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Thread: DLBCL sufferer looking for encouragement :)

  1. #1

    DLBCL sufferer looking for encouragement :)

    Hello.
    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
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    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,

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

    Age 63
    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 Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  3. #3
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    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.
    john
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays in remission


    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
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    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
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    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
    www.caringbridge.org/visit/jeannelawson1

    "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
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    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
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    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 58
    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 on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    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
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    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 57
    1987 CIN 111. Cervix lasered, no further problems.

    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. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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    Out of all the things I have lost, I miss my mind the most.

  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
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    Thumbs up

    antthemanrees

    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?

    Cheers
    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

  11. #11
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    antthemanrees

    Sorry I missed your last post and the questions.

    Everybody's hair comes back differently but there is no relation to that and the success of the chemo.

    Yes if you get into remission on DLBCL then you have a very good chance of staying there. One of the problems with the published stats is that they pre-date the use of the 'R' in R-CHOP. That particular element has been a game-changer and the actual relapse stats will be much better than anything you can find on the net.

    Cheers
    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

  12. #12
    Administrator Top User ChemoMan's Avatar
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    Hi

    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?
    Yes and no. If you get to 3 years chances are you will get to 10. The big milestone is at 3 years because at this point the survival curve, after a big fall, starts to flatten out. At 3 years out you should have a big party I did it was awesome

    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?
    Hair loss is universal but very individual. I lost all of mine as well. I doubt it means anything to overall survival.
    I was scared that if my hair had started growing back on chemo, then my cancer had probably grown immune to R-CHOP lol.
    LOL indeed

    Cheers
    Age 58
    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 on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    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.

  13. #13
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    Quote Originally Posted by antthemanrees View Post
    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.
    I didn't lose all my hair half my facial hair grow as normal the other half didn't and my hair on my head didn't fully fall out until the 4 cycle but everyone is different in how or when or how much falls out

    any aggressive cancer has the ability to be cured specially people in the DLBCL group, its the way chemo works killing cells when they divide(multiply) the more aggressive it is the faster its multiplying the more effective the treatment and a higher chance to kill every last cancer cell, my doc said if I can make it to 2 years the chances of it coming make are very unlikely but if I make it to 5 she will shake my hand and say im cured.
    at the moment ill be happy to know its all worked like yourself but still have another week and half of waiting

    the noise does suck but ive put it to the back of my mind for now, I seam to get small sharp pains at what feels like lymph node sites and my biopsy sites(doc said this happens), small dull pains in the guts, back pain etc but its more than likely my body healing and guts slowly getting back to normal. haha well i hope so anyway. but from reading on sites like this one allot of people get the same pains sometimes up to months after being confirmed in remission so its best to put it in the back of your mind until you know

  14. #14
    Thank you for the posts. I went for a blood test today and it was fine, so all I have to do now is have chemo number 8 next week and then have a CT scan. I can not wait until it is all over! I asked my doctor if my half way scan was good, he just nodded, he is a man of few words lol. He told me before that what I had was curable, so now it is just time to get the last treatment out of the way and ignore the "noise". I feel much better now I have found this forum!

    Quote Originally Posted by Dad57 View Post
    antthemanrees

    Sorry I missed your last post and the questions.

    Everybody's hair comes back differently but there is no relation to that and the success of the chemo.

    Yes if you get into remission on DLBCL then you have a very good chance of staying there. One of the problems with the published stats is that they pre-date the use of the 'R' in R-CHOP. That particular element has been a game-changer and the actual relapse stats will be much better than anything you can find on the net.

    Cheers
    Yes I have heard Rituximab is "brilliant". I read on Cancer Research that is may lower the chance of Lymphoma coming back, which is great! I did not know most stats were pre-Rituximab though! This makes me feel so much better as the stats I have read before are good, but could of been better lol.

    My goal is to live until 60 at least, I do not see why Mr Lymphoma will stop me lol.

    P.S. I am from the UK.
    Last edited by antthemanrees; 10-10-2011 at 02:37 PM.

  15. #15
    Administrator Top User Kermica's Avatar
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    My goal is to live until 60 atleast
    antthemanrees - I have no clue why you chose 60 as a life goal. I know it looks like a lifetime away when you are twenty but why not go for 80 or beyond. As long as you have a modicum of health and your mobility, life is great, so why quit at sixty? You will get through thhis chapter in your life and should have every expectation of a long time going round the sun. You should reassess that goal, in my opinion.

    Good health,

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

    Age 63
    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 Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  16. #16
    Quote Originally Posted by Kermica View Post
    antthemanrees - I have no clue why you chose 60 as a life goal. I know it looks like a lifetime away when you are twenty but why not go for 80 or beyond. As long as you have a modicum of health and your mobility, life is great, so why quit at sixty? You will get through thhis chapter in your life and should have every expectation of a long time going round the sun. You should reassess that goal, in my opinion.

    Good health,

    kermica
    Thank you Kermica. A post like yours fills me with confidence!

  17. #17
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    Quote Originally Posted by Kermica View Post
    I have no clue why you chose 60 as a life goal.
    I'm with you on this one, Kermica. Note that in another thread CEB, who is around our age, referred to our cohort as "young middle aged." I like that.

    antthemanrees, sorry you had to go through this, but the chemo beating is almost over. When you start to bounce back from this last infusion, you'll know that this time the recovery is permanent. Shoot for 90, boss.
    Diagnosed at 57 years old on December 7 '09 with DLBCL, stage III, bulky
    Completed 8 cycles of R CHOP 21 May 24 '10
    Completed 18 sessions of radiation July 21 '10
    NED since May of '10

  18. #18
    Quote Originally Posted by schnauzer View Post
    I'm with you on this one, Kermica. Note that in another thread CEB, who is around our age, referred to our cohort as "young middle aged." I like that.

    antthemanrees, sorry you had to go through this, but the chemo beating is almost over. When you start to bounce back from this last infusion, you'll know that this time the recovery is permanent. Shoot for 90, boss.
    Thank you very much for the positive message!

    I have a question. My consultant does not say much, all he ever has told me is that the cancer I have is curable and that I would need 8 cycles of R-CHOP. The only other thing he has told me is that my cancer was in a lymph node in my upper tummy, and a small build up of cells in my liver and spleen. I have always assumed this was stage 4. But I have read on various websites that this could actually be stage 3, can somebody shine some light on it for me?

    Also I have decided that I am going to live to 100. I feel very healthy, I have put on 30lbs, I look healthy, no pain and no night sweats. Add these to a good half way scan and only being 20, and I have decided Mr DLBCL being cured is the only cards to be played.

  19. #19
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    this should help, not a doc but would suggest stage4 but in the end I was always told stage was not too important.

    Stage 4 The lymphoma has spread beyond the lymph nodes to other organs such as the bone marrow, liver or lungs.

    As well as giving each stage a number, doctors also use a letter code – either A or B – to show whether or not you have specific symptoms. Your doctor will ask you whether you have symptoms such as weight loss, fevers or night sweats. If you don’t have any of these symptoms, your illness will have the letter A next to the stage. If you have these symptoms, it will have the letter B next to the stage. A person with stage 2A NHL will have two or more lymph nodes affected on one side of the diaphragm, with no symptoms of weight loss, fevers or night sweats.

    Occasionally, lymphomas can occur at unusual sites outside the lymph nodes, for example in the stomach. This is called extranodal lymphoma and the stage will include the letter E (for extranodal).
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays in remission


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

  20. #20
    Quote Originally Posted by johnr View Post
    this should help, not a doc but would suggest stage4 but in the end I was always told stage was not too important.

    Stage 4 The lymphoma has spread beyond the lymph nodes to other organs such as the bone marrow, liver or lungs.

    As well as giving each stage a number, doctors also use a letter code – either A or B – to show whether or not you have specific symptoms. Your doctor will ask you whether you have symptoms such as weight loss, fevers or night sweats. If you don’t have any of these symptoms, your illness will have the letter A next to the stage. If you have these symptoms, it will have the letter B next to the stage. A person with stage 2A NHL will have two or more lymph nodes affected on one side of the diaphragm, with no symptoms of weight loss, fevers or night sweats.

    Occasionally, lymphomas can occur at unusual sites outside the lymph nodes, for example in the stomach. This is called extranodal lymphoma and the stage will include the letter E (for extranodal).
    Thank you for the reply johnr.

    I thought I was stage 4. I read before that when most people are diagnosed they are diagnosed in the advanced stages and only some people are diagnosed in the early stages. I have also browsed around a few forums and have seen many people with stage 4B DLBCL and they are all in remission now. Also finding this forum and seeing how many people get put in remission is very positive!

 
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