@kittiekiernan Have you been examined and tested for this? If your primary dr will not refer you to a specialist, can you appeal to your insurance for help?
Ginger

Nope no one does nothing for me

Chronic Epstein barre causes it , I have it and I am brca 2 positive had full mastectomy and hysterectomy

Can you tell me what dosage of curcumin you used? I hope your cancer stays away!

Hi everyone, I have seen now 3 dentists since my last post. I got to tell you all I really despise dentists. The prosthodonist said the crown was not made correctly. I saw her 3 times.. she shaved to tooth down 3 times. The endodontist monitored the tooth and prescribed a rinse sooth the gum line and tooth. He thought the tooth was ok but the crown didn't fit right. The prosthodonist called the original dentist to tell him the tooth was not properly fitted and that he needed to redo the crown. Then that would result in a root canal. So the original dentist I went back to today. He decided to put a seal around the tooth and shave it down even more. Let see now if this works before he yanks it off and remakes the crown? This is complete torture.

@susanlim I agree but I think it gives them an idea if the disease is stable or becoming aggressive ?

@kittykiernan so sorry to hear. Who diagnosed you with Epstein barre virus? Can you go back to that Dr? Will he help you?

@vonbaron36 I been on a Watch and Wait since January of 2016. I dont feel or see any swollen lymph nodes. Mine lymph nodes they r waiting r near my Aorta. That is a good sign you could be on watch and wait your whole life. 🙂

@gingerw Hi Ginger, nice to meet you. I been swamped with work and my move. Don't believe you and I have chatted yet.
What made the new doctor diagnose you with lymphoma? I am not familiar with MGUS. Is that a Lymphoma? Now did the Doc say what exact kind of non-hogkins lymphoma you have? There are about 65 different types associated with this disease. You also mention kidney disease. Is that a complication from the MGUS? How is your blood work?

My primary

@travelgirl Hi Jackie. Two years ago I was told I had MGUS, and believed that, with quarterly bloodwork. In December 2018, my hematologist-oncologist said "let's go 6 months this time, since everything seems to be looking good". In June my bloodwork came back wonky; it was also right at the time of moving out of state. A PET CT scan and appt with new h-o here, and he told me "oh, I see you were diagnosed with low-grade Non-Hodgkins Lymphoma 2 years ago". I went back and read the very fine print of that first bone marrow biopsy and saw what he did, but my old dr never told me, nor followed up with suggested additional testing. In less than 2 weeks I get another biopsy. He also ran testing to tell me what kind of lymphoma it is, but haven't gotten the results yet. My kidney disease was diagnosed in 2015, and is ideopathic, very rare; my GFR is about 32%.
Ginger

Hi Jackie I was diagnosed January 2017 stage 1/2 Follicular lymphoma. I'm also breast cancer survivor 2.5 years out. I go to my oncology doctor every three months for blood work. My insurance will not authorize any scans so my last scan was July 2017. I'm feeling well. The doctors found my lymphoma when I was having a scan for kidney stones.

Hello @patmariejohnson. How have the results of your regular blood work looked? You may also be interested in checking out some of the discussions in the breast cancer group as well, https://connect.mayoclinic.org/group/breast-cancer/. You also mentioned that you are feeling well, are the regular blood draws to monitor your lymphoma during your "wait and watch" period?

Hello justin My blood work looks fine except the rbc and MCHC is a little low and MVC ia a little high. The blood work is to monitor my lymphoma. Also I'm taking prolia shot so they need to monitor my calcium and phosphorus levels . Thank you for the breast cancer link.

Susan again. To let you know my follicular lymphoma transformed sometime in the beginning of 2020 to high grade DLCBCL lymphoma with a single C-Myc translocation. I had no symptoms. This was only found via enlarging nodes am slightly elevated LdH. The scans and biopsy then showed spread and aggressive diffuse large B cell. I completed 6 rounds of R-CHOP and 2 of maintenance rituximab but my end PET-CT showed just one remaining metabolically active axillary node.

That node is now being studied via core needle biopsy. I had been pleased that almost all of the cancer had been eliminated by the chemo but apparently it is a pass/fail system, and even a small amount of residual cancer indicates refractory/ relapsed disease and treatment failure. Further, I feel well physically. My blood values, which were never far out of range, are normal and I continue to not have B symptoms. This is a most devastating result as the chemo had seemed to be working well. elEmotionally, it is almost unbearable, as a few only toxic and uncertain treatments seem possible. Stem cell transplant has a very low success rate in Transformed Lymphoma. Car T Cell is possibly available as 2nd lone treatment in a trials setting. I hear back from the doctors on Thursday. I wonder if anyone else has had this experience?
I put “Transformed Lymphoma” in the search engine and found no results. Question for the moderators if there is another heading on the boards for this?
Terrified and devastated. Susan

Dear Susan – my son had much the same experience as you have had. He had a stem cell transplant as well – but the B cell was back within a year. He then went to the wonderful
Mayo Clinic and had a T-Cell transplant. That was in August 2018, and just had his 2 year checkup! All seems good. We are so greatful to the Mayo!
Thinking of you and let us know what your next step will be.