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Diffuse Large B cell Lymphoma-Non-Hodgkins is diagnosis

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

Well after a month of head and neck cancer specialists trying to ID the cancer they found, I am told that it is Lymphoma B cell.  I don't know if it's HL or NHL, what  stage it is or much of anything that helps us find solid hope.  I do know that I have an appoitment with a Doctor that specialises in lyphoma at The Roswell Cancer Institute in Buffalo, NY.   this monday.  The symptoms were a large mass in my neck(about 5 - 7 cm) but I really felt good and was eating and excercising alot until the headaches, stomach aches, mid back aches and the left shoulder aches started about 3 weeks ago and from there the doctors really worked with us to find out what is wrong.  The pain pills work but they are constipating.   I'm 58 years old and a man that loves his family, friends and the entire earth(especially wildlife and wetlands and the like and playing music).  My daughter and wife are supporting me in this 100 percent and that makes it so much easier.  Honestly we are all scared and have done some Dr Goggling.  There is so much information on lyphoma that itis just more confusing to try and learn anything at this point.  

PS.  THis CSN network is my favorite way to vent and learn and hopefully help others in some way over all this cancer monster that is attacking us!

Evarista
Posts: 265
Joined: May 2017

Hi Bill, glad you found this forum and please feel free to vent as needed! Just a word about getting your diagnosis and staging sorted (please excuse me if you know this already).

It sounds as though you have at least had a biopsy, correct?  From that, they first look to see what kind of cell may be involved.  Is it a lymphocyte or some other cell type?  If it is a lymphocyte, is it a T-lymphocyte or a B-lymphocyte   So, you know so far that yours is a B-lymphocyte.  For Hodgkins, there is often a special kind of cell (Reed-Sternberg cell) seen by microscopic examination.  Your doctor did not mention seeing those, which could mean you have a non-Hodgkins lymphoma.  But it could also mean he just didn't mention it or that none were found (there are forms of Hodgkins without the R-S cells).  So.  Now you need to wait for the more complex testing that will be done on your biopsy sample.  That may take a week or two, especially if they need to send it to a more sophisticated Pathology lab.

For staging, you will most likely get some kind of imaging, such as a CT scan.  That, together with the analysis of your biopsy tissue, will guide your doctors to a more precise diagnosis and treatment plan.  For now, try to stay as comfortable as you can, rest, eat well, and stay ahead of that constipation!  We've all been where you are...Waiting and scared.  But we are still here.  Please let us know what you learn as you move forward.  

po18guy
Posts: 1005
Joined: Nov 2011

"B-Cell Lymphoma" can describe any one of dozens of lymphomas, including Hodgkin's, which is normally also of B-Cell origin. Having said that, the sub-type will provide much more information. As to staging, do not worry about that. Really. Staging in lymphoma (think: liquid cancer) is relatively unimportant, as it is a cancer that routinely circulates in your lymphatic system. Staging serves mostly to direct treatment. Many lymphomas are found at late stage and this does not correlate directly to outcome.

However, pathology, i.e. the identifying of the exact type, is crucial. You would be well served to ask for a review of the pathology by a different laboratpry, as mistakes are made, particularly in lymphomas. I know of a patient who has been at stage IV at least twice, and has had approximately 100 tumors over the past 10 years. Today, that person has no sign of lymphoma.

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

Thanks for thwe kind and informative replies po18guy and Everista.  Really all I can do is wait for my appointment this monday and hopefully find out more.  The constipation and pain are all I can deal with now and that has improved thanks to a better diet and some laxitive which in turns allows me to take my hydrocodene with out binding up!  Thanks again!

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

Been in your shoes. I'm happy to say I'm fighting and alive. My first post is here under " Newbie with little support". This site and live chat room has been the best thing I found on the net. I learned that no matter what you are fighting no 2 cases are exactly alike. I am on chemo every 21 days for 6 treatments. 2 down 4 to go. Be careful what you read online and go for the legitimate sites you have heard about. People here are very understanding and helpful if you want experiences. The best to you and your family. It isn't a fun journey by any means but you can do it. 

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

CritterMama, I read through your story and you are a strong woman.  I understand the battle I have coming up and with folks like you leading the way, it sure eases it.  This Monday will prbably get the ball rolling for me too!  

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

RCHOP will begin next Tuesday.  I will be getting a total Pet-Scan and Cat Scan  and bone marrow biopsy before treatments begin.  One tumor is so close to the brain that they will be giving me the chemo for that one in the spinal chord by a radiologist(not sure how this spinal chord one works).  The oncoligist said that the stage is not that crucial as this is an agressive fast growing cancer that usually responds well to chemo.  The doctors said that this is an eviornmentally caused cancer(factory emmissions, agent orange, etc) but to determine where and when it got me is not relevant or even possible. I have my thoughts on where it came from but I am not going to worry about that!  Anyone know about the spnial chord chemo?  Thanks for listening!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

Bill you now have the test results to move forward toward cure. Your cancer is one of the most common of all Lymphomas, and therefore is better studied than most.  It seems counter-intuitive, but the more aggressive Lymphomas are usually more curable than indolent ones.  But aggressive strains can be harder to get into initial complete remission. Once complete remission is achieved with an aggressive strain, it is statistically more likely to stay there than an indolent one will.  These are statistical generalities, and what occurs with any given individual can vary wildly.

There are numerous subdivisions even within DLBCL, and at some point it is worth knowing which of these you have (your pathology report might already specify this -- ask for a paper copy of the report and retain it).

I would be interested in what type of Radiation Therapy (RT) delivery you will get, since this is much discussed in prostate and breast cancer sites (I also have had prostate cancer).  The most common technology is IGRT, or 'Image Guided Radiation Technology,' while SBRT is a more rapid technique, known by its brand names of Cyberknife or Varian True Beam.

I would say that you are very wise in not concerning yourself with possible causes of your disease since, as the doctor noted, proof would be impossible.  But, the US VA has a policy of paying for most cancers that later develope in people who can prove exposure to Agent Orange. IF you were in the military, and had exposure to Agent Orange, this would be a huge monetary benefit to you.  If a veteran, your local VA office can answer these questions for you.

Most Lymphomas are of unknown causality, and no rigorous links to genetics, diet, or toxins is widely accepted among oncologists. There are ancedotal and some small studies that attempt to explain etiology (cause), but as I noted, none have broad-based acceptance.

I had service-related, long-term exposure to the various types of radiation emitted by nuclear warheads, reactors, Tritium gas, and even PCBs (a non-nuclear liquid in many electronic devices), but my doctors have had no interest in any of that, since it was so long ago, and so tenuous to try to connect.  I have also had probably 200 static chest x-rays over a period of years due to crush trauma, but what got me to lymphoma cannot be known in today's medicine.

Many here have had CNS (central nervous system) cancers and treatments, and I hope they write soon for you.  Most likely, your case is very beatable,

max

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

Hi Bill.  I also had DLBCL. Very aggressive.  I have been in remission for a short 18 months.  I would love to figure out what caused my cancer to peak it’s ugly head.  There is a class action lawsuit in the city I live in against a barrel refinishing company because of the numerous violations and emissions they have spewed over the last 30 years.  People in the area who have cancer are bound and determined to blame that company. Could it be? I guess, but it could also be the swamp I played in as a kid. The major airport I live near where I can actually smell the jet fuel, the trains and busses, the coal dust that part of the city Is built on where I used to run my dog.  Could it be Patrick Cudahy ( yes you’ve all heard of that company! They make great bacon and I live within a mile of it).  It’s never ending, which is why it would be so hard to find the actual cause. 

We need to rely on research and great doctors at this point! 

we'll be here to follow your story! Good luck!

Sharon

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

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

lindary's picture
lindary
Posts: 657
Joined: Mar 2015

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.

Evarista
Posts: 265
Joined: May 2017

Well, now at least you know what you have to do going forward.  The spinal infusion of chemo is actually a standard part of the treatment, as far as I can tell. I had it with 4 of my 6 rounds of chemo and many others have reported the same.  The infusion was methotrexate, although perhaps you will get a different cocktail? Relatively uneventful component of the whole protocol for me.  Some tips:  take Tylenol 45 minutes beforehand.  If you find that you get a headache after the first one, ask for Fioricet instead.  Do obey the lay-flat-for-an-hour rule after the tap. 

The other thing to watch out for is that the R-CHOP may contribute significantly to your constipation issue...So definitely stay on top of that. Best of luck with it all.

Added note:  spinal chemo (tap/infusion) will likely be performed by a Radiation Oncologist (at least mine were) or specially trained Radiologist.  This does not neccessarily mean that you will be getting "radiation treatment". At the same time, they will probably collect some spinal fluid for further analysis of your tumor.

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

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!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

Love your view of life and living, Bill.  It will help carry you through this.

Please do indeed continue to write,

max

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

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

May 1
Posts: 2
Joined: Jun 2018

"life is the school, love is the lesson" (did you start this thread/blog?)

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

No I did not start that thread but that is well said.  Love is always the answer in my book!

 

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

Hi everybody.  I still don't completely understand my diagnosis and treatments.   Here's what I do know:  the diagnosis is DLBC-NHL with no dna damage(or change).  It is an agressive form that has spread to my pancreas, bones, and lungs.  Also it is found in the pharynlgheal(sic) erea behind the nose and close to the brain, therefore, the spinal infusion).  The rest of the treatments are what most of us know as RCHOP.  In my case it is the chemo drugs of:  Rituxamab, Cyclophosphamide, Doxorubicin, vincristine, prednisone.  These are given every 3 weeks.  I don't understand even what drug goes in the spinal infusion.  Maybe someone here knows.  

 

On day one I found out that there is pain in my body, as for some reason, All the hot spot areas in my body began to hurt quite bad.  They said they would have shut the infusion down and I asked if I could take more oxy and keep going and we did and I got through the infusion.  Just about to leave and I became frozen like an icecream in the Antartica region.  They shotr me up with demerol and I got better and went home done with day one of my treatments.  Day 2 was uneventful. I thank God for that!  

 

I am going to try to play with my band saturday night and just to be able to try is greatful on it's own merits!

 

Evarista
Posts: 265
Joined: May 2017

The only one I've seen mentioned (and the one that I had) is methotrexate, MTX for short.  But ask them!  No direct experience with your other reactions, except the "rigours", which were freezing and violent shaking for me. I had these before I even started chemo.  I don't think they are all that unusual though. I do hope you feel well enough to play Saturday night!

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Hi Bill. I'm sorry about your progression. I started another thread recently and got my port installed today. R-CHOP next week...let's keep in touch. God bless, stay strong.

That's really all we can do.

Aaron

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

Hi!  Well the biopsy of the spinal chord fluid was negative for lyphoma which seems like a good thing to me.  And yes I have begun to depend on(and enjoy) this site for hope, guidance and support and plan on staying the entire duration of my life.  I meet with the oncoligist April 9th to discuss treatment, bone marrow biopsy(I still don't know those results) and other things.  I plan on taking it from there!

Evarista
Posts: 265
Joined: May 2017

Not just a good thing...A great thing! Good luck going forward. 

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

I feel so fortunate to have played a 4 hour gig in a standing room only crowd last night.  I do feel fine afterwards and am thankful for that.  Thanks for listening.  Love is life and life is love!

Karens827
Posts: 1
Joined: Mar 2018

Bill1958, my father who is 86 was diagnosed with Lymphoma in May 2017.  He underwent aggressive chemo treatments and was declared cancer free in December.  There is hope!  Lymphoma is treatable.  Keep the faith.

Amarie121
Posts: 4
Joined: Mar 2018

My son plays guitar and I know how therapeutic it is.  I love the photo of you playing guitar.  Enjoy the good moments!  I had 5 rounds of R-CHOP (2016) and 7 rounds of Rituxan in 2016-2017. I was in remission from stage 3 Diffuse Large B Cell And Stage 4 Follicular from 7/16 until this December.  The Diffuse Large B Cell responds great to R-CHOP!  I’m still in remission from that, only the follicular is back, which we expected but not this soon.  My advice is not to be discouraged if your energy is zapped as treatment wears on...it will recover!  I felt like I would never be able to get back to my life; it took about a year but each week got better and better.  Other advice is to take any fever very seriously during chemo; I was hospitalized multiple times for neutropenia but that is why I am here today and why my kids have their mom!  God bless you.  

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

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
Posts: 47
Joined: Mar 2018

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

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

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.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

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

ShadyGuy
Posts: 407
Joined: Jan 2017

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.

DJS628
Posts: 47
Joined: Mar 2018

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's picture
Bill1958
Posts: 62
Joined: Feb 2018

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.

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

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
Posts: 2
Joined: Apr 2018

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's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

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's picture
Bill1958
Posts: 62
Joined: Feb 2018

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
Posts: 265
Joined: May 2017

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's picture
AaronW
Posts: 45
Joined: Aug 2010

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's picture
Bill1958
Posts: 62
Joined: Feb 2018

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's picture
Scubamom for two
Posts: 19
Joined: Apr 2018

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's picture
Brlennon812
Posts: 6
Joined: Apr 2018

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's picture
Bill1958
Posts: 62
Joined: Feb 2018

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.

 

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

That is great to hear Bill. I just had a PET Scan yesterday and see my onc on Tuesday just before my third R-CHOP. They told me we were aiming for six and I see you are doing five. Any idea on why a certain number of treatments? After what treatment will they scan you again or do you have to do the remaining three first?

Aaron

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Bill1958
Posts: 62
Joined: Feb 2018

I ment 4 treatments for a total of 6 of RCHOP.  They scaned me after 2 treatments(pet and cat) and called it 90 % remission because of a hot spot on my lung(which may or may not be cancer).. They will scan me again after the 4th treatment.  Hoping you get good scan news too Aaron.

Anonymous user (not verified)

Hi Bill,

Came across this comment this afternoon and wanted to share in your relief with such positive results.  YAY!

My Terry has had two RCHOP treatments and we discovered from viewing his blood tests that his LDH level is now within normal limits.  Our lab sets the maximum at 220.  Terry's, we found out, was "only" at 226 before his first treatment, after they surgically reomved the tumor in his abdomen in April.  That tells me that his lymphoma wasn't necessarily "off the charts" to begin with.  After only one hit, it dropped to 185; so, we're finding a level of assurance that his treatments will also bring him into remission.  Of course, we won't know with any degree of certainty until they do the repeat PET at the end of July; but this news encouraged us a great deal.  Do you happen to know what your beginning LDH level was and where it may be now?

Just curious if you've ever come across this one result or not.

Thanks!

Dawn

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gbread
Posts: 13
Joined: May 2018

Has your doc mentioned CAR-T immunotherapy?  It was approved last year for this type of lymphoma. 

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Bill1958
Posts: 62
Joined: Feb 2018

I have heard of this therapy via this web site, but that is all.  It sounds promising.  Right now, I'm sure the oncologist will stick with RCHOP which has been showing good results for me

Evarista
Posts: 265
Joined: May 2017

AFAIK, at this stage, CAR-T is not used as a first line therapy.  Not even sure that it is being used as a second line, if R-CHOP/R-EPOCH fail.  If I recall correctly, next step would be autologous stem cell transplant.  It that failed, then CAR-T.  I imagine that this is a fluid situation as more data becomes available.  Also, the currently approved CAR-T therapy is for tumors that express the cell surface molecule CD19.  Not all of them do, unfortunately.  Next generation CAR-T's are in the works, though, including a CD22 and a hybrid CD20 of some sort (I forget the specifics).  These are still in or just entering clinical trials.  Max or Po may be able to update us on these. This field seems to be moving rapidly, which is good news for all of us.  Be well.

ShadyGuy
Posts: 407
Joined: Jan 2017

Wouldn’t CAR-T targeting CD22 kill all b-cells, healthy and lymphoma, the way Rituxan does? Isn’t the whole idea to attack only the lymphoma cells, IE a magic bullet? They need a different marker which is only on cancer cells, maybe not the same one for each patient.

Evarista
Posts: 265
Joined: May 2017

Shady, you are correct I think.  CD20, CD19, CD22 are all B-cell markers. Presumably the goal is to knock out every last one of them. The normals just get caught in the crossfire  If a lymphoma cell has slipped through the CD20 (Ritxuan) net, then the idea is to go after them with a different target.  If you look at the clinical trials, you may see that some of the newer ones are hybrid with respect to target...The old one-two punch, as it were.  Simply put, these molecules are not only different on the outside, but also on how they send signals on the inside of the cell.  The antibodies themselves are also structurally different and don't necessarily "kill" in the same way. This is why the newer anti-CD20's differ from Rituxan in mechanism of action (I think).

A magic bullet has been the oncologists dream for quite some time.  Sincerely hope with get there!

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