Diffuse Large B cell Lymphoma-Non-Hodgkins is diagnosis

Max Former Hodgkins Stage 3 said:

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

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

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.

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 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.  

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 Ride.  Learning music, like fighting cancer, is a long hard ride. 

Pulling for you,

max

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 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 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 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, 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.

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?