Diffuse Large B cell Lymphoma-Non-Hodgkins is diagnosis

24

Comments

  • Bill1958
    Bill1958 Member Posts: 67
    Keepin it positive!

    Thanks Karen and that is great your father responded well to treatment!  Yes, Amarie121, I play my guitar as your son does and it works for sure!  I appreciate your words too!  

  • DJS628
    DJS628 Member Posts: 77
    Good Luck!

    Hi Bill,

    You must have been born in 1958?  I was born in 1959!  Just wanted to say "good luck" with your treatments!  Try to keep a positive attitude and take one day at a time.  Neat you can play the guitar and you had the energy to play for 4 hours!

    I also had diffuse large b-cell lymphoma.  Luckily, caught in stage one.  But sadly, it came back last summer, so I ended up getting more R-Chop chemotherapy last summer, then getting intensive chemotherapy and a stem cell transplant in Jan. of this year.

    Treatment isn't a "piece of cake," but you can do it!

     

    Keep us up-dated on your progress.  We're fighting right along side of you!

     

    ---DJS628

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member

    Thanks

    I so appreciate your thoughts here, Sharon. 

    I was speaking to an electrical contractor from a power company once many decades ago about my having to change out a ruptured capacitor filled with PCB while in the Navy (PCB was once regarded as highly carcinogenic, and was banned from use in the US in 1979).  He said, "Come on !  I used to work at a plant that manufactured telephone pole transformers, and we would wade through liquid PCB ankel deep in rubber boots, and I never heard of a coworker getting cancer !"  I felt a  bit relieved, but by all means, everyone avoid the stuff.....

    Some claim high voltage power lines are dangerous -- never proven.  People were scared to death of microwaves for years.  Some people won' use a cell phone... My mother-in-law won't use a cell phone, but uses a cordless landline all the time !!  I have contained myself, and will not tell her that a cordless phone undoubtedly produces more wattage than a cell phone.    You mentioned smelling jet fuel, but people who refuel jets for a living get no more Lymphoma than average.   The same with men who drive oil tanker trucks.  I can remember when educated people popularly believed that if you ate an egg you were about to fall over dead with a coronary, but today, eggs are touted as a great food. Nuclear submarine personnel get cancer rates no higher than average (this is extensively well documented).  The list is endless. If a person seriously wanted to dramatically increase their chances of living longer, what they would do is no longer ride in an automobile.

    I read a study about 3 years ago that said the low level vibrations in trucks cause truck drivers to have more prostate cancer than other men  (everyone should play it safe, and buy a Lincoln or Mercedes I guess !). I have quoted this here before, but the brilliant George Carlin, in a spoof on the "cancer causes" tendency, pretended to be a news reporter once, and said:

    "Scientists have now discovered that saliva causes stomach cancer, but only when swalled in small amounts, over many years." 

    About right.  Testosterone feeds prostate cancer (but does not necessarily cause it), and estrogen feeds breast cancer. What ya gonna do ?    My neighbor a year before I got HL came down with Stage 4 NHL.  I moved across town, and my new neighbor came down with Stage 4 NHL also.  Maybe someone will hire a lawyer and claim that I am a source ? 

    The body defends itself.  Hope for the best, and give thanks.  This stuff is mostly random and not understood today is my conclusion, and what the best researchers are currently writing.

    max

    Worse by the day....

    A judge in Los Angeles yesterday issued a ruling that ALL COFFEE carry warnings in California that it is a carcinogen. The judge did not say that it was a proven carcinogen, but rather that it had not proven that it is NOT a carcinogen -- an impossible task, regarding any substance.  He could have ruled the same way against pristine mountain water.  Clean mountain air could be ruled a carcinogen, by his criteria.

    Undoubtedly will be appealed.  Coffee is one of the oldest beverages in human history, and is mostly regarded as very healthy, especially for the CNS, warding off Parkinson's and similiar diseases.

    Somewhat related: groups have been claiming for years that secondhand smoke "kills 50,000 in the US." I heard a talk show host issue a challange to this some time ago.  He challanged ANYONE, ANYWHERE in the US to produce a single death certificate that listed the cause of death as "Secondhand smoke."  No one ever has, because no such death certificate exists.  Has anyone here ever been to the funeral of a person who, tragically, "died of secondhand smoke?"

     

    max

    max

  • Bill1958
    Bill1958 Member Posts: 67
    edited March 2018 #25
    Keep going forward

    Yep!   I was born in '58 DJS628.  I plan on these treatments giving more more life and better quality of life.  I have really enjoyed my life and I have done so many things that I enjoy that I am satisfied tuit!  Before Lyphoma life was pretty much a "piece of cake", now the cake needs some frosting and an addded touch of sugar to enjoy.  But I love existance and really don't want to give it up.  

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    edited March 2018 #26
    Best of luck!.

    i was raised around musicians in Tennessee but never played. My family would have front porch jams and I would be out in the woods catching snakes and frogs. I love good guitar music. Its universal. I remember when I was young and heard the John Sebastian song “Nashville Cats” and how shocked I was to learn he was born and raised in Greenwich Village. The line “Up north no one would buy this stuff but I said I will” says it all. It spans cultures and divides. He played at Woodstock, in Nashville and liked everyone! His band split to form the original “Lovin’ Spoonful” and the “Mamas and Papas”. Keep playing! Music enriches our lives.

    Good luck with the lymphoma. I just finished my first 4-day cycle. Five more to go.

  • lindary
    lindary Member Posts: 711 Member

    Worse by the day....

    A judge in Los Angeles yesterday issued a ruling that ALL COFFEE carry warnings in California that it is a carcinogen. The judge did not say that it was a proven carcinogen, but rather that it had not proven that it is NOT a carcinogen -- an impossible task, regarding any substance.  He could have ruled the same way against pristine mountain water.  Clean mountain air could be ruled a carcinogen, by his criteria.

    Undoubtedly will be appealed.  Coffee is one of the oldest beverages in human history, and is mostly regarded as very healthy, especially for the CNS, warding off Parkinson's and similiar diseases.

    Somewhat related: groups have been claiming for years that secondhand smoke "kills 50,000 in the US." I heard a talk show host issue a challange to this some time ago.  He challanged ANYONE, ANYWHERE in the US to produce a single death certificate that listed the cause of death as "Secondhand smoke."  No one ever has, because no such death certificate exists.  Has anyone here ever been to the funeral of a person who, tragically, "died of secondhand smoke?"

     

    max

    max

    Second Hand smoke

    Max, I agree with what you said about second hand smoke and death. 

    I will add that I did know someone who was told by her Dr to stop smoking because her lungs were showing the effect if it. She told the Dr she never smoked. Turns out she was going to clubs a lot with her friends. This was back when people smoked where ever they wanted to so the club was filled with cigarette smoke and she was breathing it in. She had to stop going clubing.

  • DJS628
    DJS628 Member Posts: 77
    More Frosting!

    Hi Bill,

    Sorry I didn't see your reply until now.  I liked that analogy:  your life needs a little more frosting or sugar to help enjoy it more.  Keep up the positive attitude; it really helps. 

    I hope you're tolerating the treatments ok so far? 

     

    Keep playing the music!  And don't give up! You have us rooting for you!

     

    ---DJS628

     

  • Bill1958
    Bill1958 Member Posts: 67
    Fever and almost zero white blood cell count

    5 days ago I found myself with a low grade fever and blood test revealed very low WBC count.  I ended up in the hospital for 4 days until the WBC count came up.  The bed in the hosipatal was by far the worse part of the ordeal.  This Monday I go in for my 2nd round of RCHOP.  Life is love and Love is Life.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Bill1958 said:

    Keep going forward

    Yep!   I was born in '58 DJS628.  I plan on these treatments giving more more life and better quality of life.  I have really enjoyed my life and I have done so many things that I enjoy that I am satisfied tuit!  Before Lyphoma life was pretty much a "piece of cake", now the cake needs some frosting and an addded touch of sugar to enjoy.  But I love existance and really don't want to give it up.  

    A little

    Bill,

    I was born in Murfreesboro, just southeast of Nashville. But I mostly was raised and grew up in Charleston (SC).

    I took lessons and played guitar for several years, but gave it up for so long I no longer have any ability.  Acoustic and electric.  For years I tried to find the model guitar my dad bought us in around 1966, but had no luck until a few weeks ago. It was a Silvertone 1488, a beautiful piece. Three chromed soapbar pickups.  Back then Silvertone was the "Sears" brand, but this was NOT a starter guitar.   Almost "Gretsch" in beauty.... An extremely clear tone, Tele-like, if I recall correrctly.

    I am currently considering buying a bass and starting that, since I feel my level of neuropathy will not allow me to re-learn guitar (given only 4 strings widely-spaced on a bass).  Maybe it will happen, maybe not.  But, some say a bass is harder to learn than a guitar anyway.  Listen to David Allen Coe's classic The RideLearning music, like fighting cancer, is a long hard ride. 

    Pulling for you,

    max

  • catwink22
    catwink22 Member Posts: 281
    Bill1958 said:

    Thanks everybody: Good luck to you, to them and to me!

    As I prepare to make the 3 hour drive for treatments, I wish to say good luck to all.  Life is love and love is life. 

    PS:  I will be on here again soon as I will be needing to talk to help ease my worried mind!

    Spinal Treatments

    Hi Bill,

    I had 8 of the spinal chemos (intrathecal aka I.T.). Methotrexate for 4 and Cytarabine for 4.  I was given a fentanyl cocktail before the procedure and it was over in about 4 minutes. Not sure where you're from, but I was told to drink a Mountain Dew soda (pop) after to help prevent the headache too.

    Cat

  • catwink22
    catwink22 Member Posts: 281
    edited April 2018 #32
    Low WBC

    I was hospitilized after my last 3 treatments for low WBC.  The important number is your neutrophil count, those are the infection fighting white cells.  If those are low you cannot fight infections, that's why they hold you prisoner in the hospital.

    Best to you!  Hope it gets better soon!

    Cat

  • smork
    smork Member Posts: 2
    Indolent non hodgkins lymphoma with bone marrow and spleen invol

    Anyone out there with a similar diagnosis?  What was the preferred treatment regimen?  Did it work.  If you are in remission, how long ?  What about side effects?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    smork said:

    Indolent non hodgkins lymphoma with bone marrow and spleen invol

    Anyone out there with a similar diagnosis?  What was the preferred treatment regimen?  Did it work.  If you are in remission, how long ?  What about side effects?

    Welcome

    Welcome to you smork.

    It will be fairer to you if you start your own "thread".  The're free !

    By "indolent NHL" I suspect you mean Follicular, but it will be helpful if you specify the exact strain. Your scenario sounds pretty common, and there will be lots of folks here who have travelled your path.

    max

  • Bill1958
    Bill1958 Member Posts: 67
    Hello everybody

    I made another gig.  I really felt good the entire gig, but I am not feeling good right now.   It's like my heads in a fog and nasuea.  Going to get blood work right now and the 23rd I get a PetScan and Cat Scan as the Oncoligist wants to see how I am doing with my stage 4 lyphoma!  I feel like the tumors have shrunk and besides today, I have felt pretty good.  Love is Life and Life is Love!

  • Evarista
    Evarista Member Posts: 325 Member
    Bill1958 said:

    Hello everybody

    I made another gig.  I really felt good the entire gig, but I am not feeling good right now.   It's like my heads in a fog and nasuea.  Going to get blood work right now and the 23rd I get a PetScan and Cat Scan as the Oncoligist wants to see how I am doing with my stage 4 lyphoma!  I feel like the tumors have shrunk and besides today, I have felt pretty good.  Love is Life and Life is Love!

    Just curious

    Hi Bill, sorry to hear that you are having another rough patch.  But I am curious as to whether your doctors gave you any advice about going out in public, particuarly to crowded places?  I ask because I was strongly cautioned against doing so. As I recall, you did mention having a very low white count after your first treatment and ended up with fever & hospitalization. Be well.

  • AaronW
    AaronW Member Posts: 45
    Bill1958 said:

    Hello everybody

    I made another gig.  I really felt good the entire gig, but I am not feeling good right now.   It's like my heads in a fog and nasuea.  Going to get blood work right now and the 23rd I get a PetScan and Cat Scan as the Oncoligist wants to see how I am doing with my stage 4 lyphoma!  I feel like the tumors have shrunk and besides today, I have felt pretty good.  Love is Life and Life is Love!

    Hi Bill

    My second R-CHOP infusion is this Wednesday. Zofran helped me with nausea for about 3-4 days until it subsided for what it is worth. I hope you feel better soon.

  • Bill1958
    Bill1958 Member Posts: 67
    Thanks AaronW

    Thanks Aaron, the nasuea seems to fade in about 3 days for me after I end taking PREDISONE.  Evarista,  I and my doctors think it is OK to play music if I am feeling "up to it".  I believe it is more dangerous to go to the hospital for blood work than it is to play in the clubs we play in.  Why?  Because at least 50% of those at the hospital are sick and only some may be sick at the club.  I may pay for it but with stage 4 cancer, I am going to do what I like(love) regarless of the chances of getting sick.  Hey you only live once .  This is how my spirit works and I can't stop that!

  • Scubamom for two
    Scubamom for two Member Posts: 27
    Bill1958 said:

    Thanks AaronW

    Thanks Aaron, the nasuea seems to fade in about 3 days for me after I end taking PREDISONE.  Evarista,  I and my doctors think it is OK to play music if I am feeling "up to it".  I believe it is more dangerous to go to the hospital for blood work than it is to play in the clubs we play in.  Why?  Because at least 50% of those at the hospital are sick and only some may be sick at the club.  I may pay for it but with stage 4 cancer, I am going to do what I like(love) regarless of the chances of getting sick.  Hey you only live once .  This is how my spirit works and I can't stop that!

    Hi Bill,

    Hi Bill,

    I too was diagnosed with advanced DLBCL.  Mine probably started as Follicular and transformed.  My journey started with pain in my right shoulder that we thought was a rotator cuff injury.  PT only helped intermittenly and my insurance co. eventually approved an MRI of my shoulder.  The scan confirmed the cancer started in my right shoulder and by the time of correct diagnosis last August, it had also taken over my left iliac crest and found it's way to parts of my back, my skull, and both femurs.  To make a long story short, I completed 8 rounds of chemo (6 of them R-EPOCH,which is similar to your treatment, just one additional chemo; 2 rounds of High Dose Methotrexate as a prophylactic measure, and 12 IT chemo infusions-about half were Methotrexate and the other half were Cytarabine.  After my 2nd round of R-EPOCH, my scans were showing very little evidence of the Cancer.  After I completed all of the above treatments, I was declared in Remission and as I write this I have just had my first quarterly post-remission appt. and after getting yet another PET-CT, Brain MRI, and labwork done, I am still in remission!  Getting through all the treatments was the hardest thing I have ever done and I am not a sissy by any definition.  But, it is doable.  I am still working on figuring out my new "normal," but I have been back at work full-time for about 6 weeks now.  I would suggest that you make sure to get enough rest, but also try to keep as active as you can.  My treatments were done over 5 day hospitalizations as that is how they usually administer R-EPOCH, but I still walked at least 1-mile or usually more each day if I could during the hospital stays, even when I felt crappy. 

    That is great news about your CNS fluid being negative.  Mine also was each of the 12 times they tested it.  My team at MD Anderson (one of the best in the country) did tell me that there are cases where the Lymphoma gets into the brain even though the CNS fluid tests negative and vice versa.  There was some evidence in my case that the Lymphoma was possibly near my Cerebellum and possibly another spot deep in the left caudate nucleus, but they could not biopsy to confirm and instead we treated it aggressivly and on the later scans they did not see it anymore, which suggested it was probably Lymphoma.  Anyway, I tell you all of this not to worry you, but instead to encourage you to remain vigilant and consider aggressive treatment for this very aggressive cancer if you have the option.  Although it was discouraging to have to do the IT infusions and the 2 additional rounds at the end of High Dose Methotrexate, I am so glad I did because the possible alternative would be much worse.  My team says I will need to have more intensive surveillance due to the very aggressive nature of DLBCL, but considering how fast it grew and damaged my bones, I am glad that we will monitor every three months.  Best of luck to you in your current battle and journey!  Although I know each of us has our own individual experience, if you have any questions along the way, please don't hesitate to ask.

  • Brlennon812
    Brlennon812 Member Posts: 6
    Car T Cell Therapy

    Hi everyone,

    My mom (61 years old) was recently diagnosed with DLBCL stage 4 and has undergoed 5 lines of chemo. Since it is so aggressive, she is no longer a candidate for a stem cell transplant. We are going to Dana Farber in Boston next week to talk about Car T cell therapy. Insurance is becoming a challenge and the longer we wait the more the cancer advances. My mom is 108 lbs with a lot of pain in her hips legs and back. Getting her to eat is difficult and now she is scared for what comes next. Does anyone have any experience with Car T cell therapy? 

  • Bill1958
    Bill1958 Member Posts: 67
    Pet Scan and cat scan good

    My scans have shown, after two Rchop treatments, a 90% remisssion.  They have one spot on my lung that scaned hot but they think it is not cancer.  Otherwise it would be 100% remisssion.  I have 3 more treatments to do and we are really happy that it is going so good.  Thanks everyone for your support in this.