just got diagnosed with diffuse large b-cell lymphoma

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Comilio2
Comilio2 Member Posts: 2
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I am still in shock don't know what to expect. I haven't been staged yet but don't really know what's infront of me and I am really scared. I'm 28.years old and there is so much on the internet who knows what to believe. Any advice would be great.

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  • jimwins
    jimwins Member Posts: 2,107
    #2
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    Welcome

    Hi Comilio.  I'm sorry you have to be here but you will find wonderful folks here for support and encouragement!  Please know that Lymphoma is very treatable and many are considered "curable" as is the case with Diffuse Large B Cell which is what I had.  I've been in remission now for almost two years - almost half way to the cure mark of 5 years!  You can read about my journey in the "about me section" of my profile (click on my picture/name).

    The Internet is wonderful but it can drive you crazy because there is outdated information and some "crack pot" stuff out there.  So take anything you find with a grain of salt.  The important thing is to have a good oncologist and medical team and always be ready to  get second or third opinions and be your own advocate.

    If you are not already on anti-anxiety medication, ask your doctor about it.  It will help keep the "worry monster" at bay and allow you to sleep better, etc.  I know this is a shock and all of your feelings/reactions are normal.  They have come a long way in treating cancer - especially lymphoma.  Hope is alive and well at this site!  You will find friends here and many with same/similar experiences as you.

    Positive attitude and humor are free weapons in this war - so use them to your advantage.   I know this is very scary but you will find strength you didn't know you have and will get through this.  Many folks here will respond soon.  Please know you are not alone.

    Big hugs and positive thoughts,

    Jim

     

  • scndshot
    scndshot Member Posts: 5
    #3
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    Hi Comilio2, long story but I

    Hi Comilio2, long story but I was eventually diagnosed with diffuse large b cell lymphoma last July.  First step was a bone marrow biopsy, a lumbar puncture and a PET Scan.  Bone marrow and lumbar were clear.  PET scan diagnosed me as a stage 4 with multiple locations the lymphoma was showing up.  I was immediately put on a 6-cycle over 18 weeks R-CHOP regimen.  Key to the chemo. is to keep the anti-nausea meds. in you at all times (Zofran, Ativan...).   My biggest side effect was from the Prednisone steroid which had me bouncing off the walls.  Other than some fatigue, chemo was long and arduous but manageable.  PET scan at the end of R-CHop showed some questionable activity in my mandible so I was sent off for 20 days radiation to the mandible...don't get me started on those side effects (radiation to the head basically).  Next PET Scan was 3 months later and I got an all clear and am feeling good.  I go for another PET Scan in a couple of weeks (every 3 months for a awhile).  Bottom line, keep your head down, stay positive and you can beat this.  You just have to be patient.

    Scndshot

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #4
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    jimwins said:

    Welcome

    Hi Comilio.  I'm sorry you have to be here but you will find wonderful folks here for support and encouragement!  Please know that Lymphoma is very treatable and many are considered "curable" as is the case with Diffuse Large B Cell which is what I had.  I've been in remission now for almost two years - almost half way to the cure mark of 5 years!  You can read about my journey in the "about me section" of my profile (click on my picture/name).

    The Internet is wonderful but it can drive you crazy because there is outdated information and some "crack pot" stuff out there.  So take anything you find with a grain of salt.  The important thing is to have a good oncologist and medical team and always be ready to  get second or third opinions and be your own advocate.

    If you are not already on anti-anxiety medication, ask your doctor about it.  It will help keep the "worry monster" at bay and allow you to sleep better, etc.  I know this is a shock and all of your feelings/reactions are normal.  They have come a long way in treating cancer - especially lymphoma.  Hope is alive and well at this site!  You will find friends here and many with same/similar experiences as you.

    Positive attitude and humor are free weapons in this war - so use them to your advantage.   I know this is very scary but you will find strength you didn't know you have and will get through this.  Many folks here will respond soon.  Please know you are not alone.

    Big hugs and positive thoughts,

    Jim

     

    LARGE B CELL

      I agree with what Jim said. Most of those websites are so outdate and can really confuse you.  Not going to write a lot because been having trouble with the site for the past few days. Will write more when they get it straightened out. John

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #5
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    Information

    Hello to you Comillo,

    I had Hodgkins type disease, not non-Hodgkins, and my medications were different from what you most likely will receive (most common for NHL is "r-chop," which some have mentioned here).

    But, you asked about "the internet."  I encourage you to AVOID any sites that are not mainstream or linked to a medical center or university. Some of the best (good) sites are places like the Mayo Clinic, Johns Hopkins University, WEB-MD, etc.

    There are thousands of wack-job sites that promise absurd miracle cures and alternatives, which have no scientific validity at all. As Jim wrote, trust your doctors, and use the highest-quality care you have access to.  Second opinions are good, especially if there is any uncertainty in exactly which strain of the disease you have, but you cannot get medical advice over the internet.

    Many, many good folks here have had "large-b" (it is one of the most common varieties), and they will share their experiences, and give emotional support, but that is not the same thing as medical direction.

    If you are not sure a site is sound and authoratative, STAY AWAY FROM IT.   For details regarding chemo drugs and common side-effects, I recommend www.chemocare.com, which is affiliated with an oncology medical center, and has as a spokesperson retired professional ice skater Scott Hamilton.

    The more you learn from your docs and share here, the more people can respond specifically to what you might expect. 

    Good luck to you,

    max

  • Shoopy
    Shoopy Member Posts: 210
    #6
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    Also recently diagnosed

    Comilio2, I was told I have "lymphoma" on May19th, 2013 and officially diagnosed with DLBCL Stage IV on May 24th, 2013.  I am 48yrs old and was in pretty good health.  It can really throw you for a loop!  I have no history of any cancer in my family.  Of course, the first questions I asked the oconologist were "How did I get this?", "Why did it happen?".  His response was unsettling, "We don't know what causes it or why you have it."

    So, here's what I've learned over the last 8 weeks:

    Don't freak out about the staging.  I completely freaked when I heard "Stage IV".  What I've learned is that different cancers have different stagings with different prognosises.  For DLBCL, Stage 3 is used when lymph nodes are impacted above and below the diaphram.  My PET scan showed a 1cmX1.5cm (dime size) mark on my lung (something that both the onconlogist and pulminologist think will go away with treatment).  However...because of that small PET light...I have to be classified as Stage IV.

    DLBCL is normally aggressive.  It certainly was for me.  I went from working out 2-3X a week...to unable to walk from couch to frig for a glass of water with 7-10 days. 

    The frustrating part is waiting for the pre-treatment stuff: PET scan, trim port installation, heart test, etc.

    My treatment plan is 6-8 treatments of R-CHOP every 3 weeks.  I have completed 2 treatments so far and feel great compare to 8 weeks ago.

    The treatment itself isn't bad in my opinion.  They have me on Prednisone for 4.5 days after.  A word of warning: read up on Prednisone.  Everyone reacts differently but I had a great feeling...almost false feeling that I was better than I really was.  I'm finding that once I stop taking the Prednisone...I have 2-3 days of feeling mentally crappy.  I have no been sick at all.  I am fighting a bit of fatigue which I suspect will get more difficult with every treatment.  Talk with your doctor...there are things you can do to help with this.  The Lunasta shot has given me mild bone pain...mainly in hips and upper arms.

    My blood counts were VERY low before my first treatment.  I ended up receiving a transfusion about 10 days after...again...it made a HUGE difference.

    So, anyway, the doctors are all happy because they can't feel any of my lymph nodes since the first treatment.  My biggest "pain" has been my spleen.  I was told it had become the size of a large grapefruit.  I needed hydrocondone to sleep at night and sometimes during the day.  Since my second treatment, it has dramatically shrunk and I no longer have pain with it.

    I know this is a lot of info...sort of a brain dump on my part (sorry for misspellings).  Let me know if you have any questions as you begin this ride.

    I will tell you this...it is amazing what faith, family, friends, prayer, positive attitude...and a ton of toxic drugs will do for a guy!

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