Newly Diagnosed with NHL (Yesterday)

Hello all, I went for a CT for unrelated issues back in December 2010. They saw swollen lymphs up to 4.2 CM in four different lymph chains below my Diaphram. A biopsy on my groin brought back results indicating Diffuse large B-cell or Burkitt Lymphoma.

The CT was only of my abdomen and I have firm non tender non moveable nodes under my jaw as well. I have had serious bone pain over the last couple of years and My legs go numb and are swelling. I am concerned about brain involvement as my memory is seriously deteriating in the last couple of years as well. Staging scares the H--- out of me. I have yet to see an oncologist. Thoughts are welcome.

Hi Southernbc, thank you so much for being here with us. I do not have direct experience with NHL, though am here to offer my support and help. I am sure that one of our wonderful Supporters will give you better insight.

Hello SOUTHERNBC, how are you today? I´ve been reading about Difuse B lhympoma, here´s what I found:
its a rapidly growth lymphoma, altough it responds well to treatment with chemoteraphy. 3 to 4 people will not present symptoms, and half of the people with this type of lymphoma cures itself with therapy.

about the Burkitt type, here´s what I found:
Its most likely this types of lymphoma on Africa, the type that appears on the states, is higly fixed with intensive chemoteraphy. On africa its related with the Epstein Barr virus. By any chance, have you travel there?, I don´t know, but it may cause a difference.

Hopes this help, I now chemoterapy sounds agressive, but we greater than it, and think, those two types of lymphona are highly curable!.

A big huge, and pardon my english, I´m from Argentina.

Hi there Southernbc, what a rough way to discover you have something like this. I would suggest checking out a lot of the threads on this Lymphoma support site. The manager for this site is Ross and he has posted a lot of helpful information about your type of cancer. Do not stress out about the stage because it does not mean the same thing as other types of cancer. I am listed as stage IV but that is because some of mine is in my bone. There is also very good information on the American Cancer Society, Lymphoma site and it will explain how they do staging as well as what all the different types of Lymphoma are. You may also want to get a second opinion as my first biopsy said Diffuse lg B and was later change to an indolent type (SLL) that is slow growing. The first biopsy had a large percent of Large B cells, but not any of the other ones. So I am not even in treatment now, and am doing what is called "Watchful Waiting". So you can see how the more tests and info your team gains the better you will be able to decide what to do. Good luck to you and keep us posted. Kathy

Hi Southerbc,I agree with Ivanbozo somewhat.People become so scared with they hear that word aggressive,but the truth is that many times it is "more treatable" then my slow growing indolent type which cannot be stopped.Fully understand where your coming from as at one time we have all been in your shoes.Just take a deep breath and slow down.When you say you have bone pain do you believe that you have cancer in your bones?One thing I have found out is not everything you see and read will happen to you.Actually when I found my 1st pea sized node I wasn't yet 40yrs.old- nearly 57 now.Been through tons of treatments.Was concerned about my brain and mind till I spoke with people my age who are dealing with many of the same issues.You need to relay everything to your doctor ,write it down.Take someone with you as your listener as you may miss half of what's said.The only signs I had way back when was the node, some weight loss and itching.Never was I thinking cancer though over the weight loss and itching.My best to you.Take care,Michele

We found out about 4 hours ago that mom has non hodgkins lymphoma, I am not sure about what type or what stage it is in. We will be meeting with the Doctor on Monday morning to find out specifics. The doctor did mention a drug called Redaxin or something like that. I have been unable to find it and wondered if anyone has heard of it?

Southernbc - welcome and sorry that you find your self here. DLBCL is one of the most responsive of the lymphomas to treatment and in half of presenting cases, full long term remission is achieved through the front line administration of a chemo regimen called CHOP-R. It can be rough but there are lots of folks on this board who have been there, done that and, from your posts, you strike me as the kind of person who will approach your case fully involved and fully informed. That is something that I think is very important for well being through the course of treatment though everyone is different, of course.

My favorite site for research is nhlcyberfamily found here:http://www.nhlcyberfamily.org/types/aggressive.htm

Part of what I appreciate about the site is the wealth of links to various research papers and authoritative information sources. Good luck with your treatment and best wishes for as easy a journey as possible. We are here when you need to update us or stop by for any other reason,

Good health,

kermica

Thanks Kermica,
I will check out your link thank you for that and the words of support. You are right I am going to be fully aware of the enemy I feel that is the only way to enter a battle.

Sending good thoughts for your Appt. today.Michele

Southernbc,
First things first, you need to see an Oncologist. He/she will order a bunch of testing. It's called the "Staging" process. In this process you will have a bone marrow biopsy to check for bone marrow involvment, You will have CT Scan of Head, Neck, Chest, Abdomin and Pelvis. And last but not least you will have a whole body Pet Scan. Also they should do Blood work. You will then return back to your Onco about a month later...and depending on what they find, you will come up with a plan, chemo and radiation together, or chemo alone or chemo then radiation after chemo (which is what I am getting). All of these tests will also give the Onco answers to how advanced or non advanced your cancer is. And they will stage the cancer and give you a prognosis. B Cell is the most aggressive which sounds scary but the highest success rate. I think I read somewhere or either my onco told me that DIffuse Large B Cell has a 90% CURE rate!!!! So stay possitive. Chemo sucks but we all have to go through hell to get to the other side so just keep that in the back of your mind...there is a goal we are trying to reach! and that is to WIN!

Just stay possitive! I have bone involvement (primary not metastatic) and usually with bone involvement it automattically puts one at stage 4. Also my CT Scan of my neck and abdomin showed lymphatic involvment of normal size but abnormal amounts and so they thought it was there as well but my Pet Scan showed it was just normal lymph nodes THANK GOD! So I have officially been staged at Stage 1E. So keep your head up! I had lumps and nodes in my neck that I could feel and it ended up being nothing and yours will too! I just know it! You will more than likely have R-Chop 6-8 cycles depending on how involved the cancer is. My Chemo cycles were once every 3 weeks for 6 cycles. I just completed my last cycle monday april 11, 2011. I will now go to Radiation Oncology to recieve radiation to my leg.. this is the easy part. :)

But Just FYI, these docs need to start moving now that your pathology has said DLBCL Time to rock and roll and get it out!!!!!!! December till now, which is april is quite a while... I waited from August till December before my treatment started and my tumor had grown DRASTICALLY in size in that short time so make them move! :)
Possitive thoughts and Prayers to you my friend!

I posted some questions to ask your onco in another post. I will try and find that and respost them here... they will help when you see your Onco!
Amy

You need to write questions down to ask him and some of these questions are:
1. What is my precise Diagnosis (EX Diffuse Large B Cell Lymphoma CD20+, Primary to the Left Medial Tibia is my diagnosis)
2. What stage am I?
3. What are my options?
4. What type of Chemo will I need and how many cycles?
5. How often will I need to have Chemo?
6. Will I need to have a Port a Cath Placed?
7. Will I need Radiation?
8. What Side effects might I encounter?
9. Are there medications that can be prescribed to counteract some side effects? What Medications are these?
10. What is my prognosis?
11. Do you have professionals that I may talk to if need be to help deal with the diagnosis, anxiety, worry and stress associated with this diagnosis?
12. Will I need to follow a special Diet?
13. Should I take any vitamins?
14. Will I need to recieve Neulasta shots?

I know there are more questions than this and you may be able to find a good list of questions at lymphoma.org but I cant think of anything right off the top of my head right now. It is crutial you will need a great support system during all of this. The first week you have chemo, it will really drain you. I often premade foods the week before Chemo and then froze them. My husband and kids thawed them as needed.

Amy

Sorry to hear of the DX for your Mom Sally, The drug you are looking for is called rituxan or rituxamab. Good Luck to you and Ypour Mom in this Battle.
My Dx-stage-3 grade-2 follicular NHL taking R-CVP

The national cancer society phone # is 18004cancer. They have all the updated info , all time sensitive, along with all the clinical trials you can get into if you feel the need. They will look everything up for you so you don't get misinformation and e-mail it to you or send it in the postal mail. You can get layman's terms or medical terms. Lymphomas are VERY hard to get correct info on as there are soo many sub types and regular types ,it almost takes a doctor to get the correct info or this site that specializes in cancers of all types. Hope this helps all

Hi southernbc,

I'm so sorry to hear about all of your problems. I can't stress the importance of a 2nd opinion at a teaching hospital (I went to Duke in NC), especially if you have cancer that is a little out of the ordinary. Teaching hospitals see so many cases, whereas our small small community hospital which is excellent, does not see many. From my experience, the "classic treatment" which is fine if you have all of your cancer cells that grow at the same rate and are in the same area. For example, I have both the medium fast growing B cells, but mostly the slow growing.

My best to you,

Ann

Hi Sally,
The drug is called Rituxan or rituxamab. It is a monoclonal antibody capable of targeting cells with a specific antigen allowing them to target cancerous cells. Good luck to your Mom.

Hi Sally,There are many on this board doing Rituxan.They also add it along with many chemo drugs such as mine Treanda/Rituxan.Have done many many years of Rituxan.I myself didn't have any major side effects.They can add drugs for sickness-nerves etc.Mostly just made me very tired the week of treatment.Best to your mom,Michele DX95 FNHL3