Diffuse Large B cell Lymphoma-Non-Hodgkins is diagnosis
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!
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Lymphoma diagnosis
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.
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Sorry to hear this
"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.
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Waiting on more info from doctors
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!
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I was diagnosed in Jan.
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.
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Diagnosis(DLBCL) NHL and treatment starts next Tuesday
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!
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Great Progress ForwardBill1958 said:Diagnosis(DLBCL) NHL and treatment starts next Tuesday
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!
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
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Spinal treatment
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.
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SuperBill1958 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!
Love your view of life and living, Bill. It will help carry you through this.
Please do indeed continue to write,
max
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Environmentally caused cancerBill1958 said:Diagnosis(DLBCL) NHL and treatment starts next Tuesday
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!
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
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ThanksSal0101 said:Environmentally caused cancer
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
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
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1st treatment down. new understandings coming to mind
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!
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Spinal durgBill1958 said:1st treatment down. new understandings coming to mind
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!
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!
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Hi Bill. I'm sorry about yourBill1958 said:1st treatment down. new understandings coming to mind
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!
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
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Some good news and I plan on staying on this site for the durati
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!
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Excellent news!Bill1958 said:Some good news and I plan on staying on this site for the durati
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!
Not just a good thing...A great thing! Good luck going forward.
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Praying for you!
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.
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