I Promised to Update: Lymphoma Diagnosed

[sainttsp]

I was in here in May and June searching for help and guidance and Ken and Mocha were such a huge help to me. It was confirmed, through surgical biopsy, that I have lymphoma. Didn't want that, but that's what I got. I now have to begin the next steps, have further tests and see an oncologist, but the diagnosis is "low grade B cell, grade 1-2 follicular lymphoma." I was told it is a NON Hodgkin type. That is what I know. I wish it had been something else, but it's not. Wow, I have a headache!! I am still trying to wrap my head around this.

[sainttsp]

Hi again. I just came from the oncologist, and after having the scan, the bone marrow biopsy and the blood tests, I am being staged at 1. The lymphoma seems to be localized to the groin. I am very happy with this news. I know how rare it is for follicular to be localized, and I know that it is commonly found in the marrow. I guess I really did find it early, just like they kept telling me.

The next step is to meet with the radiation oncologist. That will happen in the next few weeks. I will meet with the oncologist every six months from now on, regardless of how the radiation turns out, and hopefully I will enjoy a nice, long remission. Maybe by the time I need chemo, there will be a definite cure. One can hope, right?

[Mochadelicious]

You're very welcome.  Nobody asks to be apart of the cancer club but after you've been "drafted" you become part of the most amazing group of people and support.  You already sound like you have a positive attitude but I hope you are able to utilize the support groups and services in your area to help get you through this.  Your oncologist will likely talk to you about that.

A few words of advice if I may...be careful looking stuff up on the internet.  There's a lot of wrong and outdated information out there.  Try to stick to reliable sources like Leukemia and Lymphoma Society and the Lymphoma Research Foundation.  Also some of the top research hospitals like Seattle Cancer Care Alliance, Memorial Sloan Kettering Cancer Center, MD Anderson Cancer Center and Mayo Clinic should have good up to date  resources as well.

Please keep us posted on your treatments and how you're doing.

[sainttsp]

Hello, and I hope you enjoyed your weeks off. Thank you for your response. At the moment I am waiting for my first appointment which is on September 10th. I am glad to have found out that there is no big rush to treat with this type of cancer, and that I am not going to die if I don't see an oncologist for a couple of weeks. I actually am glad to have a little break between diagnosis and appointment, otherwise I think I would be sitting in the cancer clinic in a shocked, foggy daze. I am still having my moments of sadness and anger or both!, but I am trying to adapt to my new reality. I also know that I am incredibly blessed to have gotten a treatable and manageable disease. I didn't want any cancer of course, who does? I will now go into that first appointment with a little more understanding of lymphoma and treatment, and not just be the cancer shocked patient in a catatonic state.
I thank you for sharing your story and I have so much respect for you for being on this board, even years after remission, still helping all of us.

[Mochadelicious]

Sorry for the delay in response...I've been gone for a couple of weeks and just catching up.  Sainttsp...so sorry to hear of your diagnosis.  Ken is right though.  Prognosis for Follicular is usually very good as it is very slow growing and there are a lot different drugs they can throw at it these days if need be, but hopefully you'll only have to do watch and wait for now.  How did your CT scan read?

I was diagnosed with follicular 4 years ago.  I went through chemotherapy and Rituxan maintenance for 2 years.  Today I am still in remission (and hope to be for a very long time).  I've also heard of people staying in remission for 20+ years before needing additional treatments.

I'm sure you will have many questions as time goes on regarding your treatment and we are here to try and help when we can.  

[Ken_PA]

One thing I'd recommend for you to keep in mind is that your case is very atypical, and that's meant in a good way. Your nodes would grow to a certain size, then plateau.

*Maybe* that means that angiogenesis gets halted. There are even anti-lymphoma drugs that are meant to do just that, such as the infamous thalidomide and its derivative drugs like lenalidomide.

Maybe in your case, any anti-angiogenic effect is genetic; or maybe even it's due to your diet.

[sainttsp]

Thank you once again for your help. I had a CT scan yesterday and was told that there is no organ involvement. The next step for me is to wait for the cancer clinic to contact me, probably next week, and then go from there. We have a clinic in my city so I will not have to travel. In the meantime,I will go to that site you mentioned and do a little research.

[Ken_PA]

I'm sorry to hear that, but indolent (slow growing) follicular is probably the least-bad kind of lymphoma to have. In fact, some people are put on "watch and wait" and don't even begin treatment right away.

The usual "first line" drug, at least here, is called rituximab . It's an antibody which attaches to all B-cells, and leads the immune system to destroy them. It's very mild, with no hair loss, etc. It's also effective.

You might have a PET scan to see if there are any other sites where it has spread. Plus, a bone marrow biopsy might be done - but as I recall your blood cell counts are normal so that tends to say that the F-NHL is not in your marrow.

I assume that your LDH blood test is not very high, which is also a good sign.

If you look here:
http://www.cancer.org/cancer/non-hodgkinlymphoma/detailedguide/non-hodgkin-lymphoma-factors-prognosis
you'll probably see that you are in the most favorable group, according to prognostic factors. Scroll down to the table for FLIPI.

So, while it's certainly not good, it's not as bad as you might be thinking. Mocha has follicular.