I'll jump in here Deb hehe ..
Well before lymphoma and my myriad of depressive items popped up
in my life I was a mom and nana, truely happy working at a truckstop
as a cashier, tons of friends and laughter galore.
I'll cut out the middle section and jump straight to the lymphoma ..
Jump ahead 7 years from then , I was depressed and alone .. got rearended
by a car and decided to get checked by the ER to make sure my back
was ok, was taking my shower and felt lumps on my leg .. hmmm ..
might as well ask about those while I'm there ..
WELL ! Lecture was me, the accident got tossed aside and the doc was
all over me about the secondary lumps.
After the usual formalitys I found out I had
follicular lymphoma, stage 4, widely spread groin, leg, chest, abdoman,
and after much shock began the Lightest form of tratment available.
Was testing the water so to speak until I got my witts about me and
hopeing to buy myself some time.
well the leg got HUGE like pillsbury doughboy big, and turned nice
shade of black.
And in my bedridden state I researched online and found an angel
on here ... ROSS!
He was my first ray of hope and encouragement. that was aug. 27. 2009
my hubbys birthday :-)
I am married to a awsome man, I have 1 gr-child i can see
a son who is struggling trting to find himself ( alcoholism ) ex-army
4 gr-kids whom i dont see and a daughter passed from cervical cancer.
I take pill form cytoxin every 3 weeks with prednazone...we recently
tried a w &w to see if i could have a vacation but it was immediately
apparent that was not gonna happen as it was back within the first month.
This might seem long winded but it is my very shortest version (giggles)

It is awsome to see active converstion going on here now as it use to
be hit and miss before. I am proud of how far this site has come :)
God Bless Deb.

I agree good point Deb :-) glad to be here you all seem so nice :-)

Well Frederick, you are now officially part of our group. Tell us about yourself.

And thanks for writing, Linda, that was exactly what I wanted -- a record of who we are and what we have been through.

I will write mine tomorrow. For some reason, I am very tired tonight.

My name is Ross, I'm a Californian stuck in Texas, by profession I'm a freelance journalist and writer, I just turned 40, so far, to my knowledge, I've never had cancer of any kind, which would normally position me as the least capable moderator of the lymphoma boards here, which is what I am anyway. In fact, these may be the web's only boards dedicated to lymphoma not moderated by a lymphoma survivor.

This doesn't mean my life hasn't been atrociously impacted by a lymphoid cancer. It has. This does mean I probably lack some empathy- I can't commiserate with you about the shitty details of lymphoma treatment. But I will go to the mat for you if you ask; I've been an ad hoc health care advocate many times and have zero patience for the arrogance of doctors and nurses.

I have masses of resources at my fingertips. I'll run down answers for you, just ask. It's impossible for me to catch every post here, but I try. If you think I should know about one, PM me about it.

Beyond that I'm married, no kids, four cats, and I am a hockey freak.

Hi, I am Kathy, a nurse by trade. I am 57 and a survivor of Hogkins Lymphoma, Breast Cancer, and Lymphoma. The last 2 within the last 5 years. It's been a wild ride but as of right now the PET scans say I am cancer free!!! I am divorced but living with a very supportive boyfriend, who has been there to help me thru the last 2 bouts of cancer. I also have 1 daughter, grown, 3 cats and 1 rabbit . We all live in Wisconsin.

I have lot's of empathy and medical knowledge which I freely hand out but not to exclude that you should ALWAYS follow up any concerns with your Oncology MD. I understand the ins and outs of the medical system can be very frustrating and some MD's aren't the best at communicating what you so desperately want to know, with that I can lend a helping hand.

The breast cancer was discovered by a routine Mamogram. I had no lump or any signs of one, no family history either. DON't ever skip your routine exam! I almost cancelled this exam. I finished 2 years of chemo and preventative chemo had 6months reprieve and discovered Lymphoma via a swollen node in my neck that did not hurt. (Bad sign). I recently finished 6 rounds of R-CHOP a nasty one to have to do. And am now working on regainning my strength back so I can go back to work very shortly! I welcome any new cancer members!!

Hi All
My Name is Frederick Sperry aka Skinny Ginny,

Well I was diagnosed in March 2010 with stage 4 liver cancer and was basically told by the liver specialist , that he couldn't do anythin for me, told me had maybe a year to live tops 15 mos. well I couldn't get chemo, couldn't get radiation, and sent me out on my way with doom hanging over me, but to top that off he also said I had Hep C, HELLO... train wreck coming up .. so wentt to oncologist at the time it was a mass of 10.8 cm by 8. 4 i think, Oncologist decided to try Nexavar a cancer fighting drug, well in the last 16 mos the tumor has shrunk to 8.5 x 6.2 appx. and I am holding to a slim 184 lbs. and liver still functionin good, well anyhow that is a run down, and i love to write poetry because it does my body good and my soul
thank you
Frederick
aka Skinny Ginny

WTG ! Skinny Ginny
Give them hell and show them what your made of. Congrats hon

I feel so good on here you all are so supportive and upbeat does my souls good, thank you .. and ty nana :)
Frederick

My name is Debra and my story is a little different than most. I was diagnosed with non-hodgkins Lymphoma in 1991 (I do not know what type under this new classification system). It is easy to remember the year because it was right after my son was born, and I was "lumpy". I kept going back to the Doctor and he kept saying that everyone was lumpy after giving birth -- but I knew something was wrong. FINALLY, five months after I gave birth they diagnosed the lymphoma. I was put on oral chemotherapy. After six months, they were coming to a turning point when the chemotherapy wasn't working, and if I stayed on any longer I would develop a tolerance. They tried a stronger combination and it worked, but unfortunately it put me through pre-mature menopause (being on chemotherapy for ten months total!) and I couldn't have any more children (now-a-days they can do a lot for that, but back then they couldn't). Well, I was just glad to be alive, I guess.

I have had two relapses since then (at first I said one, but I believe it was two -- it is difficult to remember). For both, they put me on the same chlorambucil and prednisone (figuring that it worked once, it would work again). The last relapse was four years ago.

The reason why I am here is that I am sure that it has re-occurred again (one knows, one knows). The soonest Doctors appointment I could get is July 22nd, and rather than sit and worry I am here getting encouraged. I feel able to face an unfavorable diagnosis.

Oh, I am divorced with two sons -- one is 20 and the other is 26. I earn a living as a math teacher in a High School. Isn't this fun on my summer vacation -- HA!)

Deb
A Huge gentle hug to you hon. I am so happy to finally read your story and I can certainly relate to your concern over having to wait for an appt., theres no reason they couldn't fit you in really but as we are all aware in lymphoma area, your not considered a hurry. We are only chronic.
Only 6 months on the oral? ouch .. certainly you know your body better than anyone, I pray you can find a treatment ( if needed ) that is well tolerated.
Please stay in touch as we do need each other and more than we even
realize i'm sure.

Thanks for your support and the hug, Linda.

No, thanks for pointing out that my story needed clarification. Six months was the turning point, but they continued and I stayed on oral chemotherapy for a total of 10 months (the first time). Its difficult for me to believe that I did all that with a new-born (remember I diagnosed right after my son was born). I guess its only made me stronger!

No Deb
I could never in my wildest dreams imagine what you went thru...my heart aches at the very thought of it. You MUST be the strongest person I've ever met .. GOD Bless you hon

Debra
Yes. as a group-we can help you get through anything.
POWER IN THE NUMBERS
how fitting for a mathy teach!!!
and Skinny, Nana, Ross-thank you . I have a better sense of the names and piccys.
Yes I am going to post My Story.

My name is Geri, mispronounced with a hard G like Gheri. i was born in BROOKLYN!, but grew up in Western MA. I admit to getting a tad lost in the purple haze of the late sixties. :) The love of my life found me at age 34, but we did not get married until I was 40. I am now 64…. ACCCKK!
I started professionally as a teacher, but switched to the library because one did not have to be so stern. The path of least resistance has always attracted me. I took early retirement from being a public servant, I mean librarian, and then found the bestest job in my life, as a less than part time school librarian in a K-8 private school. I loved my students, and realized my talent for reading a-loud and mesmerizing children with just the sound of my voice. I also taught them how to get the most out of a library, and we had FUN.
Cancer was always part of life in as my grandmother died of colon cancer. And my astrological sign is on the cusp of Gemini and Cancer.
I have always been healthy, thank God, but I will say that when I did get colds, they would last forever.
At age 59, in 2006, I got summer laryngitis, and a lump popped out on my neck. I immediately did the research, and realized that it was unlikely I was the one in a million whose lump was nothing. Nonetheless, I patiently waited the six months until the Drs. tests and biopsy confirmed my thinking. Why I had to be right that one time… When the surgeon took my hand and told me I had lymphoma, I replied, “Yes, I know.”
Stage three, B-cell marginal zone indolent is what I have. A stinging insect(not a mosquito) set off a lymph node crisis. I had treatment in 2010, and got my lovely neck back from the lumpolicious monster it had become. I lost my dear, 18 month older brother to lung cancer. He was dx eight months after I was, and after nine months, died on my birthday. His anger overshadowed everything. The loss of my brother made me choose be happy, and silly, and do whatever I need as to do to keep life that way. He was so angry about his situation, and I did not want to be that way. My mother is turning 98 in Sept., but doing physically poorly, and does not know about my cancer. She does not need to know my brother’s loss pushed her into congestive heart failure.
I found this SG after I started treatment. I choose not to kvetch, well maybe a little, and have found a wonderful group of caring smart, clever, and wonderful people from all over the world, all standing up to the rotten, lousy, stinking or farshtunkeneh (far-shtunk-en-eh) cancer, and giving me new inspiration to document my offbeat thinking.

Geri
This was such a wonderful idea as we are finding we have so much more
in common than this stinking cancer, the parts of life that we could certainly do without for sure.
I lost my Dad and step-brother to lung cancer, its a tough one to say the very least. But moms alzheimers was by far the worst one, god forbid, I don't wish that on anyones worst enemy.
Your strong and sweet and I'm so glad your taking a path that leads to peace rather than being torn by anguish.
I too admire everyone on here and love reading and getting to know you all it makes a me humbled to hear some.
Thank you for sharing.

Im Tony and i live in missouri. i just turned 53, never been married, havent any kids and life sucks big time........... (what? how can that be?!)

i was first dx with this miserable lymphoma in august of '09. i had a bump on my head, and it hurt! so i went to my internist of 15 years and showed him. he didnt think too much about it, and gave me some bactrim.

i, at that very moment, noticed that my neck had a lymph node that was a little swollen. i figured it was from the head bump, right? well the doc checked it and said that he wanted to have it biopsied. whaaaaaa?

biopsy comes back in a couple of days. "small lymphocytic lymphoma." say who? ok, so now its on...........

i go see the onc and met my team. "oh, this is easy to fix. theres no cure, but it can be treated and dealt with. youre not gonna die" well that was good news. so lets get this chemo thing overwith and done so i can go back to whatever it was i was doing.........

started the de facto treatment, and after 4 months a scan showed no results at all. on to the next treatment which was "treanda" basically a leukemia chemo drug. eight agonizing treatments and three hospital stays later, i had what they called a "positive response" they dont use the term "remission" apparently.

after recovering from the dreadful treanda and hospital stays (one for methemoglobinemia... look it up!) for 10 months i find out that the lymphoma returned in march of '11. so im right back where i started from, with the extra added attraction of having breathing difficulties because of either the rituxan or the treanda. my moneys on the treanda, but i know someone who has breathing issues from rituxan......... so who the hell knows?

i have an appt. with my onc doc on 7/20/11 to see what we can see. he told me that he doesnt want me to have any more chemo right now. he wants to deal with the breathing issue first, which damn well better be temporary.........

my thanks to everyone whose path ive crossed and who gave me advice, comfort, support, and a laugh or two, because i am full of rage that i have cancer and nothing in this universe will ever change that, exept a cure.

special thanks to Ross, who helped me very much throughout my ordeal.

i just want to be ok again. ive never been sick in my life. i dont even know what the flu feels like.......... i want my life back.

thanks for reading!

Tony.

Tony:

Thank you so much for sharing. Now I understand your thread. It is good for me to hear the whole story, rather than the bits and pieces that I've been picking up.

Let's hope for a good report on the 20th.

Thats my Tman ... Love ya sweetie .. happy you posted :)

Hi,I'm Michele-Pa from where else Pennsylvania and I'm your long time survivor.Found my first neck lump in 1993 and was dx in 1995 at which time I was B cell stage 1 Follicular small cleaved NHL. I was told my disease was local so of course I was given 6 weeks of Radiation.Was invovled in a car crash 1996 and 2 more lumps popped up but was still told I was in remission so I changed oncs.Had biopsies done and low and behold I was B cell stage 3 Follicular lg& sm cleaved. I was given Chop 6 treatments 96-97.Then thereafter the party really gets started as my remission ended in 2000 and along came Rituxan.I did a whole bunch of this juicy juice.4 rounds Yr 2000 Oct-4rounds Mar.2003-4roundsSept 2003-4rounds Apr 2004.Then in April 2006 had surgery to remove a lump in my left cheek so you got it 4rounds Rituxan and again May 2006.Now I get a little break but find a lump on my left eyebrow yep surgery May 2007.Oh gee they don't get it all so now I grow a horn by my eye ..yikes.So now we do 12 Radiation.No break yet Aug 2008-Rituxan plus Jan2009.Will it ever end...surgeryJune 2009 to remove lump in paroid gland.July 2009 Rituxan-Jan 2010-Rituxan.Just no stopping it or is there...Jan2011...Treanda/Rituxan together for 4 months 2 days a week,of which my body totally did not like.Broke out in a rash with severe itching so we stopped the treatment.So far no lumps bumps or itching."YA BABY" thats what I'm talking about.I had always managed to go on 2 vacations a year since this all began.Having this disease made me realize how quickly life can be taken away.Not that all this treatment was easy but planning vacations in the spring and fall made me fight harder to get well and have something to look forward to.Was a work aholic in my younger years but things have slowed down now at age 56.Got a whole lot of the chemobrain happening but life is still worth every minute of living.Have a wonderful husband of 17 yrs a daughter and 4 step children.So thats why I'm the long time survivor.Hugs..keep fighting.

Michele
Yes indeed it has been a long road for you, they should be calling
you mike tyson jr here.
Thank you Tony for the compliment, maybe tomarrow I'll write
a bit more but today my lymodema is really giving this left leg
a run for its money aching and swelling. Hopefully will be better
tomarrow, it usually only lasts a few days.
Sorry for being very interactive today guys. Be back to me soon :)

Hey Nana we all have our days and today was yours. Hope the leg feels better soon.

Welcome, Debra and Frederick! Not to be a party pooper, but I've chatted enough about my dx in the past and all these folks have heard it. And because I am so chatty I've shared lots about my personal life. Air Force brat (and I was pretty braty, just ask my poor ol teachers! I was diagnosed with adult ADD in 95. If I could change anything in my life it would have been to have had medication for it as a child instead of the spanking standards used in the early 60's. Without going into great detail I enter the public school system a happy camper and came out hating it and believing I would never amount to anything. Throw in the mix a dysfunctional family and you had the case book example of an under achieving self hating person. What saved me was my relationship with God. I know that sounds cliche, but I don't care, I am not a Bible thumper, but a person who has been to the bottom of emotional pain and discovered even there I was not alone. I do not have naive blind faith, for I question everything, but I have real faith in knowing the only reason I am here is because of this relationship which provided me with help. I believe at every turn in our life there are lessons to be learned, experiences that open and change our preconceived ideas of what should be, or not be. Some of these lessons are unbearably hard to go through, but the reward is growth for our soul. I believe that is why we are all here, to help one another grow. Everything else is just window dressing and has no lasting value, save that of the basic necessities to sustain life itself, food, shelter, etc.
Once those needs are met we experience aloneness and seek out others and long to feel loved. If we don't experience unconditional love as children it is a struggle to give it as an adult. But it is not impossible. I have been blessed in my adult life by a husband and two daughters, that feel that way which has allowed me to grow and heal. Working with children of all ages for over 25 years, within schools, also allowed me to change my perspective about teachers and education. Because of my personal experience as a "problem child" I had valuable insight to share with the teachers I worked with, and this too helped me heal. I began to attend college classes and found with note cards and extra testing time I could excel. Because I love art and writing, I went back and forth about what to major in. After we moved back to Texas 6 years ago I decided to do art work on my own, vs working for a teaching degree. I have half hazardly done this, mainly because life keeps getting in the way. And that's fine, I am more than happy for life to get in my way for the next twenty years or so! God Bless!
KBeale

KBeale: Thank you for sharing. It is good to know something about you. Yes, it seems that many of you have been here a long time and know a lot about each other. Frederick and I are the "newbies" and this thread has helped a lot to put a personality behind the name (you can barely see the picture here, so pictures don't help!)

And I like your "growth for the soul" philosophy of life (and it is probably true!) I appreciated your words.

Hello my name is Andy,
At the age of 45 I was diagnosed with Stage 3 Diffuse Large B Cell NHL Sept 09. I had a large baseball sized tumor in by thymus gland behind the sternum, another in a lymph node that wrapped around my left lung, and a small spot in my spleen. I was having chest pain and breathing issues that finally brought me to the Dr. office. At the time they thought I had bronchitis and gave me an antibiotic after doing nothing more than put a stethascope on my back. A week later the pain didn't go away and at the advice of the nurse on the phone, checked myself into the ER (she said "you don't make Dr. appts for chest pain you go to the E.R.") After an EKG and two x-rays, the Doc said I may have a blood clot or spot of pheumonia, and wanted to do a CAT scan to be sure.

He then gave me the news! You have cancer.

Less than a week later I had bone marrow biopsy, needle biopsy, and my first of eight R-CHOP cocktails (two weeks apart). I got the remisson tag after the 8th round and have been cancer free since. My 1.75 year scan is August 5th. As you can all understand I'm nervous but happy to be alive.
Thank you for taking the time to support each other and me over the last few years. It's good to not feel like you're are alone when you get news like this.

Hey welcome Andy- Glad to have you join it is nice to hear everyone's story so we kinda know where everyone is coming from. Pick a name or Geri will give you one. We have imaginary trips and parties and just have fun. We are also very supportive and there for anyone having a "Day or stretch" of bad days. Laughter is the best medicine and so that i what we do! Join us on the Lymphonics thread ! Welcome!

PS Good luck on your scan in August. We ALL get nerved up before our appts. I guess that is to be expected after what we went thru to get here!!

I am 54 years old married 29 years coming up in August I have two daughters 26 and 28 the older one has a son who is two years old. Being a Grampa is wonderful!

I spent my life doing a number of different jobs from mining and sawmills to construction and Oilfield. As I got older I opted for more mental oriented work and did some retail sales, custom home marketing and finally Real Estate. In the last ten years I have had health issues pop up in a big way which was a surprise as I was always very healthy.

2010 was a huge year for me. I began seeing Dr's for chest pain and in May I spent 8 days in the hospital, to be finally diagnosed with prinzmetals disease (or coronary artery spasms) I was advised to quit Real Estate due to stress which caused my arteries to spasm giving me angina pain and heart risk. I was able to get onto a disability pension as a result of my diagnosis and am currently medically retired.

Next approximately 3 months later I went for lung testing and it was determined I have chronic bronchitis.

In December 2010 I went for a CT scan for a bulge and tearing pain in the left upper quadrant of my abdomen, as well as thighs going numb on both sides and severe low back pain. They did not find the cause of those symptoms but did find suspicious lymph nodes throughout my body. Lymphadenopathy in 4-5 lymph chains below the diaphram and Innumerable nodes above the diaphram in almost every lymph chain. I received a bone marrow test where they got none of the marrow and CT's without dye due to a dye allergy. These limitations make it hard to know for sure if the organs or bone marrow are involved but in any case I was diagnosed with stage-3 grade-2 follicular lymphoma, an estimated 10 or more years progressed.

I am now 6 treatments into an 8 treatment round of RCV-P and the lymphoma is responding but the original problems are not so must be unrelated. After chemo it is back to square one tryting to find the cause of the most debilitating problems I have.

I am holding up well and have lots of support but it is great to be able to meet others with similar issues.

Have a Great Day! :) Don

Hi southernbc

Your description pain in the left upper quadrant of my abdomen, as well as thighs going numb on both sides and severe low back pain sounds exactly like the what I have been fighting for 2 years now.
The dye for scan and I did not do bone marrow , I did dye for scan but
have found no help in the medical community for the hip abdomen and leg pain I have constantly. I am currently trying some minor physical theorapy which has helped a bit but not in large.
I am follicular stage 4b in groin, leg, chest, abdomen. Mine was 5cm big
2 yrs ago when I started treatment but has responded well so far and shrunk back to where they belong. But the pain is an uphill battle.
I pray you find help for yours, if you ever do please let me know.

Hey Andy, I remember reading some of your earlier posts, glad you joined in. we can always use the wisdom from people like you who are their own best advocate and it saved their life. As I'm sure you've read from other posts, it's hard to get people to seek second opinions or push beyond what their primary says is wrong. I don't blame them, I did it myself for almost a year. Who wants that job, but when something's not right you often know it. So glad you kept trying to find out, especially with your Diffuse type and where it was located. I hope you have great results in Aug. Please keep us posted. KBeale

Thanks Linda,

I will post if I find out what is going on. I hope you have more success nailing down the cause of this than I have. I have been trying on and off for ten years.

Have a Great day!
Don

Hey southernbc- Welcome, You have a long history of fighting you just didn't know it!, glad you found us. We are a lot of fun we have immaginary parties and trips under the Lymphonics thread, and just plain have fun BUT we are there for anyone that needs support or an ear to listen. Feel to chime in on our adventures!

Thanks Rascal,
I hope your year is going well!
Don

Hi Andy and SouthernBC:

It is a pleasure to meet you. I am new here (although obviously not new to Lymphoma -- HA!) and my story is on this thread.

I have been very happy to have found this support group, and I hope that you will hang around and feel the same way also!

Thanks Debra!
I will check out your story.
Don

Hi everyone! Andy...my story is similar to yours. I had a cough and my primary doc thought I had bronchitis. He gave me an inhaler and sent me on my way. One week later I went back in as I was getting worse. The doc said that 20% of the time bronchitis is bacterial so they gave me an anti-biotic. I took it for 10 days and continued to get worse. I went back in again and they thought it might be pneumonia so we did a chest xray...no sign of pneumonia. Well, maybe it is atypical pneumonia. I got 3 days worth of an extra strong anti-biotic via I.V. Still nothing. At this point, my doc referred me to an infectious disease doc. Meanwhile, my wife spoke to our good friend who is a nurse practitioner. By this time, I had lost 25 lbs., was having night sweats and was extremely fatigued. Our good friend said, "If he was my patient, he would be in the hospital." I went to the ER that night and they ran a CT scan. The tech came back in and said that the ER doc wanted to run another one. I knew something was up. About an hour later I found out that I had a softball sized tumor in my spleen. After all of the biopsies and tests, it was determined that I had diffused large b cell (stage 2B).

I finished chemo on 6/3/2011 and had a PET scan on 6/28/2011. Unfortunately, I still have a couple of lymph nodes that show hypermetabolic activity. I'm on watch and wait until the end of August when we will do another scan and compare. I'm staying as positive as possible but I do occassionally fear that I will have to go to a salvage treatment. This is a great site! So much support and lots of laughs. I come here daily. Thanks everyone!

JC

Welcome JC,
It is sure scary how many times they need to go down the wrong path before the right one appears. I hope your nodes stabilize during W&W. Good Luck and prayers from :) Don in southernbc

Hey JC, Don and Andy, so glad you shared your stories! (kudos Deb) This stuff is so hard to DX I've never heard, even once, that someone went in with symptoms and it got dignosed quickly. Mine took close to a year, started with a swollen node at the base of my skull, (also vertigo started then) treatment -antibiotic, then two neck nodes, each side, blood work and ultra sound, negative and blood work positive for mono. Treatment-rest. Months later, nodes still there, hard nodes felt at collar bone, recommended, see allergist. Allergist-skin test, 12 vivals of blood, breathing test, results, no longer allergic to dogs, cats or cedar. Blood results, everything normal, leukemia ruled out, what about lymphoma? (I had been online researching) You need to see ENT doc for those tests. Huh? Screw this! Another month, nodes still up, spouse convinces me to go to ENT. ENT nice guy, take strong antibiotic, see ya in 2 wks. Next visit, hmmm nodes still up, sore at colar bone, same questions on symptoms, same answers except I said I was having more sweating at night. Hmmm, well maybe we should do a CAT scan. See you in 2 weeks, going on vacation. Results, suspicious, maybe we should do biopsy? 2weeks from biopsy to follow up with results. Spouse in room, Doc enters with look of shock and apologizes because the results show Diffuse large B. My response, "I knew it!" Spouses response, why did it take so long and what does this mean? I am sending you to an Onocolgists and she will explain everything. You will be scanned from head to toe and of course you will be given chemo. Spouse is shocked, family is shocked and on the way home I said I knew it, I just knew I had fucking cancer! Meet with Onc 2 dys later, set up for scan using radioactive isotope, bone biopsy, and port. Onc is going on vacation the next week. My homework is to get all the testing done a port put in.
Everyone is scared, I go and get hair cut, gonna face this stuff head on, still unaware there are so many different types of NHL. Week later, meet with Onc, well not sure if it is Diffuse, may be another type transforming, still will do chemo but want to give you the correct drugs, need to remove a node. See you in another week, then we will start chemo. At home after much reading and discussion decide to get a second at MD Anderson. They do CAT/contrast, Heart ck, another bone biopsy, node biopsy from under arm, conclusion - SLL/CLL stage IV , and because I was stable they suggested Watch & Wait, return every 3 mo for scans. Because this type is incurable, it was suggested to wait and use chemo once or if I became symptomatic. That was a year ago and over 2 yrs since first nodes swelled. Currently I have only one area active and to quote my Onc, "patient is fairly stable" (which proves he doesn't know me at all, lol) Seems I am creating my own little remission living out here in the country, and I can't ask for more than that. Thanks for listening! KBeale

Wow JC,
your story does sound remarkably similar. I know DLBC is very responsive to chemo, but it seems they don't often surgically remove lymph nodes or tumors with this type? I understand why they wouldn't with mine, becasue it was so close to the heart. Would a salvage treatment mean stem cell transplant? I beleive that would be plan B if mine returns, I have recieved the lifetime limit on one of the R-CHOP drugs. It's been great getting my life back, but it is sure hard to ignore that dark cloud that I keeps me wondering if the next scan will be clean or not.

Good luck to you, and I hope your prognosis improves.
-Andy