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Thread: DLBCL sufferer looking for encouragement :)

  1. #1

    DLBCL sufferer looking for encouragement :)

    I am a 20 year old male who had a form of Hodgkin's Disease that turned into DLBCL. My Hodgkin's Disease was under my right arm pit and was treated with 3 weeks of radiotherapy. The radiotherapy worked but inbetween diagnoses and treatment my HD mutated into Diffuse Large B Cell Lymphoma.

    The DLBCL was in a lymph node in my upper tummy and there was also a small build up of cells on my liver and spleen. I had symptoms like night sweats, pain and rapid weight loss.

    I am currently on R-CHOP. I am due my 8th and hopefully final treatment next week.

    My half way CT Scan showed that 80% to 90% of the Lymphoma had been killed. The consultant told me that all of the cancer maybe gone, but it was unclear if the remaining bits were scar tissue or still Lymphoma.

    Now treatment is coming to an end, I am getting a bit nervous as the security of treatment will soon be over. I have no symptoms anymore, I have put on 30lbs of good weight and I feel healthy.

    I am just looking for someone to give me some words of wisdom and stop the scary voices in my head

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    New York
    Hi there and welcome. The scary voices you are hearing are normal - we call them mental noise. I am not a DLBCL patient so will wait for others to chime in regarding your case. I will say that, from what I have read here by other members, you have every reason to expect that your treatment has been successful and you will be in remission when everything is said and done. That is a wonderful thing so focus on that instead of all the noise that the process has caused you to hear. Good luck with your final treatment and I wish you well.

    Good health,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 66
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.

    December 2017 - Biopsy of external iliax node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.

  3. #3
    Top User
    Join Date
    Mar 2010
    durham UK
    Hi firstly pop to this site and read some of the articles it will help yopu cope and understand your feelings at this stage, which are normal by the way ..... http://www.cancercounselling.org.uk

    Thats a good mid point result and if your original mass was large then its very likely that the will be scar tissue, at the mid point for me I achieved a 70% reduction and after 8 r-chop still had a mass left that turned out to be scar tissue and 2 yrs down the road I still have some residule scar tissue. So whilst you know it slikely to be good news you still prepare for bad news just in case.
    All of us have been where you are now and it will get better and you do get used to looking after yourself with your medical team in the background.
    So try not to worry to much and enjoy not having to have treatment and after the final one use it as a mini celebration and welcome to the site.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  4. #4
    Senior User jmarek's Avatar
    Join Date
    Apr 2011
    South Milwaukee, Wisconsin
    Hi and welcome Anthtemanreees,

    I'm a fellow DLBCL sufferer and am a few weeks out from my 8th R-CHOP. I have the same feeling about the care surrounding treatment as a feeling of security and have been dealing with the mental noise. The fact that the treatment was working so good at half point is a good sign. I think like Kermica said, we should try to focus as much as possible on the good things that come out of this and try to celebrate that a bit. Personally I think I will feel the best when I get my follow up results in November to have some feeling of this being behind me.

    As John has mentioned, I will also be seeking out some counseling for this as well to improve the quality of life after the anguish we go through. I've heard it compared as PTSD and it can certainly have its affect.

    Good luck on your last treatment!
    Age 40
    Stage 4 Non-Hodgkin s Large B Cell Lymphoma
    Diagnosed on March 30th 2011/Staged on April 6th

    R-CHOP treatments
    First treatment: April 12th
    Eighth treatment: September 8th
    Have been in Remission since 9/2011

    "Yesterday is history, tomorrow is a mystery, and today is a gift, that's why its called the present"
    Dr. Wayne Dyer

  5. #5
    Top User shakifan's Avatar
    Join Date
    Feb 2011
    Phoenix, AZ
    Hello and welcome! Just finished 8 CHOP here and I have the same feeling. I'm on to auto SCT in about 3 weeks now, so I feel a little more "protected" , but it is difficult coming to the end of treatment. Hang in there, there are many people here to help you through.
    43 years old
    Peripheral T-Cell Lymphoma, NOS 4B 4/21/2011
    CHOP-21 to begin 4/26/2011 6-8 cycles
    ICE X 2, auto SCT 12/6/11

    "Y un dia despues de la tormenta, cuando menos piensas sale el sol"-Shakira
    "One day after the storm, when you least expect it the sun will come out."

  6. #6
    Regular User
    Join Date
    Sep 2011
    ACT, Australia
    I dont have DLBCL but a "rare" subset which is PMBCL just as aggressive and just a treatable as DLBCL. I finished my R-CHOP 14 which is only 6 cycles almost 2 weeks ago.

    I was the same got to my 5 cycle and all the worries started all the mental noise all the what ifs. even tho the doctor was telling me everything has gone like a dream, i knew myself i had no more symptoms but the worry still got the better of me. amazingly after reading peoples stories on here something clicked an i was relaxed. Unlike yourself i didnt have a mid way scan the 14 days between R-CHOP makes it too hard so im still uncertain as to how much has been killed.

    just look at what your saying you have put on weight not losing it and you don't have any symptoms, It sounds really positive the complete opposite to if the lymphoma was growing. so I would be positive about it

  7. #7
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    South Australia
    Blog Entries
    Hi antthemanrees

    My half way CT Scan showed that 80% to 90% of the Lymphoma had been killed. The consultant told me that all of the cancer maybe gone, but it was unclear if the remaining bits were scar tissue or still Lymphoma.
    This is what nearly always happens, it certainly happened to me and many others here and is par for the course. Don't panic you will achieve remission, the trick is staying there.

    As for the mental noise, I don't think that will ever stop, you may get to the point where is is like soft muzak in the background but I doubt it will ever go away.

    Cheers and good luck
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  8. #8
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    NSW Australia
    Hi there. I also still had something still there which turned out to be scar tissue.
    After treatment ends we can feel so cast adrift..what now? All effort has gone into fighting this beast and we feel like a boat that has lost its paddles.

    Even though I knew this I was so surprised when it happened to me. It was a horrible feeling but it subsided.

    After treatment we have to get used to our "new" normal. We can feel that any health blip is the cancer returning and most of the time it is not.

    The noise in our heads is always there but it ebbs and flows depending on how we are feeling.

    It rises with scan or check up time then settles back in the background with most of us. We call it scanziety.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  9. #9
    Thank you all for replying. I feel so much better after reading all your posts.

    I am confident I will be put into remission, just sometimes the "noise" gets the better of me.

    I have a few questions though, I know the answer, I just want someone else to tell me the answer as it always sounds better coming from somebody else lol.

    I read before that when DLBCL is put into a complete remission, most people stay there, i.e. their disease will never come back. Is this true?

    Also, after my first chemo 99% of my hair fell out, somewhere around half way it started growing back. Right now I have a head full of baby like hair. Is this normal? I was scared that if my hair had started growing back on chemo, then my cancer had probably grown immune to R-CHOP lol.

  10. #10
    Senior User
    Join Date
    Dec 2009
    United Kingdom

    Thumbs up


    Hi and welcome.

    You are the same age as our Son Tom when he was diagnosed with DLBCL and seem to have had your disease in a similar place.

    He too had R-CHOP and is now in complete remission 2 years on from his diagnosis. He is a college athlete and now back to full health. So hopefully you can take plenty of comfort from that. You can read his story 'No Matter How Tough it Looks' and see his diagnosis and progression from 2009.

    You will hear lots of 'noises' over the coming weeks and months and there may be a scare or two. But if you have responded well to treatment then you can be very confident. Whereabouts in the World are you?

    21 yr old male (Our Son)
    Diffuse Large B-Cell Non Hodgkins Lymphoma
    Stage 1A Mediastinal Mass 8cm x 7cm
    Diagnosed October 09
    Started course of 6 x R-CHOP 14 in Nov 09
    Course complete Jan 2010
    Remission declared March 4th 2010
    Continues in remission March 2014


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