Lymphoma Recurrence?

[LynneMargot]

Hi, I finished my chemo in June 2011 and my radiation treatment in Nov. 2011, and I have been monitored since that time. I think that the lymphoma has recurred due to beginning to have the same symptoms again (severe fatigue, swollen and painful lymph nodes in the same places).  I am scheduled for a CAT scan on Wednesday.  I had six R-CHOP treatments and then the radiation on the lymph nodes that had not resolved.  Any idea what my options are now?  I have Large B Cell Lymphoma and Follicular is suspected. Any ideas would be appreciated.

[LynneMargot]

Ken, thank you for the information. I've been monitored every three months, and for the past four or five months,  I've been telling my doctor that I am feeling sick again:  fatigue, intolerance to heat, night sweats (mild but they wake me up), and pain in the same lymph nodes that were painful before. When I had my CAT scan, it showed a problem possibly and the PET confirmed "active disease", but as to what kind, I've no idea. I see a new doctor tomorrow (my doctor retired).  I definitely have the Diffuse large B cell lymphoma, and the follicular was just suspected due to the clusters of lymph nodes effected.  When I had several flow cytometry tests, nothing showed up at all!  The biopsy indicated the b cell lymphoma and the bone marrow biopsy showed a problem. I think that I will ask for a second opinion on the original biopsy.
Breathing ok, but my immunity is low (I have a small cluster of warts on my finger which I do not think I have ever had in my life), but no other illnesses. No weight loss or fevers.
I see the new doctor tomorrow and I will see what she says. I'd like to be able to take the new medications, Bexxar or Zevalin, but I am allergic to iodine and that might be a problem :(
Thank you for your reply ; it has helped me focus on issues and I will be better prepared to talk to my doctor tomorrow.  lynne

[Ken_PA]

Hi, Lynne. As far as what type of lymphoma: how it looks under a microscope doesn't tell the whole story, I hope they did advanced testing such as Flow Cytometry and maybe also FISH. If it turns out that you have *Large* Follicular Lymphoma, then maybe that's good because it should be slow growing. Do you have the lab reports from your biopsy?

As far as feeling badly, I suppose you know better than anybody. But if you haven't been losing weight or having the B Symptoms, then I would guess that the recurrence isn't far advanced. Do you know the tumor sizes?

Is your breathing okay, no lung problems?

The Zevalin and Bexxar that Mocha mentioned use radiation attached to antibodies. The antibodies bind to B cells and the attached radiation is supposed to kill them off.

Another biopsy? It seems strange for them to say that they "suspect" Follicular. Still, some cases are genuinely hard to pin down. You can ask for a second opinion on the very same biopsy specimens that were looked at already, they don't have to get more tissue.

I've heard of Follicular transforming to other kinds of lymphoma, but not the other way around. Still, I guess anything is possible.

Good luck to you down there in Texas :)

[LynneMargot]

Thank you for the information.  I wonder if it would be wise for the oncologist to do another biopsy to determine whether it is follicular or B cell?  I'm going to research both Bexxar and Zevalin now.
I wondered if the disease was returning. I never recovered my energy level, but I thought that might be the results of the disease and the treatment...and for a while I was improving. Then it seemed as if I was having more episodes of fatigue and other symptoms. I thought that something was wrong. It took a while for it to show up on the CAT scan and in the lab work.  
Thank you so much for taking the time to reply to my email. I will see the doctor on the 28th to discuss treatment.

[LynneMargot]

I just read today information that came out of the Annual Oncology Seminar :  That patient's symptoms, a physical exam and lab work is more accurate than a CAT scan in identifying recurrence early. That was true in my case. I just knew that the disease was active, and now the CAT and the Pet that I had May 1 has shown that the disease is back, more active in a different place.
Thank you for the information, Ken. I'm going to do my own research and see what I can find out on my own without totally relying on my doctor to determine treatment.  I appreciate your reply to my concerns. Thank you!

[Mochadelicious]

Assuming you are cured of the large B cell and only have Follicular, they will probably want to see where it's at in your body and consider your clinical symptoms before treating.  If the Follicular lymphoma is "quiet", meaning it's behaving itself and not causing any clinical symptoms such as fevers, night sweats or weight loss, they may want to do watch and wait.  You might want to read up on Zevalin and Bexxar too and then talk to your oncologist about it.

Good luck and let us know how it goes.

[Ken_PA]

Hi, as far as I remember, they try chemo again and if the person responds well, then they consider going to a marrow transplant - if the person is strong enough to undergo a transplant.

You probably can't have any more doxorubicin/Adriamicin, having reached the lifetime limit, for fear of cardiotoxicity.

I would certainly look into taking whatever you can to reduce toxicity in general, like melatonin -- with the doc's permission, of course.

It wouldn't be a bad idea to get a little acquainted with whatever new drug approaches for DLBCL are on the way.