Primary Bone Lymphoma, anyone?

PBL,

Your case is about as unusual as I have read, but our unofficial Rare Cancers person here, Po18Guy, might be able to mention some specialists or Rare Cancers Centers to you.  He is expert with T-cell diseases and Stem Cell transplantation issues, among others, but might have heard of someone who can direct you.  Send him an email to grab his attention; I'm pretty sure he won't mind me mentioning him.

I do recall a few Bone-Primary patients here, but do not recall whether their's was indolent or the conventional aggressive strains. I hope the write you also.

max

I am a T-Cell guy, but may know a little about other forms. Sorry to hear of your concern, but very happy to hear of your remission. Lymphoma may both occur and relapse anywhere in your body, so standard vigilance and monitoring would be appropriate. It sounds as though it was in your marrow and may have migrated to, or invaded the bone? Did they consider radiation at all? As to maintenance Rituxan (a 'monoclonal antibody' drug), you have an option now if the lymphoma finds its way around the Rituxan. There is a more potent monoclonal antibody available: Ofatumumab (Arzerra). It is labelled for chronic lmymphocytic leukemia (CLL), but is now in trials for lymphomas.

It eliiminates more B-Cells than Rituxan, for a longer period of time, and eliminates those B-Cells which have a much lower surface expression of the protein CD20, which is the target of Rituxan. I have just recently received it in a clinical trial against Graft-Versus-Host-Disease, associated with allogeneic stem cell transplants. 

If your follicular was limted to the bone (and it may have been), there is the potential that you will be in a very long-term remission - perhaps even for life. In the case of an inolent lymphoma, this is a true blessing. Praying that it does not relapse, but you have options if it ever does. As to the rarity of its presentation, the type of lymphoma is much more important than where it presented itself.

That is our human nature. However, what you had is not bone cancer, but lymphoma in the bone. The chance of it choosing bone elsewhere in your body seems to me to be extremely unlikely. A single mutated B-Cell migrated to your bone as part of its routine travels, cloned itself for some reason and grew in your bone into hundreds of millions of clones of itself. For one of those clones to have survived, and to have then taken up residence in another bone elsewhere is about as likely as your chances of winning the lotto, I would think.

Each and every pain you feel is referred to as "noise" inasmuch as it raises the specter of a relapse. But, our fears rarely materialize. What you will have to be aware of is that it could relapse, and anywhere in your body, from brain to eyeballs to pancreas to spleen. Lymphoma, being a tumor of the immune system, can occur anywhere in your body. Vigilance is the correct response. 

Will it relapse? No one can say. The advantage is that new treatments are arriving regularly, so hope is increasing as each day, week, month and year pass.  

Hi PBL, Just got back on the boards recently.  Although the term PBL was never used to describe my NHL, as I told you in previous threads I too had the lymphoma only in the bone marrow of my right hip and pelvic bones.  I finished bendamustine and rituxan in late October and my November PET scan showed "NED" no evidence of disease.  I don't go back to the oncologist until March. 

I asked about how I would know if it came back too and they were just as vague as your doctors were. I think they honestly can not tell you because as we all know now each case is different and as po18guy said the cancer could never come back or come back somewhere else in your body.  It's enough to drive you mad, believe me I know.  I continue to have aches and pains and stiffness throughout my body, but my doc did say it would take up to 12-18 mos post-treatment for my body to feel 'normal' again. I am attributing most of my pains to that in an effort to stay positive. 

Oddly enough ,I too have had a great deal of right shoulder pain recently.  At one my apmts my doc had said there "might be something in your shoulder too".  It was never confirmed to be the lymphoma because to do that they would have to biopsy the bone marrow there (that is how they diagnosed the hip).  I had a muscular injury in that shoulder prior to my diagnosis and I truly feel that is what caused that pain and not lymphoma. However, flash forward several months and my shoulder is bothering me again. I am going to the orthopedic to check it out, but am also worried so I messaged my oncologist about it. Waiting to hear what she says. 

So....too late for a long story to be short, but my decision is to just take one day at a time. For me the cancer showed it self to me via intense, severe pain in my hip and so if I ever feel that kind of pain anywhere I will certainly be calling the doctor. For the rest of my somewhat normal pains I just manage through diet and exercise. 

It's hard.