and the cancer treatment will start next week. 

So, on to my request- the cancer I was diagnosed with is called primary mediastinal non-hodgkin's large B cell lymphoma. It accounts for only 2% of all lymphoma cases and typically occurs in women in their 30s. So, what better place to find a large group of women in their 30s?! Since there are so few cases of this, I was hoping to find someone out there who has been diagnosed, treated, and totally slayed this cancer. Or maybe knows someone who has been through this and that person doesn't mind sharing their story with me. Though this cancer is highly curable, I'm being greedy and just want a little more hope! So, whether on this post or via PM, if there is anyone out there, I plan on beating this thing with everything I have and hope you have too!!!!

TIA! :)

 







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Re: NWR: ISO of a needle in a haystack

  • phiraphira member
    5000 Comments 500 Love Its Second Anniversary 5 Answers
    Oh goodness!! Now I get why you didn't want to explain your absence a while back. I am so glad that your surgery was successful, that your cancer is highly treatable, and that you're feeling well.

    I'm not one of the needles in the haystack you're looking for, but I'm a cancer biologist. I don't study any lymphomas, but if you want any help with some scientific info, I can translate it as best I can!

    Get some rest!!
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  • I know nothing of this cancer, but I will keep you in my thoughts. Best of luck in your treatment. 

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  • Oh my God. I am so sorry. I don't have any help or advice, but I am praying for you.
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    I'm gonna go with 'not my circus, not my monkeys.'
  • Oh Jells, what a terrible ordeal!  So glad you are recovering well and you're ready to kick some cancer ass.

    I don't have any experience to share with you.  But I will send lots of positive thoughts, vibes, and prayers your way.  
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    "I'm not a rude bitch.  I'm ten rude bitches in a large coat."

  • I have no experience with this particular form of cancer, but I do have lots of hugs, wine, and encouragement for you while you kick its ass!
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  • That really sucks! So sorry to hear. Don't have any info, just internet hugs!
  • Thanks everyone! I am very optimistic and I realize finding someone will be super tough. Just being able to vent on here and have some virtual wine will be great!

     







  • Sadly, that's what my mother had. She fought for years, but never recovered fully and it eventually won.

    HOWEVER - With what is known now, there's a better picture to say that she had some other issues involved. Her siblings were all riddled with odd cancers or ones that didn't follow norms. They grew up in ag area Loisiana and constantly played in fields right after or even during chemical treatments. Cancer was not common in their family before them, it's almost nil in the Canadian side, French part had nothing but they have all died so I can't get more info, US kids are healthy. None of us show any known genetic markers. So, reality is more likely the chemical exposure is why she developed cancer that was not curable when that cancer has good success rates.

    I wish I had better news.
  • Ask your oncologist about support groups in your area.  The last thing you need is a pity party, but it might help for you to talk to others with the same form of cancer.
    I have survived both cervical cancer (caught early) and breast cancer (caught late).  Life is good.  Best wishes.  T & P.
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  • I don't know anyone who had this exact type of cancer but my aunt and a different kind of lymphoma. I know what helped her get through it was to know that there were going to be terrible days ahead, but also good ones too. She found that having a strong support system in her family and friends helped her to get through the days when she felt really sick and tired from the treatments. Stay strong girl, and kick some cancer ass! 

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  • lc07lc07 member
    Tenth Anniversary 2500 Comments 500 Love Its 5 Answers
    I do not have any experience with this disease - just wanted to add my thoughts and love and good vibes. I am so excited to feel the positive energy from your post! It was clearly evident and it is my sincere belief that it will serve you as you are on this journey. continue to let us know how we can help buoy you! 
  • I don't have any experience with that cancer. I am just so sorry you are dealing with this! You will be in my thoughts.
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  • MobKazMobKaz member
    Knottie Warrior 5000 Comments 500 Love Its 5 Answers
    I'm sorry to hear this.  Prayers are being said for your intention.  Perhaps @RajahBFMD might have some insights as to how to connect with other people with the same diagnosis.
  • I'm so sorry to hear this. 

    The only kinds of cancer I've dealt with has been in dogs.  Though it's TOTALLY different, when it came to my dog, we did both 'traditional' and 'holistic' and it really did seem to help her with what I was trying to accomplish.

    I see that on the American Cancer Society page there's a section for 'Find Support and Treatment'; perhaps that would be a place to look?


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  • Holy crap. I'm so sorry lady, what an ordeal.

    My friend's mom had non-Hodgkins lymphoma, although I don't know the type more specifically than that. She kicked its ass and laughed in its face.

    Another friend had some super rare, not very curable type of leukemia, that almost never strikes men his age... and he kicked its ass too.

    So no direct experience with that particular type, that I know of, but I see lots of ass-kicking around. Keep your chin up!

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  • These days, when caught early, cancer is super survivable. My grandma has survived four rounds of cancer and is still walking around her 29 acres happy as a clam. I had a cancer scare a few years ago, and except for a scar it doesn't even affect me anymore.

    You can do it! Cheering for you and sending happy thoughts and prayers your way.
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  • I'm so sorry to hear keeping you in my thoughts, though unfortunately I know no one with that type of cancer...

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  • Good for you girl. You show that cancer who's boss!! You can do it! :)
  • You've got this Jells! You are a rock star & an inspiration!
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  • you are in my thoughts, and you can totally kick cancer ass! sending you hugs and ALL the wine!
  • edited May 2014
    Thanks everyone!

    I've been searching online and am working with groups from my employer and where I will be getting treated. This is all still so new, but figured I'd try here since most people IRL don't know anything yet and because of the concentration of women that are around my age. The few people IRL life who do know have been walking on egg shells around me and it's driving me mad!!! LOL I know it's out of love and concern, but I want positivity not pity.

     







  • Oh my gosh, Jells. I don't know anyone that's had that type of cancer. But I'm saying prayers for you and I know you will kick cancer's ass! 
  • I know nothing useful but sending lots of happy thoughts your way!
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  • NYCMercedesNYCMercedes member
    Sixth Anniversary 2500 Comments 500 Love Its 5 Answers
    edited May 2014
    Jells, my prayers are with you. My cousin's wife was diagnosed with this right after she had her miracle baby after years of fertility treatments. That was 34 years ago! She's had two relapses since, which her doctors said originally was possible. After the first relapse she had a bone marrow transplant which held her for almost 20 years. The second relapse was six years ago and she had chemo. I remember her celebrating her five year anni last year. She's 70 now and has always been very optimistic about her life and health. She has always called it living with cancer and has taken each recurrence as just another little bump in the road in her long and happy and full life. God bless you.
  • doeydodoeydo member
    Seventh Anniversary 5000 Comments 500 Love Its 5 Answers
    I think you could try a support group or a councilor: http://www.cancer.org/treatment/supportprogramsservices/index

    I hope that all goes well with your recovery from surgery and your treatments.
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  • I had been wondering where you had been. Cancer is a nasty disease but I will be praying for you!

    My friend had non-Hodgkins lymphoma and kicked its' butt! She said what helped her the most through the chemo and treatments was her faith and belief that she was put in that situation for a reason. She had amazing support systems through family, friends and her boyfriend. You sound like you are keeping up your head and ready to fight this battle and I'll be rooting for you.

  • daria24daria24 member
    2500 Comments 500 Love Its Third Anniversary First Answer
    I would contact your local Leukemia & Lymphoma Society. I have a friend who works in their Central Florida branch. They have all kinds of patient support, and can help you connect to others with your form. 

    Virtual hugs for you!
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  • I am so sorry! Sending you lots of positive thoughts hugs and virtual wine as you recover and look at next steps

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  • Hey Jells, we missed you! Sending you lots of prayers and good vibes - I know you'll beat this!
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  • Sending you tons of love and positive energy. (((Jells)))
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